Hannah is the reason for Health, Home, & Happiness. If I had two typically developing children, I wouldn’t have done the whole GAPS journey, wouldn’t have so much to share with you on the internet, and most likely would be in a different line of work. She has special needs, she had autism but it was healed with GAPS, but she still has a global delay diagnosis and we’re still trying alternative treatments to heal her body as much as possible.
Further reading: What is the GAPS Diet?
I love that I have the internet available to share what I have learned with all of you. Today I’m going to talk about some things that outsiders might not realize about families that have a special needs child in them. Of course, this is all true for me, but won’t be true for all families.
It’s hard to know what you don’t know
Before I had a child with special needs, there was so much about special needs families that I didn’t understand. And I know there is still tons I don’t understand- I have avoided the whole medically fragile/multiple hospital visits route, and I know I have readers there. I have some readers with multiple children with special needs, some with higher functioning children, some with lower. We all love our kids though, and we all have different strengths and challenges.
Today I present 10 things that many special needs families often don’t talk about, but do often feel. It’s a given that we love our children, and you’ll hear us talk about that and the rewarding parts of raising them, but this is some of the hard stuff:
We don’t have anything extra
1. Parents of special needs children don’t come with any extra energy or more patience or understanding than anyone else. It feels dismissive to us when people say to us, ‘God will only give you what you can handle, He must have known you could handle it.’ Yes, we’re handling it, and we understand that you can’t imagine yourself in our shoes, but it doesn’t mean that it’s any easier for us than it would be for you.
Emotional Exhaustion
2. Sometimes the emotional enormity of it is more exhausting than the physical aspect of having a special needs child.
For children that need to be carried and lifted more, our muscles build up strength. I have some killer arms, since I still carry my low tone 47 lb 6-year-old fairly often when she gets tired.
But emotionally every developmental change, school placement, choosing alternative treatments, supervising and making medical decisions are just as exhausting this year as they were last year.
Before I had a SNC (special needs child) I assumed that if you had a SNC you just went and signed up for services, and someone told you exactly what to do, what you qualified for, and always acted in your child’s best interest. In some places that is true, but in most cases the parents have to really network with other parents to see what’s available, apply and re-apply for a correct diagnosis because the standard testing may or may not accurately reflect the child’s actual needs, and fight through red tape to get the child to be placed in the appropriate setting. And then do it all over again in 6-12 months when their developmental needs or school placement changes.
For expenses- there is so much out there, but it costs so much more than stuff aimed at typically developing children! Horse therapy- $60/session, a visit to the naturopath $200, speech therapy $48 twice a week…
Further reading: Simple Budgeting to Reduce Stress
Paperwork and Phone Calls
Tons and tons of it, from everyone that even looks at our child, and many people who don’t even see our SNC, 10 pages of paperwork is often requested, they look at it for 5 minutes, and then realize we’re not the right fit.
I keep an Excel document with the names, addresses, faxes, and phone numbers for everyone who currently and in the past has worked with my daughter and print it out before we see anyone. I call it her resume.
Phone calls are hard, just like your children, our kids also act up while we’re on the phone. But as parents of SNC we’ve learned that it’s better to spend half an hour on the phone and make sure the specialist is actually something we need to go to before we drag the kids out for half the day for an appointment.
Family Priorities
5. Our priorities change based on the entire family unit.
Sometimes we are focusing on limiting screen time, sometimes we’re focused on a special diet, sometimes we’re focused on a behavior issue, sometimes it’s academic, sometimes it’s just maintaining the progress we’ve made so far because the family is going through some other transition like moving or having a new baby.
It’s impossible for both the child and the parent to focus 100% on everything at once, so it may look like we’re changing our mind and jumping around a lot. Or we might be changing our mind and jumping around a lot. I promise, though, we’re not doing this for fun or because we’re bored- we’re trying to find what works best for our family.
Further reading: 101 Family Friendly Summer Activities
We need Self Care Too
6. We soon realize that we can’t give our special needs kids 100% of us 100% of the time.
Because parenting a SNC is so intense, we eventually realize that we have to take ‘me time’ to avoid burnout. I had the idea that as a parent I could keep pushing myself and eventually I’d get used to it.
It took me 5 years, but eventually I learned that I have to take some time out and take a break from completely giving everything for my child. I come back refreshed, and much better able to a good job as a parent. It’s a good mental break too, to be somewhere where you’re not just known as a mom of a child with special needs.
Continue reading: Self Care for Moms
Childcare
7. It’s super hard to find qualified childcare for our special needs kids!
And we often need more of it than parents of typically developing children, since our kids require more of our attention when we are watching them and might not do well on standard errands.
I’ve been fortunate to find amazing nannies to help me out part time, but because my child takes so much attention, I have to pay quite a bit more since the babysitter can’t take other children alongside mine, and she needs a higher wage than the high school girl down the street that could watch my typically-developing children just fine.
The person providing childcare has to be experienced with special needs, on top of things, and has to have a personality that meshes with our child’s.
Parenting Advice
8. Our children’s behavior issues are not from poor parenting.
Yes, consistency usually helps, but the way these children’s brains are wired and the sensory issues they deal with make them not respond to regular parenting techniques the way a typically developing child would.
I’ve personally found that other parents have more grace with me when I put a medic alert bracelet on my daughter, it kind of gives them the heads up that she’s a SNC and I tend to avoid most of the glares at the playground for age-inappropriate meltdowns.
We still have to go buy groceries, go to the bank, and get our car fixed just like everyone else – and sometimes plans can’t work around our children’s sensory issues, so they may be fussing in the store. It’s just how it is, there isn’t always an option to ‘do it when someone else is watching her’.
Further reading: Are Sensory Issues Causing Your Child’s Meltdowns?
Not Easily Offended
9. It doesn’t offend us if you ask us about special needs at all.
Unless we’re newly diagnosed or still trying to figure it out ourselves, in that case it might be overwhelming. But to a family who has been ‘doing the special needs thing’ for a while, we’re happy to talk to you and help in any way we can.
Many moms come up to me and want to ask if their toddler is showing signs of autism, or other special needs, and I’m always happy to talk about it with them (they’re usually not, and of course I’m not a medical professional but I’ve been around enough SNC that I’m fairly accurate on what’s developmentally appropriate and what’s not).
10. We want the best for our child, no matter the circumstances.
That’s why we work so hard to help our children. We don’t work hard because we are ashamed. We don’t work hard because we’re in denial.
We work hard for our children because we want to make sure we’re doing everything possible so that our child has the highest quality of life, and meets their fullest potential.
Recommended Reading:
- 10 tips to help you interact with our (special needs) family.
- You Know My Child Has Special Needs… Preteen Edition
- Special Needs Mamas, You Need Self Care
- It’s a Sensory Issue (that’s why they’re melting down!)
- Minimalism and Parenting Children With Special Needs
- 5 Things I Learned About Special Needs That Also Apply To My Typically-Developing Children
Learn how to heal leaky gut
60-page ebook of all my best GAPS Diet (Gut and Psychology Syndrome) articles all in one place.
I did not know you had a special needs child….
Just wanted to say… “Kudos to you!” …. Kudos for having the strength to share your story, and kudos for being the kind of human that was granted the privilege and honor to be Hannah’s parent(s).
I only hope that your story will give other parents with this honor the strength to recognize and appreciate it, and to help those who will never have that honor to see what a privilege it is, and maybe they will recognize the tremendous responsibility you were handed.
Honor?
I have a special needs son who is now 46, The Regional Center in your area should help you with all the services you need.. My son has CP and is developmental delayed. It has not been an easy road but you do what you have to do and you do it the best you can, and you have to be there advocate forever. And its all because you love them so much and just want them to be happy
You’re right, you do have to be their advocate forever. We’ve lived in 3 different states, and in my experience, the regional centers vary wildly. Some are very helpful. Some pass back and forth between the public schools, each claiming that the other should be providing needed services.
I have two children; my almost-6 year old is developmentally on track/ahead of the game but developed SEVERE debilitating SPD around the time he was three years old…GAPS cured it, but we’ve gone down that road and lived in the autism spectrum world for a while.
On the other hand, my younger daughter who is 3 is “special needs” as she has tuberous sclerosis complex, and as a result has benign tumors in her brain, heart, kidneys, eyes, skin, nails and gums–and intractible epilepsy and delays (even with GAPS, chiro, herbs, supplements, CST, etc) as a result of that.
All i can say is YES YES YES to all of the above. A thousand times yes.
Great article! I shared it on Facebook.
Thank you for writing this! I can yes to all of these.
What a service you’ve given to families with special needs kids Cara! Two of the things that struck me were the difficulty navigating for services and the amount of paperwork required to get through the maze. No wonder so many special needs kids fall through the cracks . . . you children are blessed to have you for a mom . . .
