Even before Jackson was born, he has had his own way of doing things. I was determined to have my ideal birth, no drugs, no doctors all in my business. Well, Jackson had other plans! He was born by unplanned c-section, didn't breathe properly right away and had to go to the Special care Nursery for 4 hours.
After that, he just seemed different than most babies, but I was ok with that. He hated the car, he hated the feeling of certain materials or toys. As he got a little older, I knew in my heart that something was "off" with him, but everyone told me he was just quirky. The little voice in my heart said it was something more, but I silenced it for a little while longer.
When we went to a family reunion when he was one month old, he cried the whole time. Relatives said, "He's hungry, feed him." (Um, see that empty bottle? I just fed him.) "He must be wet then." (Well, no, I just changed him.) We finally left, he cried the whole hour car ride home and when we got home, I laid him in his crib so I could have a Mommy breakdown, and he was silent - he just wanted peace and calm and quiet.
Every time (and I do mean every) we went anywhere, he cried the whole time we were in the car. I usually had my hang contorted from the front seat to his car seat to try to comfort him because it broke my heart that he was so sad in the car. We went to Florida on vacation when he was just over a year old and everyone said "Leave at night, he will sleep the whole way." Yeah, no. He fussed or cried over half the way and slept maybe two hours the whole 15 hour trip. That was fun. Grocery stores, playgrounds, sand... typical, normal stuff was enough to send him over the edge. I was beginning to think I was obviously just the worst mom on the planet.
Around 18 months old, I finally had enough and convinced everyone that I would feel better if I could have an evaluation. If they were right and I was wrong, the evaluation would show that and I would never, ever mention it again. I secretly knew in my heart that the answer would be he was not normal.
I called around and just randomly selected an occupational therapy clinic and they got us in fairly quickly. We were there for less than five minutes when the evaluator (Ms. Leigh) said, "I'm going to keep going so we have a starting point, but I can already tell you right now, your son has Sensory Processing Disorder." The tears just fell down my face. I knew this would be the diagnosis but it was easier to pretend it wasn't real before I heard the words. I still don't know why I was sad, I knew that was the answer, I went there seeking answers. I think ultimately, hearing your child isn't "perfect" is saddening.
We started Occupational Therapy with Ms. Leigh the next week and for the first few visits it was literally an hour of pure torture for me, her, and Jackson. He hated it - he would throw things, cry, scream, kick... it was so hard. As time went on, though, I started to see improvements in him. After working with the therapist, I began to learn the whys of everything and it made so much sense.
The car was stressful because the sound of the tires mixed with seeing the stuff move by quickly - it was too much to handle. The grocery store was a nightmare because he can literally hear the buzzing from the flourescent lights, mixed with the different smells and all the people and other sounds... The playground was so bad because he didn't know how everything worked - he had to have it all mapped out before he would attempt it so he knew what to expect.
Sometimes, it would seem like Jackson was being a brat or needed disciplined, when really he could not help it. It was a fine line as parents for us to decide when it was a behavior he could control and when he had no control over it. For example, he would crash into other kids because it felt so good to him - it was an extreme sensory input but that was the only way he got information to his brain. So many things were eased just by telling him what to expect. He had a routine, but knew it could change. Knowing what's next was huge for him.
In OT, we worked on coping mechanisms - jumping on a trampoline, swinging on a swing, spinning in circles - all of those things helped to regulate his brain. He really can spin for hours and never get dizzy - it's kind of weird and cool to see. He liked to be "squished" with pillows - he lays down and I put a pillow on his legs and lightly press. Wall pushes - like a push up, but against the wall. Some everyday things such as moon sand, Play Doh, dry beans, shaving cream - it is all used in OT for sensory regulation.
The therapist was amazed that we had even recognized something was amiss so early - she said most kids don't get diagnosed until they start school and are acting out or not able to function in a classroom setting. I thought she was crazy - how could I NOT notice?! It made me feel good at that point in my journey tat I actually wasn't the sucky mom I felt like sometimes. (Well, I still struggle with that sometimes. I do lose my temper, I do yell a little more than I wish I did, I'm a work in progress too.)
We had HUGE battles with food but that will have to be a post for another day. Someone I know is struggling with her son, so I wanted to write this out so she could read Jackson's story and see how far he has come and know that even if there's a challenge, her baby will be ok, too.
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