Posted by Rebecca Bingham, Special Needs Mommie | Posted in The Special Needs Mommy | Posted on 26-03-2012
Tags: tender mercies, thankful, Therapy
I am not sure what I was thinking when I decided to schedule every single possible appointment on the face of the earth for March. I was probably pregnant and not noticing how full the schedule was getting. As I hit the end of the month I want to beg for mercy and just crawl in bed and take a nap.
One of the side aspects of having a child/children with special needs is the “team”. As a parent, we think of ourselves as “team leaders”. It is my job to make sure that the OT is aware of what the PT is doing. I have to make sure that the IEP team is aware of what outside services are going on. Genetics needs to know about the findings at ENT. You get the idea. Having a team is awesome because it means that I am not alone in trying to figure out what my child needs and what is the next priority to be working on. The downside is that we have to check in with the team periodically and for me this year it was March. We did eye exams, ENT visits, dentist visits, got tubes put in ears, had three IEP meetings, had a yearly meeting with County Mental Health, had our goal setting meeting with the behavior therapy folks, sleep clinic visit for a sleep study, neuro stuff and the middle school play to top it all off. I should have given up my sanity for Lent, since it seems that I did that anyway.
Beyond the scheduling issues, I have felt very impressed this month to be thankful for the many folks who help us keep this family unit rolling along. I find myself fixating lately on some of the issues with my kids that normally would have rolled off my back. I’m sure it is the lack of sleep and the fact that we just moved, but this mom is being a little too emotional. For me, emotional means I become pessimistic. Yesterday at church, I had a quiet moment to reflect on the tremendous progress that the kids have made. While it is true that I feel like I will have to put a fork in my eye if I hear the words “snack, mom, snack” come from Ace one more time–I am also aware that it means she is able to connect language with action and is able to ask me for things (not that anyone else could identify what she is saying….). And while I feel like I might go insane after the second hour of listening to Cubby drumming on the window with his brand new drum sticks (my husband thought those would be the PERFECT Disneyland souvenir), he is using his imagination and doing abstract play and able to entertain himself. That is huge progress for this kid. Tiny is getting less tiny. She has a voracious appetite. She also NEVER STOPS TALKING. For a child that we had to force feed till the age of three and that we though might never really interact with people, it is nothing short of miraculous. Even the midnight feedings are a blessing in disguise since they give me a chance to have some quiet one on one time with Minnie. I am still trying to find the upside of laundry and dishes.
One huge development that we managed this week is that we are cutting back behavior therapy services for Cubby, along with mental health services in school. What that means in layman’s terms is that he is able to manage his behavior at school in church a way that he doesn’t need extra coaching. His teachers and aide can manage it. In the past, he had difficulty knowing how to react on the playground when kids didn’t want to play with him, or when he was faced with a situation that was unfamiliar to him. His reaction was to get aggressive (punching was usually involved, followed by shame. A terrible cycle). He also met weekly with a psychologist to help him work out how to manage relationships at school and how to face his fears ABOUT school. He is able to do all this on his own now and we hope that he can continue to keep these skills in the front of his mind as he navigates big changes coming up at school. I am so proud of my Cubby boy. I am so glad that he has a team that is committed to helping him be successful at school.
The last week of March will find me finishing the last of my appointments (Neuro, Orthodontics, one more dentist to go). I will commit to making a few dinners that don’t involve pasta, trying to look at the bright side of progress and taking more naps. That sounds about right.