Ty so much. Im a blessed grandmother to two special needs children. My daughter is a single mom of these 2 boys, 11 and 12 yrs old. I forwarded this to her. God bless u and r family.
You know what Mother Theresa’s come back was when people said, t”he Lord won’t give you more than you can handle?” She said, “I just wish He didn’t trust me so much.”
I am a mother of 5, my oldest who is 15 was diagnosed with Asperger’s Syndrome at age 13. I also worked several years with the developmentally disabled. Although I think this article is informative, I am wondering if a doctor has told you that your daughter is no longer autistic? I have a hard time when people say someone has been cured or no longer has autism. I mean no disrespect but I feel it gives other parents false hope that they can “cure” their child of autism. Although I think therapies, social groups, and even dietary changes can help with Autism’s symptoms I don’t think any are a cure. My son with always be on the spectrum, through social groups, help from his IEP and just from getting older he is learning to cope with the fact that his brain works differently.
A psychologist told us, she gets diagnostic testing yearly to determine eligibility for placements. I’ve seen stories of people with complete recovery (we lost the autism symptoms, which is why we don’t qualify for the ASD diagnosis any more, but she still has delays) and I still find those stories encouraging, even though it didn’t happen for us :) It doesn’t really bother me if people think she still has autism, I’m not set on a specific diagnosis. But according to the dsm iv she doesn’t have it.
Thank you so much for responding back and I hope that I have not offended you in anyway. I know every parent that has a child with Autism or other delays or issues has their own unique path. I also know that autism can be such a difficult thing to be diagnosed, because it took years to get my son’s diagnose. I am happy that the Gaps diet has helped your daughter and helps other families as well. My only concern is newly diagnosed families are sometimes overwhelmed with information and they go down many paths that lead to things that may not work for them. I think it should be known that a diet like Gaps may or may not work for their child and I don’t know if this article expressed that. That being said I think the article has a lot of wonderful information especially about the struggle and cost of services for children with autism, learning disabilities and physical disabilities.
No worries :) I’m not offended, it’s a common concern. I bet 2/3 of the things I’ve tried for my daughter haven’t worked, it’s just kind of how it goes with conventional or alternative treatments :)
Hello,
I just noticed the date on these comments and now it’s been 7 years. I’m wondering how things are going now?
I have an autistic son who is now 14 years old. We have been through a lot with him and tried many therapies alternative medicine and some diet mostly gluten dairy free. But the diet was when he was younger.
Thank you for your post! It is so comforting to hear that it is okay that I am struggling to be a good mom, and that I make mistakes in raising my SNC. Thank you for the reminder that I need to take a brake now and then, in order to meet the challenging tasks, and if I don’t do every program/strategy out there that things will be okay.
seriously look at healingnaturallybybee.com its really good!! contact her directly on her free forum for help :)
Thank you for sharing that.
I have a good friend “Momming” a special needs family and I hope that this helps me to be a better friend.
I have two special needs children.. one gets funding for services.. the other 9 anxiety and self harming.. doesn’t… go figure.. anyhow. for 17 years I have joined every single organisation that says join up, we will give you a break, give you a holiday away, or a carer for the night out etc etc etc… and still I wait.. and yes the paperwork and phone calls are endless and long and draining and never end.. I’m balanceing School, TAFE, appointments, applying for the Dis. Pension for my son, and then my daughters issues, my own health issues, and then these places, don’t know if they know they do it… they make you beg… plead… I have a saying.. I have a calous on my nose from all the doors that have been slammed in my face, and scrapes so deep on my knees form getting down on them to beg for help….. at the end of them asking levels now… 17 years… nothing.. oh well onward and upward :)
Oh my god I’m going through all this I’m in tears reading this .my son as special needs. I feel the system let’s kids down never mind the one s with special needs they think that r likedust blow them there gone x
I really appreciate you writing about your family. It helps when you here how other people deal with similar situations. We adopted 4 boy’s and they all had different health, learning and mental health issues. It took me a long time to remember to take time for me. It always made me feel guilty. I’m glad I came across your story. 😁
Erin,
Thank you so much for sharing. This is great. I have a special needs child; however, we tried very hard to “hide” it from her. She grew up unaware that she was “different”. This worked primarily because it wasn’t as severe as others. Through a lot of hard work and encouragement, the child doctors said would never graduate from high school graduated with an advanced degree and is now in college. Granted she is a 21 year old sophomore but that doesn’t matter. One step at a time is what I learned.
This is so true! Thanks for putting this into words!
The verse about God not giving you more than you can handle is about temptation to sin, not about difficult life circumstances. You have to read the verses around it, not just take out one verse and use it in the wrong manner. I think people use the verse this way, because it gives them a good reason not to have to help others, which God does tell us to do. Great post!
Ummmmm…really? Did God tell you this personally?
Sarah, such a good point. The verse is in the context of describing encouragement for finding a way to not give into temptation to sin. Simply saying to someone “God won’t give you more than you can handle” is a platitude and probably due to someone wanting to be encouraging but not really knowing what to say. Of course, it could be that the person is avoiding getting personally involved to offer to help, but more likely I would think people who say that are uncomfortable and wouldn’t mind helping but don’t really know what to say or how to help.
As the Nana of a SNC on the GAPS diet, we have changed our household so that it is safe for her. We have changed to GAPS and I have spent time detoxifying our household. It’s important for these kids (and their parents) to know they have safe environments where they go.
Thank you for saying that about the verse Sarah ~ So true and Very Important to Remember, never lift a verse.
Cara ~ I know your journey well, my two SNC are now 20 & 18. I found the ‘Systems’ way of helping SNC was a big part of the problem. My children’s autistic stresses would compile and they then couldn’t deal with simple things that would not otherwise bother them. So I home-schooled my daughter when she was kicked out of kindergarten tor her melt downs, and my son when they changed his special ed program causing him to melt down at home in completely new ways. For us, keeping a clam routine was key for them to then handle simple life activities like shopping and running errands. For us melt downs were a result of accumulated stresses. Keeping a steady, clam environment and spacing these stressors out enabled my children to better handle and recover from life’s stressful moments. But as you say every family and situation is different, this is just my story.
It is very hard, and I never found the help for working with the kids I needed. So I looked for an activity to burn off energy without adding to their stress loads. After much prayer the Lord brought it to our door, our neighbor offered the kids her small paper route (44 houses). For two years I drove and managed them through a paper route, teaching and prompting. Just when I was ready to stop my daughter stepped up and began to manage her brother through the paper route without me. This repetitive ‘job’ was good for them, and we added another route after 3 years. This exercise, walking outdoors, added another level of health to their lives without adding more stress. My daughter went on to add 4-H and other small group activities to her life with my support.
We have found our way by not relying on ‘expert’ advise from the SN programs and doctors. Although I did try most of it (with the exception of medication), and all of it did take a huge toll on me, paper work and all. As a single mom, I had to measure all by my children’s peace levels, and mine :-) If they didn’t have peace it wasn’t working.
Diet and Exercise, plus Predictability and Routine were the way we survived, and thrive to this day. To me (my way of thinking) a melt down is a symptom of load one cannot manage, and changes need to be made, The ‘experts’ believed repetition would cause SNC to learn to cope, but this was not our experience. I know personally what anxiety feels like, and under stress learning doesn’t come easily if at all. So I am the champion of my children’s peace. If that means we do things very differently so be it.
After I pulled my son out of school everyone of his long time special needs teachers told me, in hushed voices, how glad they were I got him out. And how much better he looked and acted when they saw him now. He started speaking in full sentences. When your not overwhelmed you do learn, look and act better :-) I would like to say, that in our experience, autism is not just a moment by moment condition, but an accumulative one, and those who suffer will melt down in the moment as well as much later on, after the stressor has passed. This makes managing SNC’s triggers much more trickier.
I pray for strength and support to all of us who take care of the fragile ones among us.
“I am the champion of my child’s peace.”
Man, I love that. Special needs or not, that is what I want to strive to be for my children.
Well, said!
I loved it too! Is the best thing I want to be for my children too! God bless you all.
This was a really wonderful post and very informative. Thank you for sharing!
Oh my gosh… You so hit the nail on the head! I agree with everything 100%!!! I wish every adult (and teen) in America could read this post. It might make it a bit easier for those of us that live with this on a daily bases. I have two kids with special needs. In some ways I am lucky that they are 6 years apart in age, so I am not dealing with quite the sames issues with both of them at the same time. Both, are pretty high functioning (as in they are really smart and have a high chance of being able to live a fairly normal life and be able to take care of themselves one day), but that does not mean we don’t have hourly challenges in our house (notices I didn’t say daily! lol!!! As I’m sure you understand). I so understand the stares from the meltdowns in the grocery store. Ugh! What has finally helped in our case is, my youngest who is ten wants to be in the large basket of the shopping cart and play his video game and I let him. Yes, it’s a bit weird to be pushing a 10 year old in a shopping cart, but it has stopped the meltdowns, so I do it. *sigh* Now of course, I still have to get groceries and having a big 10 year old in the cart makes it kinda hard. So my other son (who is almost 17 and also special needs) pushes another cart to put the groceries in. Now why doesn’t the 17 boy push his 10 year old brother in the cart? Well, because he’s special needs and impulsive and does dumb things sometimes… and because my 10 year old would start freaking and melting down if he did… So I am building up muscles pushing this 80+ pound child around in a shopping cart to just to save my sanity. lol!!! I mention all of this so hopefully it will reinforce what you have said about parents having to jump through hoops when raising a special needs child. You develop a new normal. You can totally forget about everything you previously thought was normal.
