A Mother's Thoughts at a Kindergarten Christmas Play

She is so excited! Her first Kindergarten play, the Christmas play. I've heard about it for weeks now and heard her singing the songs as she plays. Now maybe she's the one who should be nervous, so why do I feel sick? I anxiously await her to take the stage and quietly say a prayer. I don't want her to freeze up. If she does she will be so disappointed. I want everyone else to see the beautiful person I know. Will it ever be time, no disrepect but move it along chorus. I want to see my girl. O'kay, here they come. HOw does she look? Is she o'kay? What is her body language saying to me, her hands? She seems o'kay. Thank goodness! Everyone's on stage, time to begin. What? Is that a smile? Are her lips moving? They are! I think words are coming out;she's singing! She's really doing it! My heart melts and emotions flood my soul. Song over. Shew! Made it through one, looking good. Second song begins. Still happy, still singing. As the songs come and go she seems a little distracted and will stop singing briefly then back on track. Halfway through now and she is squirmming but good. To the unknowing person it seems nothing, but I know she is trying not to flap her hands and it's hard. She's happy, she's overwhelmed. She keeps it together all the way through. Many times my eyes well with tears, my face with smiles and my mind with memories. Not too long ago this would've never happened. So many programs like these at church and preschool have been heartbreaking to watch and sometimes impossible to participate in. I am so proud! What's more is she is so proud! You may say it's just a kindergarten play, what's the big deal? Who's not proud of their kid? Who doesn't want them to do well? I guess everyone does. It is just so different for me, for us. It's a miracle whether you take it for one or not. I know where we've come from. My daughter is autistic. I'm sure you had no idea. Most people don't, but she is. Because of that many special memories like this haven't been a reality. I look at her tonight and think we made it! She made it! We survived but better yet she was awesome! I couldn't be prouder if she had just won president, which she just might so someday if the scientist thing doesn't work out. There are so many things when you look at her you can't see but tonight she let you see a glimpse of her. Not autism, her, because autism is just a small part of who she is. And she is Amazing!

Written after Christmas play 2009 about my daughter, Lilli who is a proud Aspie.

URGENT URGENT
11 yr old Zakh charged with a felony!! Crime: AUTISM
Zakh had a meltdown at school because his FBA and PBA were not done. The two things the district agreed to do at the IEP they didn't do. He had a meltdown and when they tried to restrain him, he kicked the principal (once) and pushed the teacher (and her words she says 'I fell into the bookcase'...not that he pushed her into it.
He destroyed the room as they escalated his meltdown by nothing following the IEP.
The principal claim injuries...but no one went to a doctor or missed a day of work.
This is the good ol boy network in play. They want to get him out of the schools so they don't have to pay for his services..and yet the judge refused to let me homeschool him.
It is much more complicated...but he has his felony hearing 12 Jan...but when the district and judge found out this is all over the internet and international, they cancled the hearing. They are furious with me and the public defender has said this won't be good for Zakh. They want him to do a competency test with Dr. Dahoe in Little Rock. Zakh knows right from wrong, but not in a meltdown! The goal is to put him in the state hospital for the rest of his life!
PLEASE HELP SAVE MY GRANDSON!
I'd send you a link but I doubt it will go through.
I have documented EVERYTHING, every law they have broken etc. The DRC is helping with his IEP meeting (11 Jan) but not legal case. The state is doing an investigation. These people would not be doing this if what I'm saying wasn't true as I sent them all the documents I have.
PLEASE HELP, I'M BEGGING YOU. The public defender screamed at me "I DON'T HAVE TO TALK TO YOU OR THE MOTHER...JUST ZAKH! I asked you mean an 11 yr old autistic boy with MR?
And she yelled YES!
If you can't help, do you know anyone not afraid of Ft. Smith Schools?
Thanks
Carole Reynolds
479-459-2730

PS: Google Zakh- autistic and you will see the info about him.

How to cope with a learning disabled child and God’s help….

My son, Tryastan was diagnosed with Aspergers Syndrome, which is a high functioning form of autism, this year. He has just turned six. For all these years, prior to his diagnosis, I had battled with several aspects of his life which many doctors diagnosed incorrectly. I have three older children and they were normal in every way so having your fourth child diagnosed with a disability is quite a shock to the system.

Tryastan presented with several problems. He never sleeps through the night. He can quite easily survive on 2 – 3 hours sleep a night. He has the amazing ability to copy accents and has the American accent down to a tee, his Australian accent is also quite good. Tryastan at the age of 5 had an encyclopedic knowledge of dinosaurs. I was told by all his pre-school teachers that he was very intelligent yet there was always something missing. He would not easily play with other children and he battled to learn lessons no matter how I taught him and how often I told him right from wrong. He would easily walk in front of a moving car without the fear of being knocked down. The sound of a flushing toilet would sent him into a state of shock, he was adamant the noise was too loud.

Eventually out of pure desperation and my wanting to do the best I could for him I took him to an amazing Education Psychologist who diagnosed him with Aspergers, although I had previously being told by one of the pediatricians that I had gone to that he was autistic, I went into immediate denial.

How do you feel when you are told that you have a child with a medical condition that requires him to go to a “special school” and that your whole way of dealing with him has to change? I can tell you that it feels like a jumbo jet has landed on your body and has crushed the life out of you.. That is when you have to realize the following 4 things :

1. God blessed you with this child.

Every child is a blessing from God. He knows us and our every move and word from the time we are conceived in the womb. He knew that Tryastan had a disability. Children are given to us to look after and nuture and help grow. We are obliged to do our best for them and to train them in God’s ways and truth. The fact that God knew Tryastan in the womb and knitted him together with his disability amazed me. He made Tryastan unique, He made him! He knew that I would be his mother, not someone else – me! What an honour to believe that God felt me deserving of a disabled child, He knows that I have the qualities to look after him, I just had to believe that myself.

2. Don’t ever question God’s methods and reasons.

I have never asked God why. What makes me so unique that I should not get a learning disabled child? Does that mean that my neighbor or friend is more deserving? No, I am. God’s children with disabilities and hindrances in their lives are special to Him. They are given to those who He knows will be able to cope with them. I firmly believe that when we meet Him, we will be questioned on how we managed with the gifts He gave us. It does not have to be a disabled child, we are all given gifts and it is our responsibility to use them to our best ability and to His purposes. Realise that you are blessed richly to receive this gift. It is not a curse. Non-Christian people have said “shame” and “how did that happen?” to me. It is not a shame and what does it matter how it happened, it is God’s purpose for me and Tryastan so why question Him? Is He not that much more wiser than us?

3. It is hard work.

Let me tell you that raising a disabled child is hard work. There is not a day that goes by that I don’t feel like giving up, but God is always there to give me strength and to pick me up when I am down. I sometimes go to bed utterly exhausted and feel like I could have done better, but I am a child of God and He alone gives me the strength to cope and I feel that as long as I have done things in line with His word and with His help and guidance, who am I to question. None of us is perfect, we are all human and have to plod though trials and tribulations that come our way in the best way we can. When I feel that I am an utter failure, God gently reminds me that He still loves me and that I must rely on Him to get me through the daily trials I face.

4. Be grateful for daily blessings.

Each and every day is special. Tryastan is a special child and there is something every day that he has either learnt or has done that have amazed me. We need to look at the positives in our lives and focus on them instead of the negatives. Everything Tryastan learns is an achievement to me, and I again thank God for these daily little miracles in his life.

I just want to encourage those out there who have children with disabilities, God is the answer to your frustration. He wants you to do the best for your child and has already given you the tools necessary to do this. A disabled child is not born with a manual on how to cope with them. They come into this world to parents who already have that knowledge inside them. You do not need to study for a degree of how to raise a disabled child, they do not come with a “How To” instruction manual – God is your instruction manual.

I thank God for a supportive husband, a caring and supportive family and for the amazing school He has placed Tryastan in. They are Christian based and have already made massive progress in Tryastan’s life.

Thank you God for all the people in our support system, and I pray that all parents out there with a disabled child or children draw on You for strength and that they realise what a blessing it is to have being given a special child to look after . Thank you Lord!

From Heidi 

No, I'm not a mother with an autistic child, I am a father with two autistic children. You didn't ask for my story but I am submitting two links anyway.

http://seanmacnair.blogspot.com/2006/01/fathers-story.html
http://seanmacnair.blogspot.com/2009/09/blog-post.html

These stories represent two sides of the same coin, and are as honest as I can possibly get.

Sean MacNair

Last week my sons started asking lots of questions about the 4th of July. No, not the questions about how we would celebrate or if we would go visit family or if we would have a cook out. No, their questions were about fireworks, specifically, would they have to hear any?  If you have a child with autism, you may experience the extreme anguish your children feel when they hear the loud popping noises of fireworks. I don't particularly care for loud noises either, but my kids absolutely obsess about this noise. They start worrying about a few weeks ahead of time.  Do we live in the city limits?  Can people shoot off fireworks in our neighborhood, and so on.

One morning last week, Nick said, "I wish we could just skip the month of July." I said, "oh, you want to go straight from June to August since that is your birthday month!"  "NO," he shouted at me. "I don't want to have the 4th of July."  By Thursday, the boys had made sure they knew where their earphones were and had them at the ready. We've used noise reduction earphones for a long time for loud music, loud movies, etc. We were supposed to go to Missouri for the 4th of July weekend and visit my brothers and my mother.  However, on Wednesday and Thursday when we discussed this in our family and the boys realized that there would be no avoiding fireworks, they refused to go. My brother lives in a rural area and there were definitely going to be fireworks there. I've learned to at least avoid exposing people I love to the meltdowns that something as simple as fireworks can spawn.

On Thursday evening, a neighbor set off a few fireworks a block or so away.  Nick and Will became frantic. Nick had on his earphones and was carrying the telephone around. He wanted to call 911.  I told him that fireworks were not an emergency and that he could not call 911.  He dialed the neighbor's phone number repeatedly. They did not answer (thankfully).  He left wild messages for them to stop shooting off fireworks.

Friday night was a repeat of Thursday night and it wasn't even the 4th of July yet. On Saturday, I got out ear plugs to go under the earphones. The boys had them in by 6:00, just to be ready. At the first sound of fireworks nearby, they jumped in bed and threw the covers over their heads.  They slept all night long with the ear plugs and earphones securely in their ears. Just for good measure, a gigantic storm, complete with thunder and lightning followed the fireworks.

This morning, there were smiles all around.  "No more fireworks, right Mom?" they asked in unison.  I smiled, hugged them tight and thanked God that another 4th of July had passed.