Saturday, January 12, 2008

Love from K.C.

(K.C. has been twisting his little fingers in all kinds of positions these days, looks kinda painful but he's happy in this picture)

There has been a very icky brown ring around the city this week. K.C. has had Asthma problems all week and we have been back and forth to the doctors office twice this week. The first time we went K.C. couldn't take more than 10 steps without wheezing and coughing up a storm. The doctor listened to his lungs and said she heard crackling and wheezing. She gave him a shot of Solumedrol (steroid) to help him breath. We have been using the nebulizer at home but K.C. is terrified of the noise it makes. If only it didn't make that loud noise! Big Brother and I have been setting the little machine up when K.C. falls asleep. We set it on the floor and cover the nebulizer with a heavy quilt to hide the sound. You can still hear it but not nearly as much if it were left uncovered. We hold the mask as close to his nose/mouth as we can, so far it is working and I am very relieved. Tonight he has started to feel better, finally. It's nice to see his smiling face again. He knew he didn't feel well because he would walk as little as possible. He has been on the couch most the week.

I am amazed at Big Brother. This little boy does so much on his own I feel badly sometimes. He asked for an alarm clock and actually gets up in the morning himself, gets his uniform on and makes a bowl of cereal or oranges for breakfast. I watched him this morning and sat with him as he ate his cereal. He said, "mom you can go back to sleep until it's time for me to go." I nearly lost it. I wanted to cry. I felt horrible that my 7 year old has become so independent because he has a brother with Autism. I just feel like I am not giving him nearly as much attention as I do K.C. I admit, K.C. takes up alot of my time and Big Brother always winds up helping me / or doing things for himself. It shouldn't be this way I keep telling myself. I talked to Big Brother about it during breakfast and he said he was worried that I wasn't getting any sleep because K.C. has been sick this week. He then said, "it's o.k. Mom, I'm not Autistic I can help myself." I didn't hear any resentment in his voice at all but still I feel awful. Some days I feel like Big Brother is missing out on typical childhood things because he has a brother with Autism. He's had to grow up quickly. Has anyone experienced what I am feeling? I would love to hear from you :)

Big Brother loves K.C. dearly and I know that K.C. loves Big Brother. You should have seen Big Brothers face tonight. Both boys took a bath together, Big Brother always tries to get him to play in the bubbles but K.C. always turns away from him so most of the bath time is spent with Big Brother looking at K.C.'s back. Big Brother makes a fake beard with the bubbles and wears it on his chin trying to get K.C. to laugh. As I wrapped K.C. up in a towel to get him dressed, Big Brother is always getting dressed right beside us as well. Tonight as Big Brother finished getting dressed ahead of us he sat on the floor and we talked as I dressed K.C. Then out of the blue, K.C. leans over and touches the top of Big Brother's head. He's not looking at Big Brother but he's just touching the top of his head very lightly, I swear it looked like he was trying to show him affection! I seen it, I really did. Big Brother didn't move an inch. You should have seen the smile on his face! K.C. giggled a little bit then took his hand away. Big Brother said, "did you see him, he loves me!" He was thrilled! It was like he had been given the best gift a kid could possibly get. I have never seen Big Brother so thrilled in my life. He sure felt so proud and I hugged K.C. and said, "you love Brother." That touch on the top of Big Brother's head helped me so much today. I felt so good for Big Brother, it was like all his hard work with K.C. paid off today, he was acknowledged by K.C. and even shown love. Today was incredible.

17 comments:

Casdok said...

K.C. actions so touched my heart. How wonderful for Big Brother, and you.
Both your kids are amazing.
Oh and C also twists his fingers in all kinds of positions!

Maddy said...

Unfortunately I can directly relate to the painful experience of the typical sibling but I have yet to find any solutions.
Best wishes

Mom without a manual said...

That was truly a magical gift! What a wonderful experience for Big brother. Yes, he is an amazing little guy! It is so hard to watch our siblings learn such mature skills so early. But you all seem so amazing...it will be okay!

Niksmom said...

So glad KC reached out to big brother. I'm sure it made bb's evening! :-)

Nik does the same thing with his fingers, too!

On the noise from the neb...does KC use a walkman/iPod w/headphones? Maybe try to do it with that on at the same time?

Jerry Grasso said...

When Demetrius and Maya get it right together, and play like they are doing right now (maybe because they both have pink eye they are bonding in some special way :-))...its magical.

Hang in there and thanks for hitting my blog!

Melinda said...

very beautiful, touching post

JUST A MOM said...

OH Tina I am sure it has to be hard seeing Big Brother doign on his own BUT REMEBER tha tat 7 they DO do that anyway. WAIT SAVERS IS HAVING A 99 CENT SALE when what is 99 cents everything?? it will be so packed!!!!!

kristina said...

What a lovely moment from KC; hope he is feeling better. In no small part thanks to a loving family---

Mom to JBG said...