Lynn
What a relatable comment, Lynn! And you also reminded me of how good us SN parents are at seeing the glass as half full! I’m constantly reminded that my life could be so much harder, just because I have more exposure to the SN community.
Thanks Cara, I can totally relate to all of this. My almost 2-year-old daughter has a rare chromosomal abnormality, and thankfully she is pretty highly functioning and people still view her behavior as being normal considering her young age. Sometimes I worry about what it will be like as she gets older but mostly I try to take things a day at a time. We’ve been taking her for Anat Baniel Method physical therapy lessons and they’ve had a remarkable impact on her development. I would highly recommend anyone with a SNC look into it. I was blessed to find an ABM practitioner in our area who also trains new practitioners. It is pretty expensive so we can only take her for 2-4 lessons per month but even that has helped her tremendously. How does a parent know if their child needs to go on a special diet like GAPS? I’ve considered GAPS for my daughter but my chiropractor/naturopathic doctor who does muscle testing hasn’t identified any food sensitivities or allergies in her except when she was an infant and had a sensitivity to my breastmilk due to my diet, so I cut out gluten and dairy and by the time she was six months old, she was fine with my introducing those foods back into my diet.
There are so many good things, I’ll have to look into ABM! For GAPS, you may want to read this post and see if it relates: https://healthhomeandhappiness.com/2010/11/the-gut-brain-connection-autism-add-allergies-and-other-diseases.html
great post, my son’s situation is not autism/sensory issues(though he does have some texture issues), but rather medical special needs(Mitochondrial Disease) but each of these things I related to in one way or another. My husband and I still haven’t gone away for an overnight together in over 4 yrs since I can’t leave my son with “just anyone”. Thanks for posting. It made me feel like I am not the only one that thinks this way :)
I get it! I just started leaving my daughter overnight occasionally (she’s 6) and I leave her a couple house before bedtime and pick her up at 7 or 8! I still haven’t left her during waking hours for more than maybe 6-7.
Can you do a post on proper etiquette when interacting with an autistic child? I am not completely unfamiliar with special needs my cousin has cerebral palsy but she is high functioning. Growing up we treated her as normal but with extra kindness. A friend in my homeschooling group has a child with autism and i just don’t know how to react. I feel weird treating her daughter like a typical child but I don’t want to be patronizing either. Because I don’t really know how to treat her I’m not sure what to tell my kids, other than be extra kind. Should they try to engage her or just ignore her?
I think a post about this topic would be helpful for many people.
Good idea, I will. In general just having an accepting attitude and a face that says ‘I like you just how you are’ is what these families and children want. There are always some families that will be offended no matter what, don’t take it personally, they’re fighting their own battle and it has nothing to do with you.
Thank you so much Cara. These all ring so true for our family….. we have 3 special needs kids – who have all come a very long way since beginning gaps 3 years ago – but they are still SNC and I am totally depleted from caring for their physical and emotional needs daily for the last 17 years. I would like to add one more item for your list. That would be …. many of us are very lonely as caring for SNC can be a very isolating experience. Other Mom’s and Dad’s seem to find common ground on the soccer sidelines. In our case, since the kids aren’t very social despite our constant teaching and modeling, they don’t draw people to them and often they aren’t part of the community outside of school so there is little opportunity for interaction with other parents in an informal setting. Since they need so much – be it dietary guidance, emotional support, various therapies or whatever, it is incredibly difficult to carve out time and expend the effort it takes to try to develop relationships on your own though probably it would bring much reward to my life.
I couldn’t have said it better myseslf…in fact I’ve been trying to figure out exactly how to say this kind of information to those in my world who may be struggling to understand.
Thank you!
Hi Cara
Glad to read your post. I don’t have an SNC and haven’t been down that road so thank you for sharing that. I think it’s all the more amazing that you’re able to blog and write books and meal plans etc while juggling everything else.
Thanks Abby :) I’m a single mom, so I am thankful I can do this and still be flexible to work around appointments and stuff!
Great post. Penelope just got diagnosed with SPD and I am still wrapping my mind around the fact that she is special needs and that I am a parent of a special needs child.
Hugs Stephanie. It’s really shocking at first, most parents go through a grief process – grieving the child they thought they would have. It’s not always as hard as when you’re ‘newly diagnosed’ as we call it.
Hi Cara, I am the grandmother of a disabled child who is now 3 yrs of age. Although she presents as having symptoms of cerebral palsy she has as of yet been undiagnosed and we r still searching for a diagnosis. I am writing to you with the hopes that perhaps you could give me some direction as to how to help my son who is struggling terribly with how to deal with his daughters issues. You mentioned going through a grief process and I believe that this is exactly what is happening with my son, for the past almost 2 and a half years. He is grieving the life he expected for her to have and doesn’t know how to handle it. He is such a good daddy and loves her unconditionally. I guess my question is where can he turn for help? I never read much about the daddies out there. His relationship with her mom is falling apart because he has difficulty talking about what is happening with his daughter to anyone and no one knows how to approach him about it. Any and all suggestions would be helpful and if there are any daddies out there with similar feelings, I would love to hear from them as well.
I would suggest counseling to work through the grief process and for the couple, it’s common for parents of special needs children to have difficulty, it just adds an unexpected turn to the relationship, and the parents might work through it differently.
What I would like to say is, if you have the ability to do so, offer us help. I have a daughter with both Down Syndrome and Autism. I have another who is mostly neurotypical but has some issues too. It is frustrating to have people all around who don’t ask how we are doing and who don’t offer to help. Also, we don’t want people to offer advice about how to raise our kids unless we ask for it. Most people don’t realize that what works for their kids does NOT work for ours. We don’t suck as parents, we are doing the best we can with our situations. I think the point about expenses is a critical issue as well. The prices you quoted are probably the bare minimum. Most docs that know their stuff charge upwards of $350-$500 for the first consult, then maybe half that or so afterwards. So parents who go to a specialist, get some help then never return are probably never returning because they just can’t afford it. We can’t go out to dinner with you, we can’t attend those birthday parties, we can’t go to the baby shower. It takes help, and most of us don’t have it. And we’re not being picky if we don’t eat your food, our kids can’t tolerate it. We’re not judging you, we just can’t do it. And yes, it could do some harm “just this once.”
Oh, I could go on and on,lol! This is why I prefer “hanging out” online with special needs families. They get it and actually have some sympathy for the situation. It doesn’t even matter what special need it is. They get it.
Thank you for this! I have three girls with Down Syndrome, ages 18, 20, and 26. I also have six “typical” kids, four of whom are still at home. I have read a lot of posts about parenting special needs kids. I have hated most of them. They either paint this rosy, sickly sweet picture (ick!), or the parents are all wrapped up in pain, denial, or grief–which I, as an adoptive parent, really never understood (not saying it might not be warranted–just can’t relate). I can TOTALLY relate to what you wrote here. These are the problems I deal with on a daily basis. I really don’t see any way out of some of these very real situations. But it is sure nice to be understood!
Thank you for giving me a little insite. I’ve never dealt with these types of issues and so I am ignorant but you have helped open my eyes.
It is so nice to read all your stories which are so true and helpful. I’m a mother of a 30 year old daughter with Down Syndrome and I’m 65. Your right when some of you say it’s a never ending story. She had 3 older brothers. She had been by my side for 30 years and will always be as long as I live. I’ve just gotten on some of the blogs in the last 4 or 5 year because we found out that we’re Gluten intolerance and at 60 I was not looking forward to try and learn something else at my age but when you have to do something for your child weather it be SNC or not you try to find some way to work with it. I’ve had to learn how to cook all over again and though my better half has been by my side for over 40 years he doesn’t believe that the type of food you eat makes a difference. And I believe it does. She always had some slight stomach issue every since she was very little but as she got older in her 20’s it became a constant pain in for stomach.
And trying to get the doctors to understand that it’s not to get attention and taking her to doctor after doctor and they also start to think that it’s only in my head and there’s nothing wrong with her, which we went through for almost 9 years before we found out that she was GI and than I took the blood test and found out I was GI also with no systems. So trying to figure out what she can and can not eat is a problem for both of us because she has all the systems but it hard to tell when or where she hurts and I don’t have any systems but after many test I’ve showed up with several things wrong with me that are caused by gluten.
