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.

The Big Picture

Last week was full of discouragement. There was nothing direct, no specific words anyone used, no specific event that occurred. In fact, I received many encouraging words from my husband, family, co-workers and friends. My discouragement was internal, a battle that I often wage, but this week seemed worse.

Mostly I struggled with letting go, not being in control. Especially, in the case of this blog. Although I know people are reading, as I have had several comments and "likes," I want to know who's reading, who's sharing, if I am making an impact.  I want to know if what I'm saying resonates with you or anyone you know. I want to know if what I'm saying sounds crazy to you. I feel like I need more feedback. Honestly, I want to feel like I have some sort of control over what's happening here in this space. And, even though I know that I don't, the illusion of control is sometimes nice.

Control. I think it's one of those things that we all want, that we all desire. I know that it's true for me. But, how many things in my life do I really have control over? Not that many. If I'm truly honest, probably none! And, I need to figure out a way for that to be okay, because if it's not, I will continue feeling like I did last week...discouraged, anxious and unworthy.

Intellectually, I know that I need to let go. Especially since I have someone, some thing that I know is in control. That should make me feel better, right? Honestly, sometimes it does and sometimes it doesn't. In particular, with this blog. It's one of the things that I need to just let go. Especially since I believe that these are really not my words. These are words that come to me while I'm walking or running, driving or when I'm trying to sleep. I write them down so that I can process through them, and in the hope that someone else might read them and be impacted by them. But, I have no control over how many people read or how many people are impacted.

Control. It's one of those things I think everyone wants a little more of. It's one of the top reasons why adolescents and young adults develop eating disorders, because something in their life has made them feel out of control and eating is the only thing they have control over. They can control what they eat. They can control how much. And, they can control what they do after they eat.

I think control is also one of the reasons that my son is restrictive with his eating. While there are many textures of foods that he avoids and is unsure about trying, it's also become about control. Because there are times that he may feel out of control, knowing that he can choose what he eats, when he eats, and knowing that he doesn't have to eat certain things, gives him control.

I think we're all searching for a way to be in control. Ultimately, though, we must realize that we are part of a big picture, a big plan, that started a long time ago, long before we were even born. That started with the beginning of time. And, God knew. He knows the whole plan, he sees the whole picture, even when we can only see the pieces. In Jeremiah it says,

"For I know the plans I have for you,” says the LORD. 

“They are plans for good and not for disaster, to give you a future and a hope." 

(Jeremiah 29:11 NLT)

And that is what I need to focus on above anything else, that I am part of a bigger picture. Part of a bigger plan. I do play role in it. And, I need to know that anything I do is a part of that plan. I may not find out how I fit in the plan today or tomorrow. I may even leave this world and never know what role I played. But, I know that I want to contribute to it. That's one of reasons I'm writing. That's one of the reasons that I'm trying to be a different person. To be someone who is a part of the plan, not someone who lets the plan pass me by.

I shared this verse on Facebook other day...

We can make our plans, but the LORD determines our steps. (Proverbs 16:9 NLT)

To me, this verse is about having a plan, without the knowledge of how I'm going to complete it. I need to rehearse this one everyday. Not knowing about the steps I'm going to take, but knowing that there is a route and a plan. And, trying to follow it the best I can, which means praying and seeking answers and guidance. I feel that many of the things that have come to me lately have been as a result of being more connected to God. So, I need to keep striving for that. I need to remember that it's not about me, it's not even about you, but about being a part of the big picture.

On the Right Track

"Well, well, anyway, blue is the only color for a really useful engine. 

Everyone knows that!" - Thomas the Tank Engine

O loves trains! Actually, O is obsessed with trains. It wasn't until he began attending preschool that he started to explore the fact that toys other than trains exist and might actually be enjoyable to play with. Even so, more often than not, the trains win.


He is particularly fond of Thomas the Tank Engine, as so many boys his age are. However, he also has a detailed knowledge of how steam engines work. He knows things about pistons, fire boxes and drive rods. He also has an unlimited knowledge of freight cars and coaches, mail cars and diesels. While I am proud of all the train knowledge O has acquired, I do recognize that this is not typical of many 4 year olds.

Trains are also O's comfort item. He uses them to de-stress, much like I use a hot bubble bath, a good book or now, this blog. He could, and has, spent hours organizing and creating stories with his trains. He likes to be alone with them, to get lost in his imagination, where he is in control. This comfort and control, along with his knowledge and obsession, does not make sharing or socializing with his trains very easy.

Several weeks ago, we had another family over for dinner. They have two boys around O's age. This took a tremendous amount of courage on my part, not knowing how O would handle having other boys his age at the house, playing with his toys. When prepping him for the evening, we discussed that the boys would be coming and that he would have to share his toys. I wish I could accurately describe the look on O's face...it was pure anxiety. Not because he doesn't enjoy the boys or that he hadn't played with them before, but because he would have to share his toys, more specifically his trains. I know that all 4 year olds struggle with sharing, but I would argue, for a different reason.

My son is truly afraid that someone will use his trains incorrectly. Even adults are typically not allowed to touch the trains, but rather watch as O explains the story the trains are telling that day.

So, back to the prepping...we talked about what toys we would share and what special toys we would put away. I must admit, I struggle with this. How will he learn to share if we don't require it? But, in our journey, we take baby steps. Sharing the dinosaurs and toy cars was hard enough, but the trains would have been too much...at least for now.

The evening went well, sharing and all. It wasn't until the end of the evening when the boys were helping clean up that O had a minor meltdown - after all, they weren't putting the toys away correctly! Again, the word obsessive comes to mind. Like I said before, it's a journey. But, I think we're on the right track!

Happy Birthday O! I love you!!