Tuesday, July 22, 2008


K.C. has been having awful self injurious behaviors. I am really trying to understand what is setting him off. He can't stand to hear the water running or much of any noise lately. He doesn't want to take a bath because of the running water, he cries, hits himself and has yanked alot of his hair out down to the scalp. I am totally heartbroken. I can't sleep because I am worried, I just sit and watch him sleep, thinking about him, how can I help him? Will he always hurt himself? I wonder if he's very sad? There are so many thoughts going through my head.
I have been telling myself that not all days are going to be good. Some days will be tough, but most days are good.

I did take K.C. to the doctor today, his ears are fine, I thought it may have been his ears but the doctor said his ears looked good. The doctor really didn't offer any suggestions, as a matter of fact she just listened and stared at K.C which made him very antsy. She increased his Risperdal to 3 mg. I want K.C. to feel better but I am worried that the Risperdal will make him eat even more. He has gained alot of weight on the Risperdal. I am just praying that he feels better and I figure out what is going on with K.C. It must be so frustrating for him, he can't communicate to me how he feels, it has to be very frustrating.

When K.C.'s s.i.b.s. are happening more, Big Brother gets very worried and he is always on edge. He feels it is his place to watch over K.C. and stop him from hitting himself. I explained to him that it was Mommy's place to help K.C. through his s.i.b.s. and told him I loved him and thanked him for helping but told him, "I can always help K.C." Big Brother isn't very happy these days and has spent alot of time putting puzzles together with Adam or watching Disney videos.

Tomorrow I am going to have to cut K.C.'s hair very short so that he can't grab it anymore. His lip is busted from head banging, tomorrow I am just going to let him have a day without therapies, a K.C. day to do some of the things K.C. wants to do.

Big Brother and Adam are well. Today they watched Edward Scissor hands and then they watched Jumanji. They watched it upstairs away from K.C. because K.C. screams his head off if someone suddenly pops in a video. He runs around the house in a complete panic crying and covering his ears. I put a television in the kitchen and Big Brother has been using headphones to listen to whatever he tries to watch, if K.C. doesn't scream.

I just want all the boys to be happy. Please say a little prayer for K.C. to feel better, I am worried so much about him.


Casdok said...

Oh i feel for you. Cs sibs are through the roof at the mo, but there is a reason for it. When i understand his behaviour it makes it a bit easier. But when you dont know the cause it is so hard as you just so desperatly want to help.
I actually found that Risperdal made no difference to Cs Sib. So evetually took him off it very slowley. He has been happier and more aware since coming off, and just use a helmet.
Hugs to you all.

Casdok said...

Joel over at NTs are weird has just written a post about helping autistic people.


Niksmom said...

Saying prayers for you guys. I sent you an email with a long message. xo Niksmom

mommy~dearest said...

You're in my thoughts as well. That lack of expressive communication is so difficult. My son did great with(and is still on) Risperdal. He gained a lot of weight too, and self injures when he's upset. I don't know if Risperdal is supposed to target those behaviors or not- his psych suggested a different med for that, which I turned down because it's sporadic.

My heart goes out to you- it is so hard to watch your child hurt himself. Bless Big Brother's heart for wanting to help too. Maybe you could tell him ways he can help, whether it be time away from K.C. or whatever it is he needs.

When K.C. self injures, is it accompanied by a meltdown, or is it a stand alone behavior? Jaysen's is frustration, so if I can keep the frustration to a minimum, it helps. If he does it due to a meltdown, sometimes I just have to let him ride it out.

Cutting his hair short is a good idea for now, but you're right that it doesn't address the core issues. I do hope you find something out soon.

Melissa H said...

I was JUST going to email you today and then I come here to this post. Check your email. xoxo

Eileen said...

Tina, I am so sorry to read about how K.C. has been hurting himself. I wish I knew how I could help. It must be so hard on all of you. Hang in there! It does sound like there is a lot of sensory issues at the core of why he is getting so frustrated. Will K.C. where headphones to block out some of the noise that he seems to be more sensitive to lately? I am sure that the heat doesn't help and having to be stuck inside with the air conditioning most days. My heart goes out to all of you and I will most definitely pray for you.

Jerry Grasso said...

Demetrius has a hair twirling stem. He'll get off the bus from school with matted, or standing straight up, hair that smells like mac and cheese or ketchup...or the good lord knows what.

I so I cut his hair short....like a refugee or cancer patient recovering short.

It works, until it starts growing out, of course.

Hang in there.

Lora said...

My dear sweet friend, More and more, every time I read about all the stuff that you go through I am amazed that you haven't pulled all of your hair out instead you are always so loving and patient, compassionate and understanding. My heart goes out to you and kudos to you for being so resilient and strong. You know that the boys love you so dearly and deep down inside they know that you are doing what is best for them. I am going to write to you/send you an e-mail and hope that there is something that I can say to help you feel empowered and loving towards yourself. My wish for you is that you give yourself compassion and understanding and to know that you are one heck of an awesome mommy!!!

