Sunday, February 20, 2011

Franklin and Autism

I waited my entire life for this baby. The minute he was born he took my breath away. I was hooked the second we locked eyes.
I knew at that moment I would walk through fire for him.
He was a joy as a newborn. He rarely cried he took to breastfeeding like a champ He was not the best sleeper at night but I really didn’t mind that much.
He began to hit his developmental milestones pretty much on track or at least what I thought was on track. Babbling at 3 – 4 months, rolling over, sitting up, crawling, standing, cruising, walking, all by his 1st birthday.
When he was 4 – 5 months old he had an aversion to certain loud noises and he would either cry or open and close his hands very fast. We thought it was cute.
He was cuddly and affectionate with David and I . As he got a little older 8 – 9 months I went to a couple of different play groups and began to notice subtle differences between Franklin and other kids. He wasn’t pointing for things, he wasn’t clapping, he wasn’t waving “bye-bye”.
He would not engage other kids, he wouldn’t respond to their play or participate in parallel play, he would play alone and really not even notice that other kids were present.
I had read a book when I was pregnant with him about a child that was diagnosed with Autism after a seizure. I remember some of the characteristics were, and the first time Franklin flapped his arms, my heart sank. I did think it might have been a fluke because he was so cuddly and affectionate with me and he engaged with me and would play with me. His social skills with other people were non existent.
The more I went to parks and the more he was around other kids his age the more I noticed how many difference and deficits he had compared to other babies his age.
I couldn’t deny that there was something different and delayed about how he was developing and behaving.
At 16 months he seemed to not be talking or making any progress to start talking there were no words, sounds or approximations. It also seem like there was nothing I could do to get through to teach him to do anything. The helplessness was getting palpable.
I expressed my concerns to some family members and they referred me to an Occupational Therapist that they had worked when a child of theirs had a head injury years earlier. I went to see this therapist with Franklin and this man observed him for an hour and told me that Franklin had issues processing sensory input. Basically his brain was wired incorrectly but by massaging Franklins back and hands and chanting to him I could re-route the messages to the proper area of the brain. He tried to sell me some MonAvie for him to drink. He also told me not to let anyone tell me that Franklin had Autism because that was a diagnosis that was thrown on children to frequently because doctors and therapists were too lazy.
WOW! I left there LESS than relieved and I was sure he was a nut job and was shocked that people I respected thought that this guy was reputable.
As a new mom I was at a loss with what to do. I finally went to my pediatrician and told him all of my concerns about Franklin. I took a favorite Elmo toy with us to that appointment so that the doctor could see some of Franklins s behaviors and actions playing. My Pediatrician observed and ordered an evaluation through the Regional Center for a speech delay.
The Regional Center came to our home and did an intake assessment to see if Franklin presented enough of a delay to qualify for an official evaluation. Which he did.
We were then sent to a place called Newport Speech and Language. This evaluation was a disaster. Two therapists came in a conference room as Franklin was playing with the mini-blinds and climbing on furniture. They were irritated the fact that I couldn’t get him to comply with the requests they were making of him. They in my humble opinion were unfit to be therapists to toddlers.
I had also heard that because kids can’t talk sometimes it is because they can not hear, so we went for hearing tests, which he would not comply with and he had to have a sedated hearing test which he passed. I knew as a mom that he could hear because if his favorite show came on the TV in another room he would hear it and come running. It is something that I find amusing with the medical community that they rarely listen – truly listen – to what the parents say about their child. They could save a lot of time and money.
It was obvious that Franklin had a lot of developmental delays in addition to a “speech” delay. But after their recommendation of 1 hour a week of speech therapy we began to attend Rainbow Kids 1 time a week for an hour. After a few months of going there with zero progress the Speech Pathologist there said that he was making a recommendation for an emergency evaluation. Franklin had a lot more going on than “not talking”.
This therapist took a couple of hours interviewing me and observing and assessing Franklin and his abilities. I will always thank God for this angel because he was the one that got Franklin the help that he needed.
After his report was sent to Regional Center there was an order for 12 hours a week of in home ABA therapy. After the supervisor spent a couple of days in our home they ordered 20 hours a week of therapy for my (at the time) 2-year-old.
I had decided to go to a Neurologist to see if there was some stone that I was leaving unturned. Because even after a few months of intense therapy in our home very little progress was being made with Franklin and I wanted to see if there was something else we could do to help him. With this visit came what I already knew in my heart – the diagnosis of Autism. My heart cracked a little hearing the words from someone else.
Even though intellectually I knew he was the same funny sweet angel that we had always known. I was hurt that he was going to have such challenges to overcome in his childhood. This is a battle I have to fight for him but he lives on the battleground I just drive the tank that helps him off of the frontlines of the fight of his life.
The progress in some areas is quick and a lot of areas slow. He is still non-verbal but has his way of communicating. He has a lot more good days than bad days. His engagement is getting better. He is tolerant of his baby brother, he will engage and play with us and some of the Aides at his school.
Both of my children are gifts from God, and I think that Jackson our 2-year-old is Franklin’s biggest tool in therapy. Jackson pushes Franklin and is making the progress happen a lot faster.
If you are new to the Autism gig, it is a treacherous road and there is a lot of “Chatter” out there. Take what you need and leave the rest. I have been yelled at by women because I have not done things they way they say “Cured” their kids. Find yourself a group of moms that are like-minded and feed off of each other. Don’t get sucked in by celebrity do what works for your kid and your family. Good luck and God Bless.


2 comments:

  1. Hugs my friend! I have been there, our Pediatrician is the one who kept telling me, "its ok, kids dont always talk at 2!" and "She will talk when she is ready!" I wish Doctors would listen to our concerns.

    Our journey is life is hard but its worthwhiled! She gives me new meaning to life.

    Congrats on being a double survivor!

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  2. Speaking as mom of a now, 9 year old boy with autism...your story brings back alot of memories. His little sister has been his biggest therapy too.
    Dominic was non-verbal and attended Rainbow kids at their preschool and we had OT as well.
    Just wanted to share that he is completely verbal now and in a regular 3rd grade classroom. We aren't without our symptoms - but he has made GREAT strides.
    He's my awesome dude - and I pray that your son continues down the road to improvement

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