Anyway I do and have giving her my whole life and hardly take anytime for myself and just have accepted that way of live. So for many of you I have been there and done that and my biggest worry now is when it’s my time to go WHO will care and cook for my daughter the way that she is use to. Our SNC are on our mines for life. I feel and bless all of you who have SNC because it does take a lot out of us. I’m just glad that it is getting better for us than it was 30 years ago but since there is so many SNC today it’s a long waiting list for all of us. I do pray a lot and thank God what what I have because I know it’s always worse on the other side of the fence if you just look. I’ve also can’t go out with the few friends that I have because there kids are out of there homes now since I had my daughter so last in life and she goes everywhere I go. Thanks for letting me tell a little of my story. Take Care and God Bless to you ALL.
Thank you for posting this. As the mother of two children with special needs, I can relate to your article in lots of ways. I’m sharing it on facebook. :)
Anyone ever who tells you “god has a plan” or “is looking after you” or “has burdened you for a reason” is being a total jackass. They don’t want to say anything actually supportive or use their brain, so they are just dismissing your life challenges with a magical hand-wave… as well as passive-aggressively casting aspersions on any faith (or lack thereof) you possess.
Hi Cara… Wow! Heart rendering stories and full of the love and perseverance of mothers. My story is that I am 56yrs old and rearing my 2 1/2 year old grandson because his mother, my daughter, has schizophrenia and is too unwell to look after him. When we started caring for him full time at 9 months he was so ill. He wouldn’t make good eye contact, was clingy, had sensory issues, twitched continually in his sleep, wouldn’t sleep for long and was at times quite violent. In many ways, he was like his mother when she was very little but she wasn’t as bad! It was then that I came across the GAPS diet. I started him on GAPS along with my husband and myself. What I didn’t know at the time was that I had a sensitivity to gluten and so I was heavily de-toxing, suffering from brain fog and headaches and trying to ‘get my head’ around the cooking. That’s where your two books were so helpful… a God send! I relied on them for months. THANK YOU! GAPS totally turned his little life around. After 18months he is a happy, content little boy with no sign of sensory issues. He is now on a gluten and milk free diet and doing so well. But that’s not the end of the story! My eldest daughter’s little girl was seriesly ill. She was almost three and had severe behavioural problems, poor eye contact, hyper active, would not relate to others and violent. I brought my daughter and granddaughter down to where I live in the country and we did the GAPS diet for only a week. In that week my granddaughter calmed down, began to relate, for the first time in her little life initiated affection towards her mother. It was truly amazing to see. So my daughter was convinced and kept her on GAPS. Later my daughter found out the she had celiac’s disease and it was likely that her daughter had it as well – but of course, on GAPS little Emilie was rapidly improving. Now about 8 months later, Emilie is a sweet almost totally developmentally-normal little girl. She still has some language delays and sensory issues however, I believe the GAPS diet saved her from becoming more seriously ill with possibly even autism. I am forever grateful that we found GAPS while my grandchildren were so little. In trying to help my schizophrenic daughter I have found mega-vitamin supplementation (in particular VitB3 and VitC) to have amazing benefits. Hope has revived within me! Her story is amazing and if any parent has a child with schizophrenia please encourage them to search out the research concerning orthomolecular medicine. Perhaps this is something parents could consider along with GAPS for their SNC. I would never have thought that diet (and vitamin/mineral supplementation) could have such life changing effects on such serious conditions. Thank you again Cara for your posts, your generous heart and fabulous cook books!!
Truth!
Are you working? Ft/pt ? If so, how is it going? How long did you take off of work to deal with a SNC?
I work about 30 hours a week from home (I run this blog- it’s our income, I’m also a single parent) Working is by far the hardest thing, it seems like there are so many things that come up that end up taking priority over work.
i’m 10 years old and have a brother with down syndrome i love him very much. your article is very true about our family. i would have hoped that you living a life with a child that has special needs you would be a “people first language” advocate. I am and I am only 10 years old. You should say a child WITH special needs or CWSP if you need to abbreviate. NOT “a special needs child” or SNC! Please start thinking about this when you are blogging. You wouldn’t want someone to say “hey, look at that special needs kid or that allergy boy or that eczema girl”. Please be considerate. Thank you.
Hi Ben, thanks for stopping by and leaving a comment!
I’m aware of the people first language movement, and I choose to use words in the order that they come out most naturally, and in our native language, adjectives are placed before nouns. For the most part I just talk about her as my daughter, nothing else, as i talk about my typically developing son (son with typical developmental progress?) as my son.
Occasionally I’ll talk about my green-eyed girl, energetic son, older daughter, younger son, etc. I feel like people first language makes it sound like us parents are exclusive and further alienates us from families with typically developing children, the last thing I want to do is alienate ourselves because other families are afraid to offend us by their wording. I even say ‘normal’ when talking about typically developing children occasionally.
As with most everything, it’s all about tone and intention. Even if someone is using people first language and by their tone I can tell they are condescending to my ‘girl with special needs’, I would find that offensive.
That said, it’s great that you’re standing up for what you believe in! Keep it up, it’s one of the best traits to have :)
thank you for your reply and your opinion.
however, even if it comes out naturally in our native language it is still as you should know it is better to speak about the child and not the disability first. it may be easier to say it that way but nothing worth it is ever easy.
my question is when you have a captive audience and can teach and educate others about what families feel that have children with special needs why would you fall short of striving for the best. It is like saying i don’t have to try to get a C so why would i try hard to get an A.
my brother was born when i was 7 years old. I have always been understanding of others differences. I have severe tree nut and peanut allergies. So, I know how it feels to be different on a much different level. The main difference is that I am able to express it and advocate for myself and others. I feel that if my brother would be able to stand up for himself he would never want to be know as the special needs child. In fact, i know that all of my brothers friends and family feel the same way.
just because its easier doesn’t make it right. my parents tell me you always need to strive for the best and although your article may help others gain perspective on the matter. It doesn’t full help our community. In fact, i take this very personal and it makes me sad to hear that you wouldn’t want to change it for your daughter. You have the power to make a change but you choose not to which saddens me.
I have been advocating for Jake since he was born as well as any and all kids that need a voice. I will continue to do so. Even a typical kid that may happen to have red hair. Just so you know, they don’t want to be called a “red head” or a “ginger”. They just want to be a kid.
I hope that you will consider changing your word choices.
Thank you so much for putting this into a great article!!! I have a son with 7 different mental/emotional disorders and a daughter that has severe cerebral palsy. I really to each and every one of the 10 points you made. I posted them on my groups. I hope that is ok. Thanks again.
Hi,Everyone. I have a 16 year old son with autism and he also started having gran mal seizures 3 years ago so I understand what it is like to be a parent of a child with special needs. But we also have to remember to not allow it to define us. Each of the things listed seems like a wall we put up and define ourselves with. I read a quote by Carly Fleishman and she wrote, I don’t allow autism to fine me, I define autism.
I wish people wouldn’t judge when they see myself and my son, but I also need to give them the opportunity to learn with them if they are ready to learn about children with special needs.
I am the parent of a 12 year old “special needs” child. He was born at 23 weeks and developed fairly severe mental impairment. Physically he runs and does as all other kids. His inability to talk is his biggest obstacle in gaining acceptance with peers and others. I give kuddos to all parents with special needs kids who live with it everyday and never expect anything but to be accepted as well. We all want the best for our kids and want to give them every opportunity to gain as much independence as possible. I agree with all 10 points made above and then some. I love when people ask about his disabilities and don’t ask “what’s wrong with him”!!! That absolutely makes me crazy and my customary response is “NOTHING”! Hugs and prayers to all with a special needs child. We are truly the lucky ones!
I manage a residential program for a company that serves intellectually disabled adults. The clients I serve are primarily ‘mildly’ disabled but various medical & behavioral needs can make being a caregiver exhausting. My staff and i, however, always eventually go home to our own families where we are able to rest and recuperate in order to return and serve again another day. I have always been amazed at how difficult raising disabled children at home must be. You must deal with the energy and crises 24/7. Frankly, I am often amazed at the wonderful things parents are able to do for their children, often with inadequate resources. I tip my hat to all of you!
Hi Cara, I think it should be said that Autism is in fact (as in, the DSM of Mental Health Disorders) a different neurology. We can’t change the way a brain is wired to function with a diet. If someone is on the autism spectrum, then their neurology is different from that of a neurotypical person. I do agree that experimenting with different diets can help some autistic symptoms such as sensory issues, hyperactivity, cloudiness etc. but to suggest that Autism can, or NEEDS to be cured, is not just inaccurate, it is plain out insulting and damaging, not only to autistics themselves, their families’ and the entire community, but it breeds false hope to vulnerable people who are new to their diagnosis and the special needs path. There’s no harm in expressing ‘what helped my autistic child deal with her symptom’s’ by any means, but what you have stated this article off with regarding the diet is wrong on more levels than I wish to expand on, and one can only hope, for the sake of all involved, that you see the bigger picture and cease to continue such writing.