Karen said...

Sorry to hear about your son K.C., As you said in one of your posts and it's actually the title of my blog. Take one day at a time. My thoughts are with you.

Mrs. C said...

Oh, wow, we cut G's hair short when he was little because he'd constantly twirl and pull it as well. Not as badly though. He DID grow out of it later, and yes, he IS autistic. Hope it's getting better for you.

Oh, I read these stories and feel so bad for the kids and the moms. And the siblings! :[ ((hugs))

Casdok said...

Me again!
Theres an award for you over at mine! :)

Bobbi said...

I just found your blog from another site. I really like your blog. I'm sorry things have been so hard for you lately. I know the feeling about the siblings having to worry about the children with autism or having to go out of your way to make things right for the sibling. ((hugs)) I hope the haircut helps with the hair pulling. Check out my blog if you want to. Bobbi

JUST A MOM said...

hey I ma late again sorry I wish you would stop by and let me know you have posted... like you got time for that huh,,,, I am so sorry KC is having a hard time... I pray you can figure it out... maybe the heat I kinda get like that with this heat.... ok maybe jokes are not good.... ((HUGS)) I pray for your dad too... I am sure it has to be hard on him. wish there was some way I could help you. let me know.. :)

A Bishops Wife said...

You are in my prayers.

I know I have not been around much lately because I am so busy doing but, You are one of my heros. You are a very special and selfless person and I know God is watching over you.

redheadmomma said...

Tina, I'm so sorry K.C. is going through so much right now - and you right along with him. Don't give up, keep looking for answers - do you have access to an OT who is an expert in sensory issues?


Two Twists of Faith said...

I haven't been by for awhile, but can I just say...after reading and getting caught up...that you still continue to amaze me. You are such a beautiful and caring mom and big sis. I pray that you continue to keep you positive attitude, stength, and the agape love that you show. You know KC, and you know when something is up...hope he is better soon.

Also...I so hear you on the Risperdal...we have been managing Sam's weight for 2 years on it...and it gets so hard when he is hungry and I try to hold him off...as that often times leads to more melt downs and SIB. It is such a tricky balance. We did start some anxiety meds that almost seem to be balancing the hunger issue a little better (that wasn't why we started them...but if it balances things a little and slows weight gain there might be a plus!).

Love ya and been thinking of you and the amazing love you show for your brother and boys.

Melinda said...

yes cutting the hair will help.....and giving him other things to twirl or fidget with in his hands might also help. When Noah was in preschool he pulled and twirled his hair so much he pulled it all out on top.....he looked like a monk with hair left only all around the sides but nothing much left on top at all but stubs! It got better and eventually stopped once we kept handing him other things to twirl and fidget with every time we saw him start with his hair. It took time but did eventually help and work.

I am thinking about you all .....praying for you too

Kittymama said...

I feel for you, and wish for better times ahead. I know the helplessness, the anxiety, and the fear that come when our kids do things we do not understand and when they hurt themselves or others. I know; I've been there.

But hang in there and know that we are praying for you and the boys. It may be all we can say and do for you, but I hope it gives you something to look forward to.

My son was violent for a long time, and hurt himself and others. He has been on Risperdal for almost five years, and while it did and still does help, sometimes, there are just things that set him off. Today, while the hurt is fresh for you and your son, it may be hard to see light at the end of a tunnel, but trust me, it's there. Just have faith and believe. God bless!

Donetta said...

hello, ,big hug . Man this must be hard on you. Just a thought. B12 sub lingual (under the toung) When my kids get the sensory stuff going sometimes this really helps. b12 deficiency effects nero
sorry I'm typing one handed. I get the sweet tasting pill form and give them each half at night and in the morning. you would be surprised in the difference in the kids. really helps to calm them. Doves meds ate up her b vitamins.

Mrs. C said...

Checking in... hope it's going ok. Keep hoping for a post saying things are calming down a bit. I don't know how to say without sounding corny, but thinking of you and your struggles. You always are so honest about them, too. Do you have any words of wisdom or websites to share? I noticed in the bar up top that KC is non-verbal. So is my son J but he also knows a few signs. :]

Peggy Lou Morgan said...

Hi Tina:

I have been there with Billy Ray when no one, including me, could figure out what was going on. As you probably remember Billy Ray was pulling my hair out (fortunately I have lots of it)when he had a leaking appendix and enlarged pancreas in 2005. They couldn't detect it because he was on antibiotics for skin problems which were masking the lab test results. When I finally convinced them it was physical and not special needs related they did a catscan and found it.

During an unrelated time Billy Ray's behavior after he had used Risperdal for a few months worsened and when they increased it the behavior worsened. I know that Risperdal has worked for KC but it might be something you could look it at least to rule it out.

Take care,
Peggy Lou