Having a special needs child alters your life in many ways. The biggest alteration to our lifestyle has been therapy, more therapy, and some more therapy. Jackson needs and gets a lot of help. On Monday’s we go to the Guild School where Jackson hangs out and plays with toys with his special education teacher, Shirley. Then he sees his physical therapist Alecia. Tuesday we head back to the Guild School where he sees Jan, his speech therapist. Afterwards he has occupational therapy with Joy. Thursday’s we go to St. Lukes where he gets in the pool with Dave for some aquatic therapy. Every other Monday Lisa comes to our house to give him some massage therapy. Throw in a doctor appointment here and there and Jackson has quite a busy schedule. When I changed calendars in January, I looked back through the previous year calendar and was shocked when I started going through it. From January to June there were hardly any entries on my calendar. Then in July (when we got his diagnosis) we had something written down for almost every day for the rest of the year. When people ask me what I do for a living I sometimes say “I am the personal assistant to Jackson Klim and am Executive Director of the Klim House”. People seemed impressed at first, until I tell them Jackson is my son and the Klim house is where I live, then I just get a few laughs. But seriously, it’s no laughing matter, the kid keeps me busier than any job I have ever had!
Without therapy I honestly don’t think Jackson would be where he is today. While his progress has been great, therapy hasn’t always been. When he first started at the Guild School all he would do during every therapy was cry as loud as possible. He wouldn’t play with toys, he would fight the physical stuff, and he would cry, cry, cry. It was exhausting, for me and him. I desperately wanted him to work hard so he could make some progress. He desperately didn’t want to do any work. Instead of working, he focused his attention on objecting to it, in a very loud manner. At times I just wanted to grab him and run all the way home, saving my baby. Other times I was just as frustrated as he was because I wanted him to work. I don’t know how long it was before he would only cry most of the time instead of all the time. It seems like it was 3-4 years. Since he is only 2 years old I think that is a wrong estimate. Eventually his crying became less and less and he would do some of the work. Then one day I took him to therapy and was told I was being kicked out. The therapists all felt Jackson was crying in a bid to try and get me to save him from the devil therapists. I was no longer allowed in the room while Jackson was getting therapy. I was crushed. I wanted to see him make progress, I wanted him to know I was there supporting him, I just wanted to be there. Very reluctantly I agreed and made my way down to the parent room at the Guild School (the parent room is a room with a couch, chairs, books, tv, and kitchen area). It only took me about 30 minutes to realize how much I liked this new routine. Why? I was in the parent room, alone, no child, no crying, time to myself, I could do anything I wanted, how glorious it was! The best part – Jackson had a fabulous day with his therapists and didn’t cry. Just like that we had a new routine. Jackson has been doing so much better at therapy without me in the room and I have gotten some desperately needed down time (something EVERY mom needs). I still miss being in there with him, but I go see each therapist after each session and they tell me what they did and how he responded. I can also watch him behind the one way glass window.
The one therapy Jackson has never objected to is aquatic therapy. He loves the water and will do just about anything Dave tries to get him to do. Aquatic therapy is definitely his favorite therapy. Having said that, Jackson seems to love all his therapists and reacts differently to each one. Shirley is quirky and funny and he kind of acts the same way when he is with her. Shirley is the one who discovered that Jackson is a “faker”. He likes to fake that he doesn’t feel good or is too tired to do any work. Now that Shirley figured him out, his faking gig is up. Alecia is very gentle and sweet and he takes advantage of that. She is his physical therapist (his least favorite therapy) and he gives her a run for her money. Jan sings to him with her beautiful voice and he quiets down, plus she has a lot of fun toys. Last week Jan was trying to get him to play with a new toy, he wouldn’t. He showed absolutely no interest in it. So Jan turned around to get another toy and when she did Jackson started playing with the new toy. Sly. He plays hard to get with her sometimes, I haven’t figured that one out yet. Then there is Joy. Jackson lights up with Joy. She rough houses with him and he LOVES it. She makes him work hard too but makes it fun so he will do it. The most beautiful thing to me about Jackson’s therapists is how they always focus on the progress and strengths he has. As a parent of a special needs kiddo I think we sometimes focus on what our kids can’t do. That’s because when we go to doctors they always tell us what our kids won’t be able to do. I think it’s their way of preparing us. Having professionals tell us the positive, wonderful things our son can do makes me feel less alone and scared.
People always ask me if I do therapy stuff at home with him. The honest answer is I have good intentions. I do try now and again. The therapists give us a lot of ideas and tools to work with at home. The thing is I want Jackson to just be a little boy sometimes. He has a lot of challenges ahead of him, he has a lot of challenges now. When we are home I just want him to play on the floor, or swing in his swing, or throw his toys from the highchair. That’s not to say that I don’t want him to make progress and reach his version of the developmental milestones. More than anything I just want him to be happy, play his way, and hang out with his family. I don’t want our home life to be constant therapy. Jackson needs to learn how to explore the world on his own too. We can’t show him how to do everything, he needs to figure some things out for himself. So I slack off a little at home. I guess I won’t be getting the mother of the year award. But I don’t need no stinking reward, I have Jackson.