Carly, I don’t know what you would do with our case, we had an autism diagnosis according to the DSM-IV at age 4, with the classic signs of autism, and now at age 6 she no longer can qualify. She’s not ‘normal’ and still carries the developmental delay diagnosis. If I could get someone to diagnose her with autism I would jump on that, just because then she would qualify for more services. But she doesn’t meet the diagnostic criteria any more, and she’s no longer on the diet. Autism isn’t diagnosed by a brain scan or blood draw, it’s diagnosed based on presenting symptoms.
Carly, some people do, in fact “cure” autism. I personally know several people who have cured their children. For every single person I know who has cured their child of autism, it has been a combination of diet, supplements, and therapy…usually ABA Therapy. Of the people I know who have cured (recovered) their children, at least two of the parents were told that their children would NEVER talk. One mother was told that she may as well start looking into institutions for her son because it would be too difficult to care for him. He had an IQ in the 40’s. After 5 years of ABA therapy and gluten free diet, he now talks, has at least an “average” IQ, is in the “correct” grade for his age, is mainstreamed with no aide, has friends, and participates in all the “normal” activities of a boy his age. The other family also had a similar story. I also know several families with children who have autism who may not have fully “cured” their child with diet and/or ABA Therapy, but did make huge life changing improvement for the better. ABA Therapy does, in fact, help grow neurological pathways in the brain.
I am the Father of 4 children 2 of which are SNC. My oldest boy was diagnosed at 13 and we also have a 4 year old who is showing the same signs as his older brother. I have no idea how to work with either one. I work outside the home and my wife stays with the children and she is AWSOME with them. We are completely overwhelmed and have no support base where we live. What can I do as a Father to help and to get help for my boys? I love them with all of my heart and want them to be happy. Any help would be greatly appreciated.
I would look up Youtube videos of the Sonrise program, we didn’t do it full time, but it taught me how to engage with my child despite her differences :) You sound like a fantastic father!
D Lamb, please use face book and follow Bill Nason on his page Autism Discussion Page on Face book. There you will more valuable information on what to do and how to understand your children that you can get from any other single resource. After years of searching and researching and trialling, I can say with confidence, this is the best resource possible. Good luck and start reading, the sooner, the better! Kind Regards, Carly
You and I agree here for sure, I love that facebook page!
Very true, it is diagnosed on presenting symptoms. Autism is a neurological disorder that cannot be ‘fixed, ‘cured’ (that is for diseases – and autism is not a disease) or ‘overcome’ and although the symptoms often improve as the nervous symptoms develops, it is a permanent disorder. A person is either autistic, or is not. So in your daughter’s case, it is likely that she was either wrongly diagnosed to begin with or she is in fact, autistic. (which if so, will likely be seen through social deficits with her peers) Global Developmental delay is typically ‘apart of the family’ of autism, (of course, it can also be on it’s own) as are other disorders such as ADHD, Anxiety, Sensory Processing Disorder, OCD and Dyspraxia. The GAPS diet may have rid your daughter’s body of what was interfering with her development, symptoms that ‘presented’ themselves as autistic behaviours, just as the GFDF diet helped my 4 year old with his, and may or may not be doing the same with my two year old, too soon to tell. Yet, they are still autistic individuals who have completely different difficulties and delays to each other, and if they are going to grow up to be confident and capable adults, I need to respect and support their different neurology in every possible. If you have a moment to understand more of where my issue with ‘healing’ autism derives from, please refer to Karla’s ASD Page on Face book, ThAutcast on Face book (two very successful and highly respected autistics who are strong figures in the Autistic Community and are speaking out in hope of education) or http://emmashopebook.com/ – a Mother, just like us who has walked a longer path than both of us. I’m am sure that the GAPS diet can help many people in many ways, including childhood development, and be very successful for you, just without the Autism referencing if you could be so kind to give Autism the respect and understanding it is so desperately fighting to get from the world. I do wish you and your family all the best and I thank you for your reply. Kind Regards, Carly
I’m so sorry that has been your experience or is your reality Carly. It’s a crime that people are left to believe as you are and only a fraction find the real answers as to the cause and the cure. Hopefully today’s testimony on Capitol Hill will help to bring to light that there are answers, they are just not a part of the standard of care once an autism diagnosis has been given, YET!
Today in Washington, two highly respected members of the autism community, Jill Rubolino and Jeanna Reed, were given the opportunity to speak to the IACC. This is an incredibly important day in history because now, they can no longer say, “We didn’t know.” Because now they do and they MUST DO SOMETHING ABOUT IT. There r far TOO MANY moms just like Jill and there r far more who never discovered the truth on there own as we did and whose children r not recovered. This must stop. The following is Jill Rubolino’s testimony:
My name is Jill Rubolino. I am the mother of a ten year old son who is recovered from autism and also a co-founder of the parent support group AIM, Autism Is Medical.
I appreciate the opportunity to speak to you today.
This is my first time attending the IACC meeting and I am appalled at the tremendous disconnect between what is discussed here and the reality of what is happening to hundreds of thousands of children and families in our country right now. Because I have only three minutes, first I’m going to read ten statements of truth followed by three requests.
1. Thousands of children become sick first, and then get diagnosed with Autism later.
2. Their illnesses create symptoms that are interpreted as behaviors ONLY because physicians deviate from the basic practice of medicine and no physical or diagnostic assessment is ever performed.
3. Those “behaviors” are funneled into a diagnosis of Autism and the child is left untreated and becomes sicker.
4. The parents are left to fend for themselves.
5. There is no assistance or support.
6. The children suffer in extreme pain while health care providers refuse to assess their pain and refuse treat their pain. They use the excuse that they cannot assess their pain despite the existence of multiple standardized pain assessment tools which have been developed for every patient population including nonverbal patients. Pain has been considered the fifth vital sign for over ten years and it is every patient’s right to have their pain assessed and treated as stated by the Joint Commission.
7. Bowel disease, seizure disorder, immunological dysfunction and mitochondrial disorders are the norm in autism, not the exception so verbiage used to refer to these things as “rare” needs to stop.
8. These illnesses are not comorbidities but causation and they need to be investigated.
9. In the seven years I spent recovering my child, I wasn’t even aware that this committee existed, nor am I aware of anything that has been accomplished by this committee. Nothing you’ve talked about today has helped me, my child, or any one of my hundreds of friend’s children which means you are painfully ineffective.
10. Medical neglect and discrimination against this exponentially expanding acutely and chronically ill pediatric patient population will not go unchecked. Our children deserve the same access to appropriate healthcare as every other patient.
Here are my requests:
1. At 1 in 50 children diagnosed as autistic, our children statistically outnumber all other pediatric illnesses. I request that this committee address this as the emergency that it is.
2. I request a medically based standard of care for autism be developed and implemented across the broad spectrum of all health care settings starting with the pediatricians. The first intervention should be a diagnostic test, not a referral for a developmental screening.
3. Lastly, I request that this committee recognize that they are responsible for their own direction. Failing to make the medical needs of these children a priority is endorsing the continued denial of appropriate medical care and subsequent medical neglect of a generation of children.
Apologies, last post that was directed to Jennifer, not Cara.
Glad we both like Bill’s page!
Hi Carly,
I implore you to read the GAPS book by Dr. Natasha Campbell McBride. It is such a wealth of information from a Doctor whose background is a neuro surgeon (brain surgeon) who studied relentlessly to cure her own autistic son.
Once you read the book and understand the concepts and interactions between the digestive system and the brain (among a host of other things) you can more fully understand where these moms are coming from.
You owe it to your own children to FULLY RESEARCH every avenue of hope for them. I know you only want the best for your child, so pursue this topic ruthlessly. There are many, many viewpoints on autism – that autism CAN’T be cured is only one viewpoint. Please research thoroughly all competing viewpoints with an objective frame of mind before dismissing them.
I believe in GAPS as sound medical approach which restores the proper balance of the body. I would be more than happy to post you my copy of the Book + Recipe Guide if you decide you do want to research and explore this avenue of healing and hope. Believe me when I say you will change your child’s lives for the better with effects to last their entire lifetime I know they will be for-ever grateful.
Sometimes concepts come along that are totally foreign to our already established beliefs of what we are “told” is the truth.
Have the courage to challenge your perceptions.
If you DO research GAPS and you decide it isn’t for you – what have you lost? But if you DON’T do the research and it could have changed your life……. Despite what we are told by the mainstream medical fraternity, we do have the power to take charge of our own health and turn it all around!
In Kindness,
N
Hi Nicola, I really appreciate the response you have written, you are clearly a very kind and giving person. You are also very correct in saying I have nothing to loose, and that I owe it to them to try everything to help them in their development.
