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

Hello again Pat,

A few months ago had written a message not knowing you would personally respond to.Just wanted to give you a little update. In my last email I sent to you; I said I had seen you on a TV show and wrote your web site address because I related to the situations that you had been dealing with your children.And I submitted some examples about the Christmas lights and the decorations on our tree;and him spinning in a circle while his eyes looked in the opposite direction and how he couldn't eat warm foods.

At the momment I had written to you I had no insurance and was holding back to get my son tested.( I didnt know there were some free services but are very limited)He now has insurance and was imediately seen by his physician he was waiting patiently since he knew of my situation. As soon as he was seen he was ordered STAT to a pediatric neorologist, on June 3 he was seen and diagnosed with sensory integration disorder.I relayed the diagnoses to my pediatrician and he was upset said NO that is not it.So he is sending me for a second opinion. Since we live in Arizona the neorologist made a referal to AZEIP (Arizona Early Intervention Program) we had a nurse come to our home for an interview.She was there with us well over an hour and he didn't try to look at her or interact with her. She would call to him and try to get him to play with her and he didnt respond.She said to me he had many signs of Autisim and his speech is delayed by more than 50%.She told me their program only offers one type of therapy at a time but due to the fact that she had some major concerns she was going to talk to her supervisor and get my son into Ocupational therapy and Speech therapy.She to said it was a good idea to get the second opinon and to get him seen by a Developmental Pediatrician and a Pediatric Audiologist for a diagnoses.

The one concern I'm now starting to have is that I see him getting more aggressive and he is beginning to hit us with whatever object he has in his hand and he even went as far as biting my sons shoulder yesterday and wouldnt let go. I'm speaking about this to his doctor tomorrow so I will wait and see when he gets to see the pediatric neorologist or developmental pediatrician.Your website is very helpful and easy to navigate.

Thank You Pat

Patience is a gift that we share with our children.

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.

I am Jessica and I have 2 boys. Caleb and Nathan. Nathan is 3 years old and he does not have Autism. Nathan is a handful and a half but a smart,fun and loving little boy. Nathan has been evaluated and mostly just lacks social emotional skills. So for now we just have to keep a eye on him. Caleb is almost 5 years old and he has Autism. Caleb developed perfectly until he reached 15 months old. He went in for his routine 15 month check up, got his vaccines and a few days later had Salmonella (?). He was also hospitalized for breathing trouble.

During the next couple months I watched my son slip away from the little boy he once was. He was a talker and he loved playing with his cousin who is 2 months younger then him, When is was 18 months all he did was scream, head bang off everything he could, bite, hit, kick etc. He lost all his communication skills. At his 18 month check up I was told to wait it out because since there was a new baby around he was having issues. We lived with my brother and his wife and they just had a new little baby boy. I knew better but I did not want to think anything was wrong with him. I kept taking him back in and I was always told give it time. By his 2 year check up he was so far behind it was crazy.

We did start using a Birth to Three 5 months prior to him turning 2.By the time Birth to 3 came in his speaking ability was at the age of a 9 month old baby and he was 19 months old.
Finally I was given some information on where to go and I started the process. I could not believe it took almost another 4 months to get him in to see the team of doctors and the fee they wanted that state insurance did not cover. After 3 days of driving 170 miles round trip each day we got the Autism diagnoses with regression. It was so hard to grasp. I had never heard of it before and from what I read I was scared to death. The developmental pediatrician was a nasty rude careless woman. She blamed me for his behavior and said I was unwilling to try to help my son. I did everything I could. I drove so many times to get him help but these people always were playing the blame game. Well if you would only do this he would do better or your not trying hard enough, that is what I would hear. So I found a new Doctor who is a Neurologist and she has been wonderful. She has told me Caleb is High Functioning Autistic with ADHD and Bi Polar disorder. With meds he has done pretty well. Alot of his meltdowns are from lack of communication.

Caleb started school right after he turned 3 and this year he goes to kindergarten. He still is very delayed in his speech and other areas. He will have a teacher who has her own child with Autism which makes me feel better. He is doing a in home therapy program and he has come along way. It is hard to see him and then see his 3 year old brother just whizzing past him in everything. I cry because I can not make it better. I cry because there are some many things I want to try but we have no money to do so. All these stories about DAN doctors and GFCF diets make me have hope but we can not afford that treatment. We barely make it now. So for now we just have to keep doing the Speech, OT and in home program or he loses skills.

Even though Caleb has Autism he has always remained very loving and affectionate towards others. He shows empathy some of the time and he is the first to give a hug and a kiss. I would tell other parents just love your children the way they are because they are perfect. My son might not talk like others, play like others or act like others but he is perfect because he is mine and he is wonderful.