The First 100 days

So, this whole diagnosis thing is really overwhelming.  Luckily, I've been spending a lot of time with the hubby and my son. I feel bad in so many ways that we didn't get him evaluated sooner. We missed out on a program called "babies can't wait". Three is the cut off. My son is three. Now what? Trying to get answers. I know we can get therapists to come to his preschool, but not sure how it all works yet. I wonder if three year olds get an IEP (individualized education program)? So much to think about.

I don't think anything could have prepared me for this, though.
I had noticed as early has 18 months that my son was not socializing as he should have. We had a play date and he barely noticed my friend's son. Fast forward to his second birthday, and the little boy my other friends brought over kept saying HI to my son and trