A Prayer an Autistic Child

by Elizabeth Burton Scott

Cover this child with Your grace and Your mercy and pour into me all the love and patience that my body can hold, for he is Your child first.

Let me draw from You all the love I need to give, for it takes our love to help him live.

Only the good, dear God; let me focus on the good - the sweetness of his face, the twinkle in his eyes, the love in his smile, the gentleness of his voice, the tenderness of his touch, and the goodness in his heart. As I lie down at night to sleep, help me forget what I need not remember, and let me remember only the good.

Show me how to live a new way, focusing on the joys of each day.

Bestow upon me a deeper love; help me to love him the way You love us, with a love requiring tremendous sacrifice and the relinquishing of our hopes and dreams for what we wanted him to be. Show me how to love him in the most trying moments, O God, just as You love us in spite of our shortcomings.

In your eyes, perhaps we are like a child with autism:
Repeating negative behaviors that we ought not me doing;
Saying things that we ought not to be saying;
Being silent when we ought to be talking righteously;
Fixating on things we ought not to be seeing.

Yet in our frailties and weaknesses, You see our goodness. You forgive us and focus on our strengths. You protect us and lead us down the correct path. You are pleased with our success when we have triumphed in a task. Your light guides us through our darkest moments.

Let me teach him Your ways, O Lord, so he will rejoice in Your love. May he see the goodness of God and put his hope in You. Let him fully understand how much he is loved by You and know that Your love will sustain him.

When he fixates, let him fixate on Your goodness.
When he is silent, let his true voice be heard.
When the tantrums persist, calm him and let him find solace in Your love.
When he cries, let his tears become mine, and I will carry his burden.

Forgive me when I lose hope and just want to give up; When I covet and ask, "Why him, Lord?" When I get angry with you for giving me this trial; When I feel ashamed or embarrassed because others don't understand our plight; When I fail to trust You to bring us through this; When I want, seek, and crave an answer to a problem that knows no creator; When I doubt and fear he can't be healed.

For the healing that we seek may end up being our ability to live peacefully with this challenge... and find joy in the journey on the road less traveled.

Do not allow me to second guess what I know to be a miracle of life.

Let thankfulness dwell in my heart, O Lord, for a faith deep enough to sustain me on a daily basis; for hope and belief in the possibility of improvement; for the unconditional love that allows me to serve him; for the new person I have become as a result of this journey; and especially for this blessing of a special needs child. His pure and righteous heart is a precious treasure, worth more than silver and gold.

Autism: I'm Still Here

Since we started telling people about Jesse I have recieved MANY questions. Here is how I decided to answer some of those questions.

Squinty eyed smiles

I have been so busy trying to learn all I can to help Jesse. I have read 4 books with in a week. I think I will take a break for a bit though. The best thing I have found was a free resource on the Autism Speaks website. It is the First 100 Days kit. It was so straight forward and not so technical, which is the problem with the books. They get so technical and I feel like I need a medical degree just to understand them.

Jesse had speech on Tuesday and that went pretty good. He is still mostly only using one word at a time. He is trying to communicate though and that is very encouraging. He is starting to get interested in shows like Sesame Street and Mickey Mouse Clubhouse, he can recognize and say the names of several of the characters.

I am glad that he is such a happy little guy. It sure makes it easier to deal. I love his goofy little squinty eyed smiles. They truely brighten my day!

Jesse's Progress

Jesse played with play doh and actually touched it with his full palm. He still acts like he doesn't like the texture of it though. He played with it for about 10 mins before saying "all done" and putting it away himself. He pretend played for the first time for just a moment with his Little People bus and people.

Our Journey with Autism begins

I have thought for a long time that our youngest, Jesse may be Autistic. It was things like him not wanting to be held and arching his back when he was, lack of eye contact and loss of skill that he had as well as his need to spin, trouble with change, need for routines and focus in things that other kids didn't even notice. I asked our pediatrician a few times if Jesse could be and was told we should wait until he was 3 years old.

My suggestion for anyone going through this and wondering "could it be" is to keep asking. Find another DR. Do NOT settle. You don't have to wait until a child is 3. The thing that makes the BIGGEST impact is early intervention!!!

We are involved in our area's PAT program and our leader had noticed that Jesse lacked in many areas as well and not making eye contact. In fact he only started making eye contact about a year ago at the age of 2. She refered us to our states early intervention program. Jesse started with speech therapy and occupational therapy and was diagnosised with Sensory Processing Disorder in June. Then our OT told us about a DR that through the program would evalutate Jesse for Autism. So we decided to do that.

Jesse was diagnosised with mild to moderate Autism Spectrum Disorder this week. We don't have a full report yet... that will come sometime next week. The DR said that if we keep working with Jesse like we have then he should, in a few years, be main streamed in school with little to no apparent Autism.

The DR was great and took a lot of time with us. She said that its rare that both parents are on board when Autism is suspected and that it will make such a big difference for Jesse. We are trying to stay positive but at the same time we are dealing with our emotions as well. I have been on an emotional roller coaster the past few days even though I was sure that I had already come to terms with it. There is just so much to learn and so many things to think about.

I have started reading books and looking into resources to help us on our journey. One thing that was suggested was to start journaling, not just to keep track of Jesse's progress but also to help me deal with the emotions that come with being a parent of an Autistic child. My hope is that this blog will help with both of those things but also be a way for Jesse to know that no matter where he is in his progress we love him for who he is .... no matter what.

Catching up on things!

Wow! Soooo much has happened since I last posted in October. Chuck traveled with work for 5 months. He was home on the weekends and gone during the week. It was really hard on me but I am happy he is home and working in the store again.

In January, Jesse started the process of being evaluated for delays and Sensory issues. He is pretty much delayed in all areas but the biggest delay is speech. The sensory eval showed that he has Sensory Processing Disorder. Basically he has a hard time dealing with certain senses. The state is sending a speech therapist and a OT to our house to work with him on a weekly basis. I hope that he catches up so before preschool. I would really love him to attend the same one Bryan went to but if he isn't caught up he will need to attend the preschool at the elementary so that he can go to the therapists there.

Bryan completed Kindergarten with flying colors! He is working at a mid-1st grade level for math and science. He reads at a 2nd grade level but has a little trouble with the comprehension at that level. I am very proud of him. He also played soccer and will be starting swimming lessons next week!

As for me I have been keeping busy. I babysit kids 2 times a week and have been working on getting MOPS up and running! I am very excited about it!!!