Sunday, April 22, 2012

testing, testing...

Is this thing on?

We've begun testing with a top neuropsych for Jack, and appointment number two is tomorrow. I am anxious to see what the testing and observation uncovers, but I am very thankful that we have started down the path to better understanding both boys.

Sumner, on the other hand, will begin testing with a psychologist shortly.

Both boys continue to have accidents. It is SO frustrating. I pray and pray we can get to the bottom of what exactly is going on and can get them to stop. My private fear is that they will struggle in kindergarten socially if other kids figure out they are having accidents. I keep trying to explain this to them, but I feel like it is only making us all more frustrated. Sometimes they get teary and say "I promise I'm not doing it on purpose." It breaks my heart because I feel like we've taken a thousand steps back. I've decided if we don't see improvement soon, like in the next month, I'm going to call the pediatrician about it. I've been following the guidelines in the book I posted about, and I believe we have things "moving" but I'm not sure how much damage they've already done internally.

Kindergarten registration is only a few short weeks away. I cannot believe it. I am so excited for them to start kindergarten. My only fears are them overcoming some of the things we have been dealing with.

We started with a new OT (our previous, fabulous one found a new, really great for her, job) and she is also really fabulous. At first I worried she wasn't pushing them enough but Summy's melted down after the last two sessions which tells me that it is hard. My heart broke on Friday because while waiting for Jack's turn with the OT, Summy laid on the floor and spun the wheel of a balance bike over and over and over. (Stimming.) He was also repeating a phrase from a song over and over. It's moments like these my anxiety starts to rise and I have to try and calm myself. Mommy fears. I repeat this mantra to myself:

"My children are amazing, special, and I am blessed we are all here and I have their lives and my own life. They are never going to look the way others expect them to, but instead I need to take a deep breath and learn from them."

I know it is a double edged sword the idea that they will attend the school I work at. It will be impossible for others not to judge them, and in turn judge me. I know we have done enormous amounts of work with them and they have made amazing strides. I have to stay firm in my knowledge that those people who will nay-say them, put them down, or judge them negatively cannot affect me. I have to let it roll off of me like rain and focus on raising my beautiful boys. Sometimes that is easier said than done, but it has to happen. I continue to be as open as I can about them, hoping that our journey can help others.


Elyse said...

Thinking about you guys this week. Whomever they are; whoever they become, a mama will always love them! Hugs!

Sarah Dee said...

I forgot they would go to your school. That is going to be interesting.

DS was headed to the bowel managemnt clinic at Children's. He still has so much fear over pooping.

None of our children look the way others think they should. You do have amazing, loving boys. Totally what matters.

tbonegrl said...

Thanks girls. Sarah, I'd love to pick your brain about your experiences. That's where we are headed next