It’s been over one year since we’ve been diagnosed and we’ve actually made progress!!! Bean was loosely diagnosed April of 2011. We didn’t actually get into therapy until June and really dug into it by August. From then on it was a constant stream of occupational therapy, listening therapy, joint compressions, blogs, brushing, testing, Internet searches, sensory diets, trial and error, sleep clinics, mental therapy, explanations, questions, and reading. Oh my the reading. I think I read every book, blog, website out there to try to get a grasp on what my baby was dealing with. And there was also a lot of denial. A LOT of denial.
We had struggles. At play dates I’d hover waiting for her to form tackle another kid or bite her brother. School was a disaster. The teachers did not understand her. She tried so hard to keep it together that she would melt when she got home. I would be a mess half the time anyone I knew saw me. She was not sleeping – so I wasn’t sleeping. Seriously, I wrote another post about it, NOT sleeping. I was trying to pay attention to my other two children. Sensory diets and therapy was overwhelming for me. Everything was overwhelming. I felt like I was clawing my way out of a sand pit. I thought I was never going to get out of it.
Fast forward to this past August. Yes, just a little over a month ago. My Bean. Wow, my Bean has made such strides. I have a whole new love for her. It’s amazing to me how her transformation has made such an impact on my feelings towards her. I guess it’s because I am not so on edge and can appreciate who she is. She is a funny, caring, loving little four year old. I have been getting so many comments from friends that she is a different little kid. People watch in amazement when she sits quietly and plays. It’s noticed when she walks up calmly to a friend and asks if she can hug them. She does so with gentle arms and doesn’t squeeze too hard. Other kids want to play with her, they want to be by her! Of course she still has her spunk and energy but she’s learning how to keep it in check.
What happened to prompt this metamorphosis? I think a big change was that in early summer I took out red dye 40 and yellow dye 5. Taking them out has calmed her overall. She is less agitated and “crazy”. I don’t know if it is coincidence but since then she has been sleeping through the night on average 6 nights a week opposed to 1. Yes, I said 1. She was sleeping through the night (bed time until 5/6am) once a week…since she was born. Overall, for me it was an experiment but after seeing this change we are sticking with it.
I also realized that I don’t have to do a scheduled program with her. I do need her to do heavy work every day but not necessarily at the same time or the same way. In the summer we did a lot of swimming, playing in the sandbox and pushing brother on the swing. Now it’s more chores in the house, and gymnastics classes. We still do brushing at night with her special lotions (lavender or peace and calming oils). I look at that time with her in a new light. It’s a way for me to slow down with her, talk about the day, relax and enjoy my little one. It’s not “let’s get this done because we have to” anymore.
We started putting labels on how she is feeling. I took a little away from the Engine framework. She labeled how she was feeling with letters. We always want to be at “C” which is calm. We talk about what she needs to do to get there. We talk about how everyone in the family is, and if they should do something to get to “C”. I still have the psychologist and occupational therapist on speed dial for our set backs. Besides little questions here and there, I haven’t had to use them much. OT got cut out for us in May when our insurance changed but before we finished she gave us great tools to get us through the following months.
What made a big difference this fall was switching schools. We moved her to an inclusive school where her therapists were located. Her teacher is open and communicates often with me about how she is doing. She even asked the other day what to do when she was at a high and she DID IT! I told her our letter system and what she likes to do for heavy work. We are more comfortable there. They focus less on academics and more on moving, experiencing, and playing. She is only four and shouldn’t have to sit like she is in first grade. She actually loves school and enjoys going. No more crying there!
I learned to look at her as a kid dealing with this rather than an SPD kid. This has helped me watch what I say to others since she and I were being judged so harshly by other parents, kids, and family. I rely on this website for help and support even if it’s just reading another person’s post and relating. It has saved me realizing I’m not alone, that she is not alone.
It’s funny that such little things have made such a difference. I am a happier person. She is a different kid, our whole family is better. Life is easier! Last year at this time I never would have thought I’d say that. I am still hoping and praying and wishing for us to be able to cope with this better. Obviously we still have our struggles. Now that it’s fall in the Midwest we have to wear shoes and socks…together. It’s a fight every day. She will wear some shoes without socks, socks without shoes but not the two together. I’m still figuring that one out. But with this I look at the positive side. In a year we made such progress. I’m sure in a year from now we will be able to throw on shoes and socks without crying. (side-note – if anyone can help me out with the shoe/sock thing THANK YOU!)