Ain't No Mountain High Enough

Wednesday, January 14, 2015

My son has hypotonia (low muscle tone), dyspraxia (difficulty with motor planning), and lack of coordination. Damn, that is hard to type.

Starting at age two, the mom gut was telling me that something was not right. It had nothing to do with how sweet he could be or how much I loved him, but something just felt a little off. We were getting notes home that said "Wip was laying on his friends" or "Wip had trouble keeping his hands to himself". At home he seemed fine, but he was our first, what did we know?

Right before he was turning four we had him evaluated. We had no idea what we were really evaluating him for, but something was telling us that we needed to get our little boy help. After hearing, psychiatric, visual, and speech and language testing we were told that our son had a developmental coordination disorder (dyspraxia) and would benefit from speech and language as well as occupational therapy. Done. We started immediately. We had his teacher and staff at his school on board and we were going to work through this hiccup.

We definitely saw improvement. We saw focus that was not there before. We noticed a child that did not seem as "loungey" for lack of a better word. He always seemed to have friends, so that was not a concern. I witnessed some bully behavior from a little boy in his classroom a birthday party one day and informed his teacher, but it really never went beyond that point. He was four and he was happy. That was really all that mattered. Then we moved to Florida.

His behavior at his new school was weird. Constant phone calls. Behavior charts. Telling me that he did not like school. Let me tell you...the first few weeks, I wanted to just take him in a rabbit hole and the two of us would just hang out in our lair and not worry about the big bad world around us. I was heartbroken. I just wanted him to have friends. Be happy. I wanted him to want to go to school. It was almost like a magnetic force from the school was preventing his happiness.

A few weeks after we arrived in our new town, I went to a networking workshop at Rollins College. Little did I know it would change my life. The speaker was talking about public speaking and tips and tricks on how to "fake it till you make it". She mentioned that her son had a sensory processing disorder as a child and she learned that when you press your joints together it gives off a relaxing signal to your brain. During a break I went up to her to explain that I had just moved to town and my son was also struggling with the same symptoms. She gave me a therapists to meet with and a recommendation for an occupational therapist. I truly believe it was a sign.

We met with Dr. Thetford and she said to "run not walk" to a occupational therapist. She then went on to explain that she was putting on her "mom" hat and her son went to Lifeskills and that you don't get better than Sandy Wainman. Say no more...the appointment was made.

Sandy from Lifeskills spent two hours with Wip (we had only paid for a one hour evaluation). Patrick and I went for the consultation and she explained that Wip was a bright little boy, but his muscles need work. It is like his brain is the flower and the stem needs some strengthening. She said that when she talked to his teacher that she mentioned when he acts out or uses his hands inappropriately that immediately after doing it he knows it was wrong and the look on his face is almost like he could not help it. Sandy explained that he really in fact could not help it (not saying that hitting a friend is ok), but his muscles do not yet have the communication skills with his brain to let everything talk to each other on an appropriate level. Patrick had to hand me his handkerchief. I was a bit of a mess. But I was so hopeful. She mentioned that the worst part about having sensory processing issues is that you look like a normal functioning child so people expect you to be that. He will be a functioning, normal child and just needs a little help strengthening that core and the stem that talks to the brain.

During dinner one night I asked Wip "what was the best part of your day?" He did not take long to respond and said "not being taken to the office". I looked at him and said "you know sometimes when you are taken to the office your body has accidentally done something that your mind could not control". I was not saying it was not his fault, but I just wanted to make sure that he knew he was not a "bad boy". He looked at me and said "mommy, when am I going to go back to that meeting place with the dinosaur book and the climbing room". He was talking about the occupational therapist's office. It was like he knew. He is so damn smart. He knew.

After a lot of tears and conversation we moved him to a K4 class. He had made friends in his K5 class and the mama bear in me did not want him to have one more transition. During a conference with his K4 teacher I told her that I found it a little odd that we went from a phone call for behavior almost every day to not one call since the move. She said "I would call you if there was an issue, but the only time I have had to say anything to Wip was asking him to not pull the buttons on his shirt". Moving him to K4 was like taking a huge weight off of his shoulders. He was no longer stressing out and his behavior improved because of it.

He understands that with the help of Sandy, Tara, mommy, daddy, his family, his teachers, etc. that we are all here to make him the most healthy, happy, and contributing member of society that there ever was. I am so proud of my son. So proud.

I know that we have this mountain to climb, but we are going to climb it with love and support and I can't wait to get to the top.


Melody Kazee said...

His symptoms are so mild( in my grandmother opinion) that I think you have gotten way ahead of the game as early intervention is the name of the game
Wip is the kindest ,sweetest , most wonderful 5 year old and that is said with only a smidge of prejudice