Friday, July 18, 2008

K.C. is uneasy. Adam starts ABA. Big Brother is at Summer Kamp.

Hello Everybody, I thought I would post an update on the boys.

Big Brother has been at Summer Kamp. Yesterday the camp had a family night so we went to watch him and his fellow campers sing and dance. Afterwards I watched him play games, say goodbye to the camper teachers and he ate candy, lots of candy. I found a new snack while I was there. They are called Flamin Hot Cheetos with lime. I normally don't eat much junk food but these were actually good. Big Brother had a great time at camp and was eager to get home. When we got home he was so happy to see K.C. and Adam. He kept saying, "I missed you guys!" He hugged K.C. quickly cause that is about all K.C. can tolerate when it comes to hugs and gave Adam a great big hug. Adam can tolerate hugs a little bit better than K.C. He had a really great time at camp.

Adam has started ABA in full swing. When my mother was alive she wasn't a big fan of ABA at all, he went to therapies and did try ABA for awhile but for some reason my mother never liked Adam in ABA. I have started an ABA program for Adam and he's doing well. When Adam first started in reminded me so much of K.C.'s first ABA sessions. Lots of screaming, getting up and stimming. We are working on sitting during a sessions with Adam. Before ABA he wouldn't sit with a stranger (his new ABA teacher) for more than a minute. We are slowly working on it and his adjusting very nicely. Even though Adam is a teenager I feel that ABA will help him so much. It's never too late for ABA. I have some guilt about starting the ABA program with Adam but I want what's best for Adam and I believe this is it. I talked to my Dad about ABA and he agreed. He told me to do what I thought was best for Adam. My Dad is not the same person, he is so depressed and has lost weight. The boys and I visit him on a regular basis. I am trying so hard to move forward with the boys, when I see my Dad so sad I feel like I have taken two steps back. I hate that I feel like that. I feel like I am being so selfish. I miss my Mother so much, it hurts badly. I get a rush of sadness in the pit on my stomach when I think of her. I just really want the boys to be the best they can be. I want them to keep moving forward always. We will look back on special days, but for now these boys are my top priorities.

K.C. is not doing so well. His little face says it all. He looks so uptight and distant these days, I just don't know what is wrong with him. His crying and screaming has been happening everyday, when I try to calm him his s.i.b.s. are awful. He seems so uneasy and has been getting into alot of things he never did before. I don't know if it's a sensory issue or not but he has been dumping shampoo or any liquid he can find on the floor and rub his hands in it. He screams his head off when I stop him from doing it. He has been covering his ears as well. He has always covered his ears but now it's happening more. I really have to figure out what is wrong with my boy. We have a doctors appointment next week. I just have to get through to next week and try my best to stay calm, talk calm and not let on that I am upset or he'll become more upset. I sent our helper out to (Miss Tacey) Target to buy 4 cans of shaving cream and more shampoo and bubble bath. I can't help but think this is sensory issue. Poor little kiddo, I hope that this passes soon and he's back to himself. Our schedules haven't changed and we have really done a great job of sticking to our schedules, getting to therapies and being on time.

We hope all of you and your kiddos are doing well, it has been a very hot Summer here in AZ. today we are in 111 degree temp. We Will go for our swim this evening and then stop off at McDonald's for one plain hamburger, a large Diet Dr.Pepper, a Large French Fry, one grilled snack wrap with ranch for Big Brother, one Arctic orange shake for Big Brother and two blue powerades for Adam and K.C.


Niksmom said...

Tina, I haven't forgotten about you guys! I have a package all set to mail tomorrow (we hit a bit of a crazy spell around here!).

I'm really glad big brother got to go to camp; it's important for him to get time that's just about HIM sometimes. Sounds like he had a wonderful time. YAY!

I think you have to trust your instincts about Adam and ABA, too. Maybe your mother didn't like it b/c of the intensity of some of the work? It's so hard to see your own child struggle you well know!

KC sounds like he might need some more sensory input with squishy, liquidy stuff...or those "koosh" balls with the stretchy strings...they feel kind of damp and he could squeeze it, too.

I can't help but wonder...strictly based on our experience with Nik...has KC recently started a new medication or increased a dose on anything he takes? We see such a dramatic change in Nik when we have to increase anything that affects his central nervous system. He doesn't sleep well, his appetite suffers, he has more or more easily triggered meltdowns and he require so much more sensory stimulation. It's as if his boy and brain just cannot handle the abrupt change and so he reverts to some old behaviors.

Just a thought...

Sending you guys big hugs and warm thoughts! xoxo

~Miss Nelson said...

For KC have you tried a big tupperware type bin that people use for storage? You can put it in an area where you don't mind it getting everywhere and then put different sensory things in it... like rice, beans, water, or even shampoo (cheap 99 cent Suave). He seems to be seeking out sensory and stopping him from doing it might not help, he may be trying to tell you that he wants it. What about goop or playdough even? You can make lots of cheap homemade sensory things that might help him.

Please email me if you have questions.

Best of Luck!

Casdok said...

Lovely to hear Big Brother had a great summer camp.
And fingers crossed for Adam with his ABA, as you say its never to late.
I hope you can figure out what K.C.s behaviour is trying to tell you.
It must be so hard without your mum, but i think you are doing a fantastic job. (H)

Maddy said...

Everything goes a bit pear shaped around here in the summer. I think it's the change in routine. There again I think I'd be 'off' in 111 heat!
Best wishes

Mrs. C said...

Oh, I think you're wonderful to these boys. Hang in there. I don't know what to tell you about the sensory issue - that has to be so trying! But on the ABA, we had Emperor do that and it was the BEST thing for him. I think he might have been labelled autistic without it (you know, spectrum and all and he doesn't fall on it diagnostically, but that doesn't mean he doesn't have problems?? You know.)

There has been so much going on in your family. I am in awe that you're able to keep it together so well AND pursue new therapies for Adam. God bless ya!!!

Melissa H said...

So much news! First, I'm so happy that Big Brother got to go to summer camp and had such a positive experience. Second, I am thrilled to hear that you're starting ABA with Adam. I think you'll see a wonderful change in him. We all know how effective ABA can be in helping our kids understand boundries. Third, I agree with Maddy. Summer is just a tough transition for our kids. Conor has just recently gotten used to the new routine (and in 4 weeks it changes back to school!!)
I am ever in awe of you. You have got to have the strongest resolve of anyone I've ever known. Hope to meet you in person someday. It's okay to grieve, Tina. xoxo

mommy~dearest said...

Thanks for the update- been wondering about you guys. So good to hear Big Brother enjoyed himself at camp, and Adam is making progress with the ABA.

My "spidey senses" are saying it's sensory with K.C. too. The tupperware tub is a good idea, but I haven't had much luck with things like that with Jaysen. If he wants to squish around in the mud, he's going to squish around in the mud. Ugh.

I do hope you find some answers soon!

gretchen said...

You are doing so much for all three boys! You should be proud of yourself and I KNOW your mom is proud of you too!! Maybe she wasn't crazy about ABA, but I agree with Niksmom- maybe it was just too hard for her to watch. (I know that feeling.) I'm glad Big Brother got to enjoy himself at camp and be around some other kids, but it's great that he is happy to be back with his brother again. Hang in there!

kristi said...

I am sorry KC is having a rough time! I hope that you get it figured out but I know it is rough on you as a Mom.

Glad big brother liked camp!

You are doing amazing!

Baking a wish said...

Wonderful reading your blog. I can tell you have a loving and wonderful family. I can see your strength through your writing and the love you bestow on your children. Blessings!

Jess said...

You've tried the about any of the other seizure medications, like Topomax?