Special Needs, from the Other Side

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.

I mentioned in a previous post that 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 had 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 found to be developmentally delayed in the area of speech and language. 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 lining up 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 alone. 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 me and God 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 impact 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, I'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.