Luckily, typical siblings seem to put a lot of importance on those little moments.
My older son is very happy when one of his little brothers lets him hug them.

Melissa H said...

Maybe part of his independence is simply being a big brother, regardless of KC's autism. I remember saying similar things to my mom because my brother (almost 4years younger) required more help, of course. And, I felt like a little mother. I was very proud to be able to do things myself so that my mom could take care of my brother. Big brother might feel the same way. :-)

Lora said...

Tina, this post is so touching and moving, I feel for you all that you have to go through each day with both the boys. I am so happy to read about the experience of K.C. making some effort to show affection towards Big Brother........I nearly cried because it is so sweet. It makes me so grateful that I know you guys and get to read all about the gestures that K.C. makes and little yet very significant steps toward progress. He seems to be more aware at times and it truly makes my day to find that he actually showing signs of trying to make a connection with his brother. Your home is so filled with love how could he possibly do anything other than to show love? I do hate to hear that he is having such a hard time with his breathing, I sure do hope that he is not feeling discomfort, I do understand though that you are doing everything within your power to help him have a higher quality of life........you and Big Brother are helping him so much.

We love you guys dearly....kudos to you and to Big Brother for surrounding K.C. with so much love and affection. He is bound to keep showing progress and lead the way to happier times.

Hugs from us!!!!

gretchen said...

Oh, Tina- I worry too that Tommy will miss out on some things because of Henry's autism. My situation is different so far because Tommy is the younger brother. But I bet it won't be long before he is trying to help with Henry. In fact, he already does, as far as trying to talk Henry into doing something when Henry is arguing with me.

I know that Big Brother knows how much you love him and how much you appreciate his help. As long as you keep telling him how proud you are and K.C. keeps showing him some love, you will all be fine!!

A Bishops wife said...

Wonderful post.

Ange said...

Sounds like Big Brother is growing and thriving. I just think, If KC didn't have autism and Big Brother was getting up and being independant, would you be upset? Probably a little bit about how fast he's growing up. But you'd also probably be pretty darn proud at the leader and independance emerging!

And that light touch on the head? That moment of love and gentle reminder of "Big Brother I may not show it all the time, but I know you are here. And I am glad you are here." That moment is a moment that Big Brother will get that has brother loves him and that he loves his brother. Because they are brothers. Not autistic brother and nonautistic brother. But brothers.

Neither of my children are typical. Some days they both really need me (other days they do fine) but I only have enough to give so much to both of them. The squeeky wheel often gets the grease, but when they're both squeaky.. well they get WD40 or something not quite as thorough as grease, but it still does the job.

Many hugs.

Donetta said...

Hi Tina, I hope that the asthma is clearing for K C, Wow what a wonderful gift for all of you in the simplicity of a child's touch. Big brother is at a developmental stage of more independence (google developmental stages), but I do hear your heart. When we brought our Dash home from Russia I lost three years of Doves early childhood (3yr-6yr she is a blur) moments to all the chaos and struggles we had to go through. He was so sick. We had the parasites internal and external the emotional roller coaster of a lost job unemployment for over a year, a car wreck that left me medically disabled for 9 months as well as all the surgeries I had during her first few years and the hysterectomy 6 weeks after Dash got home. It was so hard to parent her and the losses of those days weeks months and years grieve me.
I found comfort in this...
That every thing we go through makes us who we are and become. It will be the choice we make in responding to it all that will prove us out. Hardships build character. The loss though is comforted in this alone ...grieving it, the grief process of denial, anger and letting go. It is what it is and the best that we can do within the limits of what it is has to be accepted. I still have remorse though. I think that it will always be a part of our stories Tina.

kristi said...

I have felt guilt over this very same thing. We have had to leave places because of TC's meltdowns. I have cried all the way home but Sara says, "It's okay Mom, I still had fun." Sara is 12 so she understands a little bit more than your typical sibling but I do feel she misses out a lot and our extra money goes on therapy so there's nothing left. Sometimes I just pick her up early and take her for an ice cream or to the store for something special just to let her know how very much I love and appreciate her.

Mrs. C said...

"Patrick" is nearly 15 and gifted. He has five younger sibs, two with autism. He hates that whenever things go wrong, HE is the one called on to help (think I'm going to have my screaming 13-y-o pick up the baby? Me neither.)

He gets no freedoms as he is expected to be at home to help. We are all on one income, so you can imagine the boodles of money we have to give him for Ipods and new clothes.

I don't have a solution either, but talking with older kids does help. At least they "get it" in their heads, if not their hearts. I'm sorry to be disheartening, but it gets MORE difficult as the children get older and want to bring friends over, etc.

Patrick and G share a room, so there is nowhere for him to be alone with friends. It stinks, but he is learning to deal with all kinds of people that way I guess. It is also good for our autistic kids to have people around all the time in the same room (with the POSSIBLE exception of potty time) b/c they learn to deal as well.