Young Mother, Young Advocate

As a young stay at home mom to a preschool boy and a toddler boy, I was busy and I was trying to the best mom to both my boys that I could be. Part of trying to be a good mom was reading all the mom-books and knowing what my boys should be doing at each stage of their development. This was something I took seriously, I had left a job in the corporate world, a successful job, to be at home raising our boys and I was going to do it to the best of my ability.

By the age of 3 our oldest needed to get out of the house a bit and have some time away from me and baby brother. He had adjusted very well to the new addition to our family, but was still pretty clingy to mom and we knew that he was a bright boy and figured a little bit of learning in a structured environment would be fine. He clung at first, but did separate. I asked questions making sure that the errors they were finding with his number identification and pronunciation of some letters were typical of his age and was assured that he was on track with everything. He continued at this preschool two days a week and the next year switched to three days - each time was just a few hours in the morning. And at the age of five our big guy was ready for all day kindergarten (me, not so ready for him to be gone all day!!).

At that point our youngest was now 3 and we were wanting to keep things even for them and put him in preschool at the same place, giving him social interaction and a little structured learning a couple hours a couple days a week. He had the same teacher as his brother and was more than a little clingy, but after a few months I got a couple kid-free hours two days a week! I had noticed some differences in our children and their rates of learning, but like all the mom-books had said, I was careful not to compare our two wonderful boys. Imagine my surprise when the teacher, who we adored, approached me about the number of pronunciation errors he was making consistently and that he should be evaluated for speech therapy. He was nearly 3 1/2 and would soon age out of the programs available to him prior to starting public school!

I called the school district where he would attend 4k (they had just started a program that year - our oldest missed out) and had him evaluated. He not only was found to need speech therapy, but once he started in 4k it was brought to our attention that he was having other problems in a school setting. In talking with his pediatrician he decided to have an occupational therapy evaluation done. This showed that he clearly had sensory process disorder. SPD, as it is commonly referred to is not a formally recognized stand alone disorder, but is part of the other nuero or cognitive disorders and often seen on the autism spectrum. We did not jump to any other diagnoses at this time, we just followed through with OT (and speech) so that he would feel as comfortable as we could get him in his own body and in his environment.

Through the years he went to OT off and on as symptoms interfered with life. He (and we, as a family) worked hard to overcome sensory issues and many times he had to just "tough it out" in situations that were uncomfortable for him. As I started to look into this more I realized that there were other parents with kids who had SPD and that so much of what we were we were doing on our own through trial and error (after guidance from OTs). I came up with the idea of a sensory processing disorder support group. It met in person at our local children's hospital for six years. I tell you the parents in that group became so close and came to depend on each other for ideas and support. We had guest speakers from OT facilities and a well known author on the subject who lived nearby come in to speak.

After my son's rare diagnosis in 2015 the group kind of fizzled, but I still connect with some of them and admire them all. I am also grateful for this group of parents at it was my first try at bringing parents together who needed it and having success doing it. It propelled me to believe that I could and gave me the confidence to know that even if one night, or one event does not turn out - that if there is truly a need that my perseverance in making it work will pay off in the end for those I am wanting to help the most.