I never thought the day would come when I would be writing to say that this disabled momma can now be categorized as a special needs mom. I have laid low this past year when it comes to talking about everything that we have been going through with our son, but I feel like I am finally confident enough to talk about it.
The Diagnosis(es) that made me a Special Needs Mom
This all started at my son’s 2 year wellness visit with his pediatrician. I was concerned with his speech because even though he could say “Momma”, “dada”, “Mimi”, and a couple other words I felt like I was lucky if I got him to say 1 word a day. Some weeks it even felt like he would go days without saying anything other than baby babble and it really mad me sad because all of the other 2 year old cousins of his were saying so many more words and phrases than I could ever imagine him saying. And during that visit I was told that I was wrong. His pediatrician said that nothing was wrong. My son was normal and he said that I shouldn’t worry because all kids talk by the time they are in 2nd grade. (Cue eyeroll)
Working with First Steps
I decided to ignore the pediatrician’s advice and scheduled an evaluation with First Steps for my son. I just knew something was wrong and it needed to be dealt with. They confirmed my suspicions and said that he qualified for Speech Therapy as well as Occupational Therapy. The problem that then arose was getting my pediatrician to sign on to these services. After weeks of trying to get him to sign on I decided to find a new pediatrician. Of course as I did this he finally signed the papers.
I started therapy with his consent and still changed over to the new pediatrician because I wasn’t happy with the results we were getting from him. No parent should have to fight as hard as I did just to get speech therapy. To give you a timeline we started this process in early March 2018 and didn’t get speech therapy until late April 2018.
My heart sank a little as we started speech therapy because we were in the middle of buying a house and the woman he was working with was about to leave on maternity leave. Those first weeks were hard. He just didn’t show any signs of improvement and he didn’t want to talk. But things changed after we moved; we were assigned a new therapist and that is when we started to see improvement. She was able to understand him and play off of him.
All the while we were trying to get Occupational Therapy started, but the move meant we were assigned a new case worker over at First Steps and it felt like I was pulling teeth to get her to do anything. It took me months to even get the paperwork sent over to my pediatrician and get therapy started. Ultimately I was given my old case worker and she got an OT sent over to us within the week.
This is when my son got diagnosed with Sensory Processing Disorder. This didn’t come as much of a shock as one would expect because when I did research I realized that this diagnosis is me to a T and I had been seeing signs that my son struggled the same way as me with many things.
Once OT began we saw many new things. Raiden was able to start calming himself and was learning how to self-soothe. This is something he could never do. It always broke my heart that he didn’t get attached to anything and couldn’t calm himself when he got upset and I never knew that the two things went hand in hand. After much work over the past months he is now also able to play with play-doh, touch water beads, and tolerate a small amount of sauce on his food without a complete meltdown.
Moving on to special education pre-school
As Raiden gets closer to turning 3 we have been working on the process of transitioning out of First Steps and into a Special Education pre-school. This meant more evaluations, and another diagnosis of an overarching developmental delay.
We finally are moving forward and even though we haven’t completed our Case Meeting or the IEP, I am pretty sure he is going to qualify for the program and will be getting continued Speech Therapy at school as well as Physical Therapy. The PT might come to a bit of a shock to you all as he didn’t get PT services with First Steps, but we recently found out that he is hyper flexible and hyper mobile and is getting his first pair of UCBLs. PT is mainly a transitional and confidence boosting therapy for him as he is not confident on his feet and he will be relearning to walk with his UCBLs as he transitions into preschool.
It’s been a crazy year for us.
I still feel like the whirlwind hasn’t slowed down and am in shock with how last year turned out. 2018 was not what I expected it to be. I hadn’t expected to buy our first house and I hadn’t thought I’d be taking me to a million doctors and appointments like I had to go through as a child. I never thought that my son would be the child to turn me into a special needs mom. My only hope is that he handles all of this better than I did as a child.
I guess looking at myself now I realize I am already becoming a pretty good special needs mom because I am my son’s advocate and I have yet to back down and let myself get pushed around by any doctors, programs, or teachers. I will put that part of this into the books for record.
Read more of our continued crazy story here.