I don’t disregard for a minute that we have the ability to help with difficulties them through different avenues and I absolutely have no problem in challenging perceptions for my children’s gain. When my eldest was 2yrs 3 months I read that the GFDF diet will cure my son. Within 3 weeks, we noticed he was calmer, more tuned in and his speech sky rocketed from there on! We’ll never know if that was a coincidence in timing with his developing nervous system, but we have never been willing to take that risk to find out by taking him off it. I have never always been an advocate for exploring ways to help our children. He is still autistic of course, but it did help him develop and now he is managing well with his autism and it is not interfering with his growth in any other way than socially at this point. I am open in sharing my son’s progress on this diet, but I am always careful to add to the other mothers at his intervention centre or online that this diet won’t necessarily have the same affect on your child, or reference in any way to my son being somewhat ‘cured’, not only because he hasn’t been, but because I don’t believe it’s a single person’s place to say anything with such certainty that all will benefit the same. Sharing is a beautiful and powerful thing, I just think we need to be careful in how we do it. And although I don’t believe personally that a genetical and neurological disorder can be cured, I certainly believe that all disorders can be helped! (My husband’s daughter has been diagnosed also, but with Asperger’s, so the genetical link is quite unquestionable for us. Latest science has shown autism develops in the womb within the 1st 12 weeks of gestation)
I just wanted to ask you, my youngest is 22 months, has an ASD diagnosis at 13 months. He has always refused solids, and has been on Neocate formula (since birth) which is dairy free, gluten free, additive free etc. I can’t see how a diet change could help him if he doesn’t eat solids, unless in your opinion a formula or his Rice Milk could be harmful? Just hoping for your insight there, if you would be so kind!
I absolutely shall try switching my, almost 4 yr old’s, diet from GCFC to GAPS because it could further help him. As for my youngest, I can only hope the Rice Milk and formula aren’t preventing development. I kindly thank you Nicola. You are a lovely human being. Kind Regards, Carly
I can appreciate your situation really I can I have a child who they said was autistic and really he was at that moment. But after diet changes A Lot of his behaviours improved and we could finally get his REAL diagnoses of Chromosome 15q duplication syndrome.
As for the Rice Milk you really need to be careful it can contain HIGH levels of Arsenic which is not good for anybody’s body. I have personal experience with this one. When we had my son’s blood work done his arsenic levels were through the roof so it’s something you need to consider.
Carly, I think the issue is from one mention of a diet in a post that isn’t about the diet, you’re jumping to conclusions. I say over and over in my GAPS posts that GAPS *may* help children with xyz condition because these conditions usually are rooted in the gut.
We did the GFCF diet and saw (as close as I could tell) complete healing for 3 days, then regression. A month later we started GAPS and didn’t get complete healing to ‘normal’ but we got enough healing that she doesn’t act autistic any more. I’m a big fan of the diet (it healed my son’s eczema as well, and my dairy allergy) because it helped us so much, not for any other agenda.
Hi Carly,
With your research for GAPS diet, you may want to read up on the section for babies and infants. That might give you some ideas for some liquid foods (like maybe the broth?!?!?!) to start on additional foods. Of course, you also want to be working with whatever health care practitioner you might be working with. I don’t know what issues your youngest child might have that he (or she?) is drinking formula or rice milk. Another resource might be the Nourishing Traditions Book and/or the Babies/Infants version.
I have a daughter who has autism. We started GAPS diet almost 11 months ago. No, I have seen no miraculous improvements to her autism behaviors. What I have seen has been a huge improvement in her immune system. Prior to being on GAPS, she was getting strep throat a lot. And sinus infections. She was on round after round of antibiotics. The doctor was pressuring me to have her tonsils and adenoids removed. We started full GAPS and then a very long Intro and within 2 weeks of starting Intro, the sinus issues disappeared. My daughter had rashy private parts for years, where we were using diaper rash and/or antifungal creams. The area was cultured and they couldn’t figure anything out. I had doctors in 2 different states (we moved in between all of this) tell me that “sometimes girls just have these issues”. Well, the rashy private parts have pretty much disappeared. We went from using some kind of topical creams nearly daily to just 2x in the past 9 months. My husband, who was very skeptical has noticed a positive difference in our daughter’s health as well.
I will also say that we had a lot of specialized medical testing done by an alternative provider. And we were stunned to find out that our daughter actually does have a number of gut issues. She isn’t digesting fat, and it’s possible she might have celiac (although since we are so far from having any gluten, we aren’t pursuing further testing until we would be at the point in GAPS where we would be ready to start having sourdough bread). She has a number of digestive issues that just stunned us. We had the testing done back at the beginning of the year and are planning on re-doing the testing in a few months to see if GAPS has helped heal these issues.
We had tried GFCF diet several years ago and we saw no changes from that. We had been eating organic since before our daughter was born and continued. And when I say we ate organic, i mean our daughter had never had a soda pop, fast food meal, etc. If you asked her what McDonald’s is, I don’t know that she would be able to answer that question. So our diet wasn’t as bad as the overall general population’s to begin with. But GAPS took it to a whole different level. GAPS and learning WAPF nutritional ideas.
So this type of testing might be something you would want to research as well.
In the mean time, after years of pursuing trying to get ABA Therapy, we have finally gotten that in place and will be starting an ABA program later this month. In our case, I do not believe that my daughter’s gut issues are causing her autism. Or even contributing to her behavior, as her behavior has not improved at all in almost a year being on GAPS and much of that time spent in the Intro Diet. There are plenty of children who have gut issues and other health concerns that don’t wind up having the symptoms of autism, although clearly there is also a population of children who have these types of “co-morbid” issues that are linked to autism. I have a lot of hope that the missing piece is the ABA Therapy’s ability to help build neural connections.
So ABA Therapy may also be something you may want to research. Dr. NCM is also a proponent of ABA Therapy. It is mentioned in her GAPS book. I know that I was able to use some basic technique to get my daughter eating some of the GAPS foods. I initially had to reward her with 5 minutes of TV time for every 5 bites of stew (and some other foods) that she was eating. Within a few months, her reaction to stew went from “yuck, what is this, I’m not eating it” to “YUMMY!!!! STEW!”
My husband’s parents came to visit for a few days over the summer. They had last seen her when we started the Intro Diet. They could not believe all of the “adult food” she was eating and asking for more of, versus the typical scenario of the adults having food that kids “won’t eat” and so eating things like chicken nuggets, pizza, spaghetti, or mac n cheese.
GAPS is a LOT of work. And even after almost a year, I still break down some weeks just feeling overwhelmed at trying to figure out what to eat for the week, how I’m going to get everything cooked and cleaned up, and sometimes being bored with what we are eating especially since we have yeast overgrowth and are also limited on fruit, honey, and sweet vegetables. In April the practitioner that we are working with said that we are both susceptible to a particular folate disorder that kicks in with ANY dairy. There is 1 lab in the world that can test for it and it’s currently not in operation because they are building a new facility. So we wound up eliminating all dairy. So no butter or ghee. No kefir, no yogurt, etc etc etc. That was really difficult. But we are managing. GAPS is definitely not for everybody.
And then the more I learn about our modern processed food, I don’t know how we would ever go back to eating how we were before anyhow. I could see us transitioning into more of a WAPF diet, where many of the whole foods that can’t be eaten on GAPS can be eaten such as potatoes and quinoa. But I can not imagine how I could, in good conscience, give my child any pre-made, packaged foods.
I have seen children cured of Autism, and by cured I mean that they no longer are on the spectrum based on these behaviors that point to this disorder, and therefore no longer are classified as autistic by any medical professional. It is not disrespectful to the child or the disorder to take joy in the strides of children, who have to date, been plagued by behaviors that they couldn’t control or understand for years. And speaking of Autism as if it is a living, breathing, Human, instead of a series of behaviors working within a real HUMAN is really far more disturbing to me than having faith that they have been healed. Faith moves mountains, even neurological ones, and I would imagine that the Autistic community needs all the seeds of faith they can get their hands on.
Okay, so even if she still has autism, I find that saying she has autism now is disrespectful to the families who are dealing with ‘real’ autism like we were, especially since she doesn’t meet the diagnostic criteria for it (as I’ve said before, I’d happily take an ASD dx just because I could get her better school services). I put her on a super restricted diet because *I* couldn’t parent this child adequately at all while she carried the autism diagnosis and had to try all the options available to get something under control.
If she never had autism, then how is that respectful to what we as a family were all dealing with when she wouldn’t make eye contact, didn’t talk, stared off into space, and opened and closed doors hundreds of times a day, screamed and cried all day long and never slept for more than 2-hour stretches? Was it something that the psychologist and I made up?
I understand brains being wired differently- I grew up with a processing disorder (and an IEP), but I don’t believe that it’s fair to say that I’m autistic just because my brain doesn’t function how the average brain does.
