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  • Writer's pictureChristine McCarty

How I Knew My Child Was Special Needs

I am reposting this as I still get asked this all the did you know? Or even better, when did you know? Then, what did you do?

Please remember, like all things in life, everyone's experiences and journeys are different. This is merely our journey...

With Addy being my second child, I had a little more knowledge about what to expect especially with my oldest being a typical child. During my pregnancy with Addy, I remember that she hardly moved. I would get up in the middle of the night (as that's when babies tend to move the most) and jump around to get her moving. It often took about ten to fifteen minutes. I tell you this, because my two typical children moved constantly. Again, this may only be coincidental, but those moments stick out to me.

At three months, I knew! I knew something was different or at that time, wrong. I say wrong as that's what I felt at the time, and if I am going to share with you, I have to be honest not only with you, but myself. How did I know? She felt mushy to the touch, like her muscles were jello (no tone), she would only roll to one side and when she looked at me, she looked right past me. However, she kept meeting her milestones, so no one else noticed what I was seeing/feeling. Not her doctor (at the time), other family members, just me. I was alone with it for a long time. Yes, I voiced my concerns to family, doctors, but no one saw (or wanted to see) what I saw. Was it a mother's initiation? Didn't matter, but I knew something was off.

I’ve always been a take-action, type “A” personality. After seeing a few different doctors, I found a doctor who really heard me, yet calmed me. To give you a better picture, I am a very paranoid person. In fact, for months while unable to sleep, I would watch videos of spectrum children to see if I saw Addy in them. During this process (obsession) I learned everyone looks different, but there are signs to look for. See Products & Resources for great articles on signs.

By six months, Addy was diagnosed with hypotonia (low tone) and started doing physical therapy. Then at the age of one, others including her new doctor starting seeing what I was seeing. Her speech was limited, her gaze would drift (even though she responded to her name) and her coordination was off.

From age one to about three, we took her to every doctor, while also introducing several therapies - speech and language pathology (SLP), occupational therapy (OT) and more physical therapy (PT) as well as Early Intervention (EI) which is offered to every family in need of help with a special needs child in your home. For more information regarding EI, click here. We even had Addy genetically tested, where we discovered she had a rare, but non-life threatening genetic disorder called Adenosine Monophosphate Deaminase 1 (AMPD1). There's not much research as AMPD1 is not life threatening; however, it tends to be found in children on the spectrum with apraxia of speech. At this point, Addy had not been diagnosed with neither spectrum nor apraxia, but I knew it was coming.

From three to six, we went through different therapists and doctors until we found the right team. It took years to get the right team in place and to finally get the correct diagnosis to obtain the appropriate treatment for her. At age four she was diagnosed with childhood apraxia of speech. It was not until age five that she was diagnosed with Autism Spectrum Disorder Level 1.

Currently, Addy receives speech and language pathology (SLP), occupational therapy (OT), physical therapy (PT) as well as applied behavioral analysis (ABA). She has a whole team behind her. More importantly, it's working! She is making tremendous strides in her speech (talking in full sentences now), fine motor skills (brushing teeth, chewing) gross motor (balance, walking up and down stairs), and being able to socially interact with her peers.

In writing this post, I hope you take away two things: (1) Go with your gut and surround yourself with a team that can help both you and your child. (2) Know that even when your biggest fear comes true, there is always a light to guide you on your journey (or hers) as everything happens for a reason.

Much love,

Raising Addy

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