Thursday, January 24, 2008

The Meeting

I really want to thank everyone for their advice before I went into this meeting.

There were 6 at the meeting, his teacher, me, psychologist, (smd classroom teacher who has been observing K.C.) mediator and our division of developmental disabilities case manger (long term care).

1. K.C. has regressed in nearly every I.E.P. goal that we created for him as a team.

2. K.C.'s self injurious behaviors are becoming so frequent that his teacher "only has so many teaching hours in a day to teach and his behaviors are going longer and he is apparently "lasting longer than the teacher has minutes to teach in a day."

3. He needs more help than they can provide him in his current program.

4. The program they want him in is for Severely Mentally Disabled students or "lowest functioning."

I have been crying all day long. Everyone at the meeting seemed to agree with each other that this program would be best for K.C. I didn't agree, in fact, I signed nothing, only the form that everyone signs to show who is in attendance.

I need time to think. K.C. is not mentally disabled he's Autistic, I repeated that over and over. He's almost 7 years old, he's just a little boy for Gods sake. I keep questioning myself, does Autism mean he's mentally retarded? I hope I don't sound totally ignorant. On his I.E.P. forms they have him listed as Autistic/Mentally Retarded.

I am not doing a very good job of advocating for K.C. Everything is becoming so overwhelming. I just need time to think it through. If I leave K.C. in his current program I am afraid he'll learn nothing. I think they have gave up on him and want him in the smd program.

Tomorrow I am going to visit this classroom. I am going to be totally honest, I am scared. Scared for K.C. In the back of my mind I had always hoped K.C. would be able to lead a good life as long as we did everything in our power to help him. I want him to have a good life, be happy, healthy. Now I am thinking maybe I have been trying to put the thought that yes, maybe K.C. will be very handicapped for the rest of his life. I may never hold a conversation with him, when I think of these things I feel like I am giving in to that life for K.C. so I put them in the back of my mind and try to think as positive as possible. Have I been lying to myself all along? Has everyone else seen K.C. differently all along, different that I see him? I see hope, he's smart, he loves us and I see him learning. Maybe not what the school expects, but I see him learning in life skills. He is making efforts to try to put a sock on his foot, he will go to the bathroom sink and if I stand behind him and tell him, "first we wash hands before we eat." He will put his hands under the water! I can then tell him, "dry hands", he will then walk to the towel and dry his hands! He really is doing so many wonderful things at home, many things. In fact his s.i.b.s. haven't been happening at home as much as his teacher says they happen at school.

I was so upset at the meeting I didn't even say half of the things I wanted to say. I felt like I was going to cry every time I had to speak.

Sunday, January 20, 2008

Thank you

Thank you all for your comments/advice. I appreciate it very much and feel better knowing that I ask the right questions.
Still not 100% sure on the SMD and what it stands for. It could be, Severely Multiply Disabled or Severely Mentally Disabled.

Saturday, January 19, 2008

Need Advice Before Meeting On Wednesday..

We have been having some issues with K.C.'s current Autism Program at school. I've kept quiet about K.C.'s school days these days. His teacher phoned me on Friday so that we can set up a meeting at the district office. I requested a "mediator" be at the meeting as well.

K.C.'s teacher feels that his current program "isn't a good fit" and "would benefit greatly being placed in a new program." She says she has K.C.'s best interest at heart.

The new program is called a SMD Program. I have not a clue as to what those letters stand for, I tried googling them but STILL haven't been able to figure out what SMD means. I see SMD but that's about it. I need help before going to this meeting, the phone call I received on Friday was a late call so I haven't been able to ask more questions because it's the weekend.

Anyone heard of this program? I did ask his teacher if children with Autism were in the program (just to be certain) and she said, "absolutely."

I need advice.


Tuesday, January 15, 2008

I have heard it all....

We have a disabled placard for our car. I hang it from our rear view mirror. We have had it for over a year now, we use it only when we have K.C. in the car with us. It's for his safety, has helped us tremendously when he's in extreme headbanging meltdown mode to get him to the car quicker. When we first decided to get that placard I had to really think on it for over a month. Seriously, I felt very guilty knowing that K.C. didn't have a physical disability and that we would be taking a spot away from someone who did have a physical disability.

I mentioned this to my Mom (who also has a placard for my brother) and she came by our house the next day. She had just come from the DMV with the form that needed to be completed by the Doctor for the placard. Our next visit I took the form, the Pediatrician filled it out and I took it to DMV. We got our placard.

My Mom said we need the placard. She reminded me of K.C.'s seizures. She said what if we needed to get out of the store quickly because he might have a seizure? We have learned that when K.C. is very quiet and very spacey a seizure isn't far away.

We went to the store yesterday to pick up a prescription, I had both boys with me. As I parked, I noticed a car pull into the spot next to us, in the disabled spot. Big Brother got out of the car first and I walked around to unfasten K.C. As we all walked together to enter the store I heard a mans voice say, "you folks aren't handicapped! Get out of that spot!" I turned and noticed that the person who parked next to us must have actually waited for us to exit to see if we were "handicapped." I stopped with the boys and said, "sir, my son is disabled, we have a placard hanging in our car." I pointed toward the rear view mirror. I looked at Big Brothers face and he looked furious, I knew if we didn't hurry into the store he was going to open his mouth and he wasn't going to say something nice. The whole time K.C. stood there like a good little boy just watching the parking lot. I noticed people started staring a bit at the old man confronting us. The old man said this, "where's his wheelchair!" Then "the mouth" I sometimes call him said, "you dummy, disabled doesn't always mean your legs!" I squeezed Big Brothers hand to let him know to shut it. I started to apologize to the old man for Big Brothers remark (I felt badly because this man was old, very old and there was know way I was going to disrespect him) then, I hear a roarous laugh coming from the old man complete with coughing (Big Brother said, "oh my God Mommy he's gonna die.") I started laughing, I laughed so hard I almost peed my pants. We just kept walking into the store and left the old man there to laugh. I think he was laughing at either being called a "dummy" or he realized how ignorant he was and for realizing a 7 year old was right.

I had a long talk with Big Brother about respecting his elders and have told him numerous times "when the adults are talking he is being quiet." Well sometimes they don't listen, but I can honestly say I was glad he did speak up. Maybe we all learned something about the word "disabled" and what it means to different people.

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.

Wednesday, January 09, 2008

Well Wishes

Our friends at, Parenting A complex Special Needs Child (Peggy Lou) has been sick. I want her to know that we are thinking of her and praying everything will be alright. She is going to try to keep us posted or have the pastor of her church keep us posted. She is having tests done so if everyone will please say a prayer for Peggy Lou and send her well wishes that would be great. Peggy Lou thinks she may have had a small heart attack. Her site is here,

Thursday, January 03, 2008

A New Year With My Boys

Happy New Year to everyone in the blogosphere. We are happy to be able to go into this New Year with you all by our sides. It is a journey and we love that we are able to share it with you all. I'd like to thank you all for reading about K.C. and Big Brother.

For those who may be new to this blog, K.C. is 6 1/2 years old and has Autism. Big Brother is 7 1/2 years old and NeuroTypical/Gifted.

Big Brother started back to school today and was glad to do so. K.C. had one ABA session then we had to hurry off to an occupational therapy appointment right after. He needed the OT session badly today. He has been lining up again, everything from our chairs to shoes to silverware. Boy oh boy does he get angry if I interfere with his lining up. His days away from school have really been tough on him. He loves for things to be the same and I think his lining up is his way of restoring routine. Now that the holidays are over, things should be much better.

Wishing you all a great 2008, thank you for joining us on this journey :)