Watching my son with autism that was most certainly real, and watching him recover I am grateful that I’m limited in believing this wasn’t possible for him.
It is my belief that autism, particularly regressive autism as my son had, is similar to a stroke in that the inflammation causes the brain to stop functioning correctly. When someone suffers a stroke we provide a great deal of support for rehabilitation so perhaps ‘recovery’ is the best word for those who overcome autism?
Please don’t dismiss the experiences of families who have travelled this road. We have lived with the hardship of life with an autistic child, we do what that is like. It is real. We have also been through many long days of hard work to help our children recover and a pat on the back would be wonderful.
Amen!
Carly,
I really wanted to pass this one. It’s such a delicate and touchy subject. I just couldn’t help but wonder if you have failed to do the research or you just can’t believe that autistic children are recovered all the time?
I’m really stunned at your comment.
Have you spoken with mothers of children that did or do the GAPS diet.
Are you aware that Dr Natasha McBride (creator of GAPS) recovered her own autistic child with diet?
What about all the kids that are being treated by Lyme DR.s that have been recovered?
If these children can not be “fixed or cured” then why are they responding to antibiotics?
https://www.youtube.com/watch?feature=player_embedded&v=yOno_2m_8LY
Exactly! All things I’ve said on my blog at different points in time in one succinct list. Very good! Shareworthy!
Omg he is drinking a litre of it a day. Will have to change that asap. Very interesting about your son, glad to hear you got the proper diagnosis. Thank you so much Crystal.
Carly,
I have something to say in support of Cara. Once, I had a family member challenge me on something I posted on facebook, that was about me and my life. Just as FB is about each of us individually and what we want to post~ so is Cara’s blog. It is about her journey to help her daughter and her desire to possibly offer guidance and hope to others, who are interested. We have tried many therapies, supplements, diets, learning techniques to help our son. Some didn’t work, some did, some I heard from specialists, most did not. New hope, new schools, new people, new “leap of faith” change of diet.. let’s give it a try.. it’s about HOPE and advocating for your own child and sharing with those who are interested and want support from others.. Our journey, is not easy and support from others vis FB, blog, support groups, where-ever, keep us strong and going, there is nothing easy about life with a special needs child and the family unit. We do the best we can. I recently joined Cara’s blog because I wanted to learn more about the GAPS, maybe it can recover my child and maybe not, maybe it will help. Our son has come along way, and any of our cheerleaders will tell you that our son has come far due to our diligence and advocating for the best for our son.. It’s each parent to his own, it’s an easier journey with folks like Cara and countless others who are there to offer a glimmer of hope. I loved her blog, and found it very reflective of my own life. That being said, I wish you, Carly, the best on your journey in advocating for your children.
As a Special Ed. professional, I would like to share the admiration I have for Special Needs parents and the kids themselves.
Hi Cara, I think it’s very kind of you for wanting to share your journey and successes with the diet with others, and I am willing to try it also in hope of progress for my son too. It’s just that I don’t read ‘May help your child’. I read ‘GAPS heals autism’, not just in the opening paragraph of this article, but in the link to your GAPS diet website that this page started right off in providing. In agreeance with Tracy above, I completely respect that just because something worked for someone, doesn’t mean that everyone will have the same success, as there are no guarantees about anything in this field so we trial in hope for positives outcomes and celebrate those with each other.
I found the article itself well written and I could relate with it.
All the best, Carly
I am a Special Education Teacher and appreciate this article. It is very well written! Excellent! I have been teaching for about 20+ years and will be passing this along. Something we would like for parents to know: Teachers are not heartless when we have to pass along news that parents don’t want to hear. Plus, we are many times parents and grandparents of special needs children and feel the pain just like everyone else. Thank you so much for your article.
Thank you so much for posting this. We adopted three children. Two of them have Fetal Alcohol. I am sitting here with tears in my eyes because you poured life into me. I have been very frustrated lately, and you told me that it is ok to have “me time”.
Beautiful written. Concise. Accurate. Such an important share. I am a retired educator. I spent most of my career with children “on the spectrum” and my personal opinion is that each and every one of us stands some where on the spectrum leading me to passionately believe a little understanding coupled with kindness and compassion can go a long way in educating the uneducated. You’ve done that beautifully. I wish I had the opportunity to work with your child and your family. Keep advocating. Keep asking the right questions and remain vigilant until your child, and every child, gets what they need to participate in society. Best wishes.
I stumbled across this article while looking for something completely different altogether but I did I fact find this quite interesting. I’m a 14 year old girl suffering (sounds slightly strange) from ADHD, anxiety problems and a number of other problems that come along with it! I have a older brother who has much stronger needs than myself and has done for many years before me! So even with my own problems I would actually consider myself almost traine to be normal and therefore understanding of other people. But sometimes I don’t quite realise how much effort it must truly be for my parents having to cope with both me and my brother! It’s quite amazing and I know how difficult we can be sometimes so I respect those parents out there which put so much effort in to loving their SPC even in the hardest of times! We really are a handful!
Thank you so much for posting this; I’m sharing it with others to help them understand my family. ~ single mom to a SNC and 3 other children
I have a 29 year old son with Prader-Willi Syndrome One of the main issues with PWS is insatiable appetite and they gain weight very quickly on few calories,due to having more fat tissue then muscle mass. So because of this they keep them on a very low fat diet!!!!! YIKES!!! Of course I did what the medical community told me to do at the time.. I just finished the nutritional therapy practitioner program with NTA and ,reading GAPS now. I wished I had known what I know now when my son was little. He lives in a group home now and getting them on board with a change in diet is very difficult. I’m doing what I can. He has anxiety and issues with skin picking as well as constipation. I’m hoping to get Dr. Natasha to present at the next Prader-Willi Conference.
I am a concerned grandma who has my divorced daughter and her two children, ages 8 and 6 living with us. The 8 year old girl is diagnosed with PDDNOS and is severely ADHD . She is the happiest, sweetest little girl and her main concern in life is her little brother. She is in second grade this year and her main problem is focusing in school. She almost always needs one on one to keep on task, which is not available in her school. Her Austic signals are not very much eye contact, and repetitive behavior. She is on a med from pediatrition for add which is called vyvanse, which is the best for her out of the two options the Dr has tried. It does not help her focus like a normal child, but it keeps her from being under her chair, on her desk, wiggling, basically being able to hold still. I am the main care giver for the two kids because their mom works long hours then comes home and is exhausted. I have been wanting to try the gluten free diet and then my granddaughter’s dad showed me your story. I ordered the book but haven’t received it yet. I want the very best for my granddaughter. Just feeling overwhelmed and not sure where to start. I realize you must be a busy mommy, but if you could ever reply with some suggestions it would be greatly appreciated. Criss
Hi Criss, if you sign up for my newsletters (either one, they’re both on my sidebar to the right) they both have a free email series that walk you through how to start. Hope that helps!
Cara
Hi Cara,
Thank you for those insights; they are very helpful.
Do you have any issues/strategies you can share from a dad’s perspective? I am looking for input from fathers of children with disabilities, and how their parental roles are shaped by the disability.
Great writing! You definitely hit all the points! I have 3 children. My oldest (23 years old), is severely Autitstic. He walks, but does not talk and we are still potty training! He was injured by the DPT vaccine when he was 4 months old. The Dr filed the report with the NAtional vaccine injury reporting system. The “P” portion of the vaccine (Pertusis), was “live” at that time, and injured his brain. He us is on a GAPS diet. We also did many years of Neuro-Develpomental programs at home which were very helpful. He has always been home schooled and at home with us. We are blessed to have him. Thank you for writing.
Wow, just wow…I found your website last night while looking for the poem about Amsterdam (the addition to the welcome to Holland poem). It seems as though I was giving an article at some point of our journey where we could read about “grieving” for the child you won’t have. I feel it at times, because I hear Moms talking about their daughter/son getting married or going to college and I think to myself how my son may never get to experience those things (although I always try to stay positive, yet realistic). I have a son named Zack and he is 12 (my only child). He has a neurological disorder called lissencephaly. His is rare because it only affected the front of his brain incomplete lissencephaly). He has sensory issues, he is still not fully potty trained, he is VERY impulsive, he has apraxia of phonation, is developmentally delayed, has mixed receptive-expressive language disorder, and is hyperkinetic (a state of overactive restlessness, particularly in children).
It is so hard for other people (even my family) to understand what we go through as SN parents. You hit on so many of those and I just wish I could post that on my face book page to help them all my friends understand, but I do not want pity from people, you know? I’ve had Moms tell me “I wish I could get free preschool” and I just ignore those ignorant people. Although he has all these issues, he has come a long way and is making progress and his neurologist has been impressed with how far has has come.
