The central struggle of parenthood is to let our hopes for our
children outweigh our fears. – Ellen Goodman
I consider my son to be an individual with special needs. Although he’s never had any formal diagnosis, he has experienced many challenges in his four years of life. In addition, he has participated in various therapies and interventions in an effort to “treat” these challenges.
It was early in O’s life that I noticed differences. Although each one alone was nothing to be concerned about, when I put them all together, it created a very different picture. A picture that caused me to seek help from my pediatrician. Ultimately, I knew what I wanted. I wanted what I have given to many parents and students throughout the years. I wanted him to be evaluated by various professionals in order to understand his areas of weakness, so that we could intervene.
We began with speech therapy, as O was unable to make any sounds without significant struggle. He was developmentally delayed in the area of speech and language, as he had limited sound production, and although he could follow any direction and understood many words, he could not produce any. He began speech therapy in December 2009 and soon after began receiving educational intervention, first in our home, and then within a parent-child group.
As a psychologist who works with parents of children with special needs, I had been trained in the “stages of grief” that parents go through when they discover their child has special needs. Personally, I don’t recall experiencing any of these typical emotions. Maybe because I had known for a long time that something wasn’t right, and I didn’t feel any grief, just validation. It also could have been because I was so focused on getting the evaluations, rearranging my calendar and scheduling the therapies, that I really didn’t have time to feel any emotion.
Another thing that I didn’t do early on was pray about O or his challenges or how to handle them. Yes, we had people praying for us, but I rarely prayed about the situation myself. Maybe because I thought I knew what to do and could handle this special education thing myself. I was so caught up in the “to do list,” the things that needed to be done, that I didn’t take the time to pray. There was definitely a disconnect between God and me during this time, after all he already knew what was going to happen, so what were my prayers going to change? My only hope, I thought, was to do it on my own. I am so grateful now that others were praying, especially since I wasn’t. This was not something I could handle on my own!
As time went by, I noticed more and more differences between O and other boys his age. He was not very active and resisted certain activities. He would not go near the swings and held on with all his strength to the wall when using the small step that led from the house into the garage. The bath water was always too hot, he wouldn’t go near any stuffed animal, and it hurt for him to get dressed. He wouldn’t use paint or playdough and cried to be changed if he spilled even the smallest amount of liquid on himself. And so much more. It was near his second birthday when we enlisted the help of an occupational therapist. It was here that I heard familiar terms like “sensory seeking” and “sensory avoiding” and was introduced to terms like, “motor apraxia” and “gravitational insecurity.”
In my profession, I had had plenty of experience with speech pathologists, occupational therapists, special educators, etc. However, to experience all of those people from the other side of the table, as a parent, was quite different. I had heard the terminology. I knew the law. Now, I knew the emotion. It had finally become more than a “to do” list.
Although all of O’s therapies and official interventions have ended, he will always have special needs. Although he does participate in many of the activities that he used to avoid, some of them he simply tolerates, but doesn’t really like. And, although he now has excellent language skills, I continue monitor his language development, just to make sure he doesn’t fall behind. Each day we adjust our lives to him and his needs. It makes ours lives easier to make that adjustment, to avoid meltdowns and crises. I am forced to think ahead, about every situation and how it might effect him and then I plan and hope that I did enough to avoid the negative effect.
The next big step is the one that I have feared the most, even since the beginning…O entering the public education system. I work in public education and I know that being different is difficult. But, that is too much for me to think about now. I still have a year to process all the implications. So, we’ll have to save that for a future post.
I’ll leave you with this…a link to a poem entitled, Welcome to Holland, which describes one mother’s view of having a child with special needs. As someone who has worked in special education for nearly 15 years, I have read this poem many times. And, while this mother’s journey is not the same as mine, I feel like I understand her journey a little more now that I have “visited Holland” myself.
Comments
Carmen
I can really relate to this post. I am a master’s level therapist and had worked with challenged and at risk adolescents for years before having my first daughter, who was first diagnosed with SPD followed by Asperger’s. Because her vocabulary was advanced–her IQ is very high–so many professionals missed that she was on the autism spectrum. After explaining and educating everyone in her little life on her sensory struggles–preschool teachers, babysitters, family, friends–I began to feel like I was BEGGING our pediatrician to just refer her to OT so we could finally get the right treatment! I had done a ton of research, diagnosed her myself–correctly, I might add–and I was the one who constantly drove the train, and with a really loud whistle too! Sometimes I just wanted to shout, “SEE! I told you so!” So when we finally got OT, then more testing, and a concise diagnosis, I felt RELIEF. I had already gone through a grieving process of “gee this isn’t what I thought it was going to be like”. I think much of my “grief” was in not being heard or understood, because I knew this was holding back my child. Thanks for this post. Glad someone else felt this way too!
Susan S.
Best of luck with the public school system. I have found it to be a challenge. Since you stated that O’s therapies and official interventions have ended, do you have a regular sensory diet for him? A way for him to keep his brain regulate? The school system will not provide an OT based on sensory needs, but with an offical diagnosis of SPD, O can receive a 504 plan, where you can write in accommodations. For example, on my son’s 504 plan, he sits on an exercise ball instead of sitting on a chair (we began this in 2nd grade, when he had to sit still more of his day, and was mature enough to have the ball there without treating it like a toy).
Just food for thought. The adventure that is public school is just about to begin for you. Best of luck.
beans_mom_1
I loved the poem!
I have felt very much like you. Everyone was praying except for me… I think I was so busy figuring the next step or how to sideswipe a meltdown.
Certainly worry about this day and not too much ahead! At least for me, I get too overwhelmed just thinking about what lies ahead at school (bullying, missed social cues, strangers, eating aversions in the lunchroom)? But I decided that will be fussed over when the time does come (if they actually materialize)!
Thank you for the positivity in your post. Hope to hear more of ‘O’s progress in the near future!
Jenny from the Block
Love that poem. Read it in the past, but had forgotten about it. Thanks, I am going to hsar with some family. I am still learning about this, but I wish my family and friends would learn about it. They just do not understand (except my Mom) what my kids go through, or what we as parents go through. Good luck with the school system! My daughter does well in school, but she saves it all up and meltdowns at home pretty much every day, often multiple times a day. I am just glad she is making it at school and I’d rather her meltdown with me at home, hard as it can be sometimes, b/c I love her and understand.