I don't know how to start with this post. I guess a warning would be good - this is probably going to be long. I want to cover the last few months of what's been going on without skipping over details and all that our X-Man has been through. So, grab a cup of coffee, and let's talk.
Last fall, X-Man started playing basketball. We knew he wasn't going to be the star-athlete on the team. He doesn't have much muscle mass (he weighs only 37 lbs at 6 years of age), and isn't quick on his feet (maybe from clubfoot). What I wasn't expecting was to leave practice one night sobbing.
At his practice, I noticed something wasn't quite right. When the other kids were listening to the coach, he was rocking back and forth staring at the ceiling. When the other kids were dribbling the ball, he was jumping up and down and putting his hands all over the other kids and making unusual sounds. When it was his turn to dribble across the court, he couldn't without trying to shoot a basket every time he walked past the basket. He was the disruptive child on the team - the one the coach had to constantly redirect and correct.
My hubby was the assistant coach, and he started to notice too. Basketball was pointless. It was basically a time for X-Man to act excessively silly and disrupt the team. There were a couple of games that the hubby couldn't make due to work, and I would have to walk across the court and try to calm/redirect/correct X-Man's behavior. He played the whole season as I didn't want him to quit mid-season and he still loved going. He was very discouraged that he hadn't made a basket, but he still had fun.
So, I called his pediatrician (whom we adore) and she asked that we come in to the office to observe him and help us come up with an action plan.
We spent time discussing things that concerned us, as well as some questions that she had for us. She recommended that X-Man have evaluations for autism spectrum disorders, physical therapy, and occupational therapy. We filled out multiple evaluation forms, met with specialists and came up with an action plan. We would do PT once per month, OT once per week, and thankfully, it was determined that he does not have any form of autism. It was, however, recommended that we have him screened for ADHD.
I've been having mixed feelings about getting a diagnosis for ADHD. I feel that there is such a stigma attached; besides, I homeschool, so an IEP really isn't something that he needs at this point. I talked to our pediatrician about these concerns and she explained that there are support groups and parent-led groups that could possibly help us learn how to cope and help him. I told her about my concerns with stimulants and that I wouldn't be interested in putting him on medicines. I'm biased, but X-Man is SO smart, and I'm concerned that medication would alter the way he thinks, and that's the last thing I want for my brilliant child. I asked if there's some dietary changes we could implement to help his symptoms. She explained that there is no scientific proof that dietary changes help, but on a case-by-case basis, there's anecdotal evidence that it can help. We decided to cut out gluten, red food dye, and cut back on other dyes, artificial flavors, and sugar. It has seemed to help. He was having daily meltdowns, now he has them every three days or so.
He did have the biggest meltdown of his life two weeks ago, which resulted in many stares, whispers, and judgmental glares by patrons of the zoo. It also resulted in the biggest meltdown of my life, but that's another blog post on another day.
X-Man attended physical therapy in January, February, and March. His therapist was very surprised. She said that considering how inflexible his feet are, that he is able to do more than almost any other child that she's seen! In those three months, he greatly improved as we would spend time implementing stretches and exercises at home. And, at our last visit, he 'graduated' from PT - she recommended that we put flexion-stops back on his magic shoes, and that we continue his exercises and stretches. She said we could also contact her whenever we had concerns or questions.
X-Man has been going to occupational therapy each week. Unfortunately, it took a while to get us in as the locations we preferred had no openings. We go to the main children's hospital, which isn't as bad as I thought - I tend to stay in my quadrant of the city, so I think it's a good thing that I'm being pushed to go somewhere new. And I absolutely adore his occupational therapist. She is so patient and kind and easy to talk to, which is great. About two weeks ago, she asked if we had ever had him assessed for sensory processing disorders. I told her that we're going to get him assessed for ADHD, but that there had been no conversation about SPD. So, she described it to us and explained that sometimes SPD is misdiagnosed as ADHD. We filled out a questionnaire and Audrey (the fabulous OT) scored it for us.
He had two 'senses' that fell within the normal range (I think they were vision and body awareness), the rest fell in a light gray area, which means 'some problems'. Thankfully, even though some were close, none fell in the dark gray 'definite dysfunction' area. She also gave us a lot of information on SPD as well as activities to help him throughout the day, called a sensory diet. So far, it seems to be helping. He had one of his best, focused days of school to date. We started the day by having him carry the jug of milk to the table, push a basket of laundry across the floor to the laundry room, load the washer, and then had him chew on chewy jellybeans while he did his math work. He didn't complain about his math work, and didn't forget to do any of his problems (nearly every day he forgets to do a few problems). His handwriting actually looked better too!
There are many times where I think he is just not listening (constantly tossing a ball up in the air, acting very silly, getting very wired when he 'rough houses', making sounds over and over again, etc.), that may actually be him 'stimming', which is something he cannot control. When we do certain activities on the list, it really seems to help - which is quite amazing.
I feel very happy that he isn't in the definite dysfunction category, and even happier that we now have ways to help him. I'm still not sure about getting the ADHD diagnosis (or ruling it out), and I'm trying to figure out just what SPD means - I'm currently reading The Out of Sync Child which was recommended by some SPD parents and am spending probably too much time researching - but in the meantime, it feels good to have some answers. We're going to keep working with him, and doing all that we can to help him. If you or someone you know loves an SPD child, won't you please share any tips you have? We could also use prayers for discernment (please no prayers for patience ;) ). I also want to thank all my friends and family members who have already been praying for us and checking in for updates - your support means the world to us.
