Introduction – Heather

Before autism entered our lives on August 19th 2008, I knew of one family that had 2 boys diagnosed with autism. Now I am, in fact, one of those people with 2 boys on the autism spectrum. Hunter, my eldest son, is a bright, enthusiastic 6 1/2 little boy. Never would I imagined he was on the autism spectrum, however, that painful word was there on August 19th 2008. I knew before I entered the room , of course, but it was still so painful.

My little boy was so happy most of the time and he loved people and giving hugs and was my snuggle buddy. Way before his diagnosis of PDD/NOS, my husband felt that autism was a possibility. I just couldn’t see it. However, after our second son Tristan came, it was very apparent that it was a very high probability. So many meltdowns that were so alarming, we often considered going to the emergency room. I still feel that pain on a daily basis.

Then we started the battle for services in West Virginia with a 6 month old Tristan and a newly diagnosed child with autism, we quickly learned that there was not much to offer because my son was now 4 years old. However, we enrolled him in a local blended Prek and he was doing well soon after. The time from then until Octobor 28th 2009 is a blur of “survival mode” as we like to call it.

In that time frame, we had plenty of sensory issues, poor eating, tantrums, tears, frustrations and sadness and joys. We had one family that helped us find some things to help our oldest son Hunter. We didn’t qualify for SSi or title 19 waiver program in West Virginia. Although we still continue to apply for Waiver services, I don’t believe he will ever be qualified. Help from that one loving family, made our lives so much better. Going blindly into autism, which is pretty much what you do in this state, is down right frightening. Our prek teacher has become my hero. Along with a wonderful Defeat Autism Now doctor and persistance, our Hunter will be transitioning to a regular kindergarten next year.

On to Tristan, the little man, oh he was always a handful. Once we got our Hunter diagnosed, we were watching like a hawk to see any delays in him. Initially, we were fine with developmental milestones, then there was lack of language. I noticed the flapping at 12 months and got a birth to three evaluation. The social issues were apparent all along with Tristan. He never liked to travel to grandma’s or anywhere. The carseat was torture, in a sensory aspect. He lived on milk and lays potato chips from 12-18 months. Projectile vomitting started and lasted during that time frame also. We were scared and had every test run on him to rule out everything. All the tests were normal and then we knew what we were dealing with. SENSORY issues, our worst enemy.

Not long after Hunter’s painful diagnosis, we were faced with Tristan as well. We knew it but it still was like “taking a bullet”. We hadn’t even put all the pain away from Hunter’s diagnosis and bam, here it was again. I would liked to have ran away and put my head in the sand, but I didn’t. To tell you the truth, I feel that way often, but I am no quitter. I have been angry, frustrated, cried and contemplated giving up on this system we have. Then I decided it was time to do something.

So I decided, in order to change things, I needed to help other people with children with autism. The group is a few families but we have much to accomplish with out children, community and the state laws. I have many friends that love and support us so we will fight and have hope for more great things for our kids. Children DESERVE BETTER and they will GET BETTER with the APPROPRIATE services not just the scant amount the state and insurance companies can bare to spare them. My babies and your babies will have hope.

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