Just wanted to say “thank you” for putting all that into words…because I’m thinking I could just email it to them and maybe help them understand just a little bit better and get a glimpse into our world. ==Wendy
I as well have a severally handicapped and she will be 43yr this coming Aug.11. I has been most definitely hard,extremely difficult, but when my daughter wakes up every the one thing that I have to look forward to is she comes and gives me the biggest and the best hugs and that makes my day. She has what is called Pierre Robyn Syndrome, it has to do with the ears, nose and throat. At 6 mo. she had to heart surgery, then at 18 mo it was time for the palate surgery. I believe that for when she was young these were the scariest and stressful, the fear of what could happen in any surgery but when you have a special needs child or even an adult, you never know what might happen, at least in my case. They told me when I pregnant with my yonger daughter that Liana my special one would not live to be 12 yr. That scared the hell out of me, and from that moment I was thinking of my unborn daughter and also my special angel. Well I am happy to say she is almost 43yr . She is so healthy thank the Lord, and she is ever so smart she amazes me at times and I am around her all the time and she would wow me I was oh so proud.
It has not been an easy road, I have been marries 3 times and in the process of getting a divorce. That is just one of the things and maybe the biggest thing is the relationship between a husband and a wife or even a couple living together and they are a family. Which with any special needs child there are so may strains on a family. then if there siblings there is a form of jealousy because you have to spend time with your one child and so as time passes by there is a resentment. /this is not mention all of the other major everyday feelings that for you are compounded on top of each other to try and juggle so many things and hope that you are doing the right thing, you are tired and under stress and with no time to yourself it does make it very hard at times and I am not in any way ashamed of say this, there are times that I have to just walk away so outside or lock myself in the bathroom for just peace. I have not had a break from my daughter for several years now. I am not even sure if I could do it because she what I would be thinking of he entire time I was on my own time
Well I just wanted to do is to say to the other parents out there with young children with special needs. Don’t always believe the doctors and there thoughts because I found that if they don’t know they tend to just try to wash it away. Ii have had thoughts of suicide and I also deal with depression , yet I love her and she is what keeps me going. My relationships have ended friends don’t stay around to long because I am 61yr and they are out traveling seeing the world, but I will laugh and say I have a child that never wants to leave home. I do believe that God gave her to me because he knew I would be able to care for her no matter what and I do that and I have had words with the best of doctors and the worst of them. I work for the county that I live in and they know if they hear from me that my daughter needs something and so they might as well give it to me because I will bug them and will that I will take nothing than I want for my daughter. The patience seemed to go out the window as I have gotten older her too. But we love our special needs kids as much as we can and we do any and everything to keep them safe and they get the things they my need. It is a rough road to haveto travel but I would not have it any other way. She very intelligent understands everything we say and she know when I tell her to pick up her toys if she wants to stubborn well then I will take her and the toys are picked up. There are days that I am not even sure if I will make it thru that day, you see it is just me and my daughter I am her mother and father and her sister and nieces and nephew and grandparent all rolleds in one.
they have nothing to do with her so I tell her its me and you baby girl and we will be great no worries/ Sorry\\the length but there is so much inside of me I have thought about writing a book. Well I want to say thank you so much All of us that do pretty much give our life for our special kids for one that has done it for
43 yrs when she is happy and has that smile she gives me it is all worth it. As far as the so called programs that they have for our kids I have only been able to use them when she was 6 months old So I guess now I am the one that won’t beg or play there silly games and I will not put her thru anything that I feel is not needed.So that is on me but I am so very proud of my daughter and I thank the Lord for giving her to me and that she is in good health . Thank you Janet3
Thank you for this, Cara. It resonates deeply. The only thing I would add? That childcare piece? It doesn’t go away for many of us. My daughter is 19 and must be supervised at all times. Finding and paying for quality care far beyond the ten or so years expected for most kids is an emotional and financial drain many don’t realize!
Hello I enjoyed your posting. I’m wondering how one gets
A medic bracelet. This would be helpful for the airplane. My
Girl is extremely high functioning so if she flies
In to a panic people don’t understand.
I just bought one online :) I chose stainless steel. If you do a search, there are quite a few companies out there that make them
Hello I am the grandmother of a 6 year old boy who has special needs, but as yet has no diagnosis! as we speak he has been put in isolation at school and has been there for five weeks now while they look for a new school for him! I hate this situation and feel it cant be allowed to continue! He is a very loving child and highly intelligent. The problem is he cant concentrate for any longer than 5 mins at a time and is on the move almost the whole time. he does have trouble maintaining friendships with other children and can be very controlling with everybody around him, the reason he is isolated at the moment is because he attacked another pupil three times! I do realise he has to be punished for this but really struggle to accept whaat the school have done to an already emotionally immature child! he doesn’t trust people and is very clingy to his mother and her partner of one year who he absolutely idolises! he often thinks that if people go out of the door hes never going to see them again, but on the other hand he pushes people away with his behaviour. He doesn’t ever see his father at all and I think that has def caused him to feel rejection. ( but that’s another story) I really wish that I could find the tools to help him and his poor mother my daughter!
I’m sorry you’re dealing with this, unfortunately it’s all too common. We had a similar situation, a lot of children will act out when they’re in the wrong environment, and if the problem is their needs aren’t being met, punishing them does not help, it only makes the problem worse. I hope that you can find something soon, we finally found a good school for my daughter, I hope you can find one for your grandson.
Thank you for this. Couldn’t have said it better myself.
Quite simply sweetheart, you are doing an incredible job! I come more from the professional side of things (although I really do not see my self in that way!) I’ve worked in SEN (Special Educational Needs) schools/ with students requiring SEN support for over four years and help run a youth group for disabled young adults. However I am also a carer for a young boy with autism and have an incredibly close relationship with his family, so have seen all the difficulties (and benefits!) of life with a child with special needs. You have to do what is right for yourself and your children and you clearly are!
It’s rather terrifying just how difficult it can be to secure help and advice in this sector, I supported families whilst going through the process of getting a diagnosis and it can be down right ridiculous how little they are actually helped by outside agencies sometimes. Those that are apparently out to help are sometimes the ones that make the problems worse!
You hinted at a slight struggle with afford carers for your children, I haven’t read through all the comments left here so you may have already answered this, but have you looked into funding to help with child care? I don’t know much about funding and benefits in the US but here in the UK there can be a fair bit of help money wise if you apply for it. I know a lot of people feel they don’t deserve the extra money ‘just because’ they have a child with special needs, but in the same way somebody would receive financial help for medical/life altering conditions, it could benefit you. I also know from experience of one child I have supported both in and out of school, that if you decide not to apply for funding until you really need it, the local council may decide you shouldn’t have it at all because ‘you have never needed it before’.
On a completely separate matter, I am well aware how diet can completely change conditions, not in a way that they are cured, but so that they are controlled. I’ve witnessed first hand how the Ketogenic Diet can work wonders in those who suffer from epilepsy.
I’m sorry if this isn’t making much sense, I’m half asleep and was just looking around for slow cooker recipes, came across your site and glanced at a line about your daughter having autism which instantly had me looking for more about your family circumstances and completely forgot about the baked apples that brought me to your site!
I am wondering if anyone has yelled at their child? we did because we didn’t know till recently (last 2 years ) what was wrong with our daughter…we thought she was being rebellious all these years and she had auditory processing disorder. I think I was in denial and I still scold her and sometimes yell at her out of frustration, for sure and after reading this article realize I have been angry not with her but with the ones who caused her disability and I cannot do anything about it. My daughter got vaccine damage and that is where her disabilities came from so I have had a lot of anger at the system (pediatricians, insurance, government etc.). thank you for your article eluded to the fact that as a mom I can’t do it all and I need to take time outs….thank you
Hi,
I just found your page and wanted to say well done, and thank you. I don’t know if I could find the time to write an help others like you are.
There is one thing I wanted to ask. My son is 21 months and has been diagnosed as having a severe developmental delay amongst other various issues. How did you deal with being around other children with typical development. we all know we are not supposed to compare children but how do you stop looking at a 6month old that can do more than a child that’s nearly two, and not be sad and just come to terms with it.
It’s hard, but it becomes easier as you get used to it. Having a group of ‘normie’ kids who accept yours is really helpful too.
I really must say this article and the comments are amazing. They helped open my eyes to another side of the world. I am currently doing an essay and I need a parents perspective. It’s about how parents and their SNC feel about it and how they feel when people give them a “look” ( if you know what i mean) when the child has a meltdown in public. Anything would help!! Please and thank you!! Oh it’s due by this Monday sooo…
Thank you so much for posting this; I’m sharing it with others to help them understand children’s expectations others should not treat this special children apart from other childern we should get to know about them and just spread love
Tracy, why do you have a hard time when you hear someone was cured from autism? I know numerous people that this has happened for. The body is so resilient and anything is possible!
Thank you for this article!! I was on the verge of a breakdown and almost felt as if no one understood, I’m sure you know how that feels. This is so encouraging God bless you and your family.