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.

Let the little children come to me

Once my son, Paul, had been diagnosed with an autism spectrum disorder, I couldn’t leave him anywhere. Not even church. One day, I bumped into the Sunday school teacher Paul had had the previous year, who asked me why she never saw him anymore. When I explained the situation to her, without a moment’ hesitation, she asked me to bring him to church the following week so she could watch him. To this day, I am amazed by the significance of that single act of obedience—turns out, it was the starting point of what was to become a huge ministry.

Sunday came, and Paul was happily reunited with Mrs. Rice in one of the empty classrooms at church. In the months that followed, she played games with him and taught him lessons from the AWANA book. One of the first verses he memorized was Ephesians 6:1, which he thought was: “Children obey your parents in the Lord, for Mrs. Rice,” instead of “for it is right.”

Let the little children come to me, said Jesus, and come they did. First Didi, then Ross, then Christina. That was 1996. Soon, one classroom spilled over into two, and it soon became a full-fledged ministry called Access Ministry. Thirteen years later, over 500 families touched by disability file through the doors of McLean Bible Church every weekend.

Until he left for college, Paul volunteered in Access. Here’s something he wrote in one of his college application essays: “I don’t have to think too hard or long to know what it’s like for those kids, because I was once just like them. So I do what I can to help them know that they’re not on some lonely planet in the left quadrant of the universe, and that I really do appreciate the many ways they show the inner workings of their enigmatic minds.

The other volunteers in the class often look over at me in amusement to see what I’m doing with the kids, whether it’s helping a boy build a cardboard structure only to watch him knock it down seconds later, or voluntarily crushing myself under a foam wedge while another kid lies on top of it. In a way, I’m an interpreter between the two worlds by helping volunteers connect with the students, and helping the students feel connected to the real world. At the end of each class, I feel good, even when I have had to physically suffer as an entertainer.

Most may not remember me years from now, but maybe a few will, just as I still remember the people who were kind and accepting of me when I was young. And people say autistics are not aware of their surroundings!”

But when you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed. Luke 14:13

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

I am the mother of an autistic son. He is 23 yrs old. Your story Welcome To My World really hit home in my heart, I too have days of crying and asking God why me and why Kevin? As Kevin grows so does my faith in God grow for I have a son who does not speak much but a word or two at a time, not potty trained yet, that has been fun, doesn't dress or undress or say when he is in pain. I have to find it.

Some examples in my life are not knowing Kevin had a cyst that was draining and in process of healing, since it was really close to rectum I did'nt see it until one day he bent over to pick up a toy off the bathroom floor and I saw what looked like a second rectum, I start crying calling emergency took him in to find polyanidal cyst which is fine clean and healing oh my gosh how could my own child have an owie and me not know it? Feelings of guilt set in. Why didn't I look before now. I never thought to bend him over and look. These wake up calls are pay more attention to child and world pay more atttention to God. He is there for Kevin regularly. 

Kevin had to have 2 spinal surgeries at age 16 for scoleosis. Kevin walked all the way down the hall the very next morning with a smile on his face. He needed only a little pain meds for God was holding him and his pain. Kevin has the ability to make your heart melt with his smile and he has the most beautiful blue eyes you have ever seen. My story may seem like rambling. I am constantly in hurricane mode with my thoughts. Even now I wonder what he is doing. While I'm typing, thoughts of him are with me every minute of the day and night. However, I feel blessed to be able to be reminded daily of how unimportant our own desires really are. I have a son that talks to Jesus and God without being able to talk to us humans. Kevin tells me granny and grandpa are with Jesus also and dancing and saying wheeeeeeeee,

I loved the short part of your story and will love to read the book. Please hurry. Thank you for reminding me I share thoughts and feelings with other women who also want to be the very best they can be with what God has chosen for them. Thank you.