For Parents Wondering if Their Baby Has Special Needs and Not Knowing Where to Start

This is taken from an appendix at the end of The Empowered Mother.

As a mom who has a child with special needs, I frequently find parents wondering out loud whether their child is showing delays or not. Most of the time I can reassure them that it looks like their baby is completely meeting his milestones on schedule, it just may be slower than other babies.  Sometimes, though, I help them find some more information and help them to find local screening programs or services.

Part of being an Empowered Mother is knowing how to look for help when we need it, and with special needs children, more help is useful!

Below is my advice to parents who are questioning their child’s development.

 

The possibility of having a child with special needs, whether it’s something as small as a slight learning disability or as large as cerebral palsy or a chronic medical condition that requires specialized care, is an anxiety that surfaces for many parents during pregnancy and baby’s first years.

Because babies change so much during the first year, when one baby develops a bit more slowly than another baby of the same age, it can be alarming. In the majority of cases, this difference in development is completely normal.
You can ask your child’s doctor for a developmental milestone chart, or view the many available online. As long as he is considered ‘within the range of normal’ on the charts, there really is not much to be concerned about, even if your friend’s baby born the same week is developing at a completely different pace.

Missing milestones means that they are not completing their milestones such as sitting unassisted, rolling, babbling noises, eye contact, walking, etc, by the late-end range on the milestone charts. Missing one is usually not too concerning, but a pattern of missing multiple, or barely making them by the end of the time on the chart, is worth follow up with a developmental pediatrician to screen for possible other issues or get started with early intervention if she thinks it is warranted.

If your gut really says that something is off, and you want to start services but your doctor wants to wait and see, always follow your instinct and schedule a second opinion if needed.

If your child is missing milestones, or has medical issues (like significant prematurity or a chromosomal abnormality) that point to the child having special needs, Early Intervention is a great resource for many families.

Your child’s doctor should be able to point you in the direction of resources that you can get started with. Sometimes doctor appointments feel rushed, and if you don’t feel like you understand exactly how to get early intervention services, or screening for services, that your child needs you may need to find knowledgeable people in your area that can help you.

Hop on Google, and then start calling to make sure you’re covering your bases. It’s very unfortunate when a family misses out on needed services, or they end up paying out of pocket for services available for free through the school district, just because they didn’t know what was available to them.

When you call, just briefly describe your concerns, emphasizing missed milestones or diagnoses that your child may have. If this isn’t the right place for early intervention, ask if they have any suggestions.

Places to look (a quick Google search should turn up something in your area):
* Disability Resources
* Developmental Pediatricians
* Your local school district
* Regional Centers – this is what many areas call their disability resource centers
* Head Start
* Parent support groups for families with special needs

Deciding whether services are right for you

When you know what is available in your area, you can pick and choose what services work for your family.
When you are first looking into services, you might be surprised that many of them are done in your home. This is because the child is usually most comfortable in their home environment. This saves you time in the car and waiting – I love home-based services!

Some families will do more, some will do less. Some will look into supplements and dietary intervention, some will stick with mainstream therapies like ABA, speech therapy, and occupational therapy. Many families will do a combination of it all.

Coming to terms with having a child that has special needs

While we think about our future, and having children, it’s natural to imagine them growing up just as we did – with normal health and development. When our children get a diagnosis, anything from a small issue like dyslexia to a large life-changing one like autism or cerebral palsy, it is normal to mourn the dreams that we had and to fear the struggles that our child, and our family, may face because of their special need.

As you progress through your new normal of having a child with special needs, everything starts to seem easier. One of the biggest ways you can start to adjust is to talk to families with children that have diagnoses similar to what your child has, or families with a different diagnosis but otherwise they are similar to you. Seeing how other families live their lives after life threw them a curve ball can help you to start to see what your future will look like rather than living in the shock of a diagnosis.

Families ‘in the know’ can help you find services that work with your family, churches and other community groups that are more accommodating to your child if needed, and can provide the much needed empathy as you navigate having a child with special needs.

Reach out as much as you can so that you can find a support system that understands your particular struggles – at your child’s activities, to other parents in their classrooms, even parents in the waiting room at therapy sessions.  Once people know you are friendly and are looking for help or just to talk, often they are happy to help share what they know and lend a listening ear.

You may also be interested in:

You Know We Have a Special Needs Child, Here are 10 Things We Might Not Have Told You

5 Things I learned by having a child with special needs that also applies to typically developing children

10 Tips for interacting with families that have a child with special needs