Raising early intervention and autism awareness through our amazing journey

Posts tagged ‘Toddlers with autism’

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Autism diagnosis- now what?

We were given a huge folder with too much information to take in. In fact, we didn’t go through the folder until that evening.  We wanted to dissect it together to support one another.  We both took turns crying, not intentionally, but I think one of us would cry and then it would set the other off.  There was SO much information; schools for autism, Medicaid waiver paper work, types of therapy, diets, a “how to tell friends, family, and siblings” booklet, how siblings can help booklet, support groups, insurance, websites for information about autism.. anything and everything was in there.  We didn’t even go through all of it that night.
As Byron was still grieving, I was not sleeping and researching everything I could.  Even though I have worked with children of special needs before, I had no experience with toddlers of special needs, not to mention that it is completely different when it’s your child.  I have some good friends that work in the autism field and they were amazingly supportive, giving me resources, book recommendations, and information on therapy so that I could start working with him right away.  To be honest, I think I grieved for one evening, and then I dove into printing pictures for him for Picture Exchange Communication System (PECS), so that I could start communicating with him right away.  Friends of mine in the autism field sent me professional information so I could start therapy with him, and I started that same day.  I haven’t stopped working with him since.  We work everyday all day.  Even our “playtime” is work time (he doesn’t know that though).
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 I guess I look at it as if I have 2 choices.  I am going to either spend a lot of time grieving over the child that I once had, or work extremely hard to get as much of that child back.  I have chosen to work for his best interest.  If he were to make no improvement at all  I would love him just the same, but he is improving.  He is getting better and better everyday.
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It started after his 1st birthday

Twelve years ago, a friend of mine was telling me a story about her daughter’s journey with autism.  She explained that her daughter was just like any typical toddler; running, playing, laughing, and talking alongside her twin sister.  Then one day her daughter stopped talking.  It was such a heartbreaking story, yet she told it in a light manner and seemed to be comfortable and accepting of her daughter’s autism.  I was amazed by her strength and remember thinking how difficult it has to be.  Her journey stuck with me and I have thought about their family ever since.  I never thought that I would be walking that same path with my son, twelve years later.

Our son was born at 36 weeks weighing 8lb 5oz.  Technically he was a preemie, but from the looks of things, he was anything but!  He was put into the regular nursery and didn’t require any special care at all.  He started out the exact same as his two older sisters; healthy, cooing, laughing, happy and lovable.  Our son crawled around 7 months, and was running at 13 months.  Things were very typical and his well visits were great so there was no concern at all for any problems.

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He had 6 words: mama, dada, up, down, yes, okay.  It was a really cute mix of words.  He was interactive.  He loved laughing and playing with his older sisters the most!  When we would call his name, he would answer.  When we would tell him “no”, usually he would stop doing what he wasn’t supposed to be doing..usually.  And then around 15 months, things started to change.

At 15 months he stopped trying to get our attention.  He stopped interacting.  He stopped using eye contact, and he completely stopped talking.  I remember telling my husband that it was probably a phase, or that maybe he was just “being a boy”.  Then the climbing began.  He climbed on the couch, the chairs, and then the tables.  When I would tell him “no” or ask him to get down, it was like it didn’t even register.

One evening he was standing on the kitchen chair and I wasn’t fast enough to grab him.  He fell, hit his head, and off to KidMed we went.  The exam was fine, no concussion or head trauma, but the doctor told us to make sure to get his attention over the next few days to ensure all was okay.  I really though that he was just a toddler boy that wanted to do his own thing and that surely this phase would end soon.  Things weren’t okay.  I had a feeling that it wasn’t caused by the fall, but there was surely something going on.  He didn’t respond to his name at all.  I would yell his name and clap right next to his ear..nothing.  After a visit to his pediatrician the next day, we were referred to a Developmental and Special Needs pediatrician.  I had a gut feeling that this might be autism, but it just couldn’t be.  Not my son?!

He had extensive testing for almost 2 hours. My husband and I watched as our sweet little man wasn’t doing anything the doctor asked.  “Where’s your head?”..nothing.  “Point to the dog”..nothing.  “Where is mommy?  Where is daddy?”..nothing.  These were things that he could do a few months ago, and now it was all gone?!  It was heartbreaking.  Both of us sat “poker faced” with tears rolling down our cheeks.  And then “that word” was said that changed everything.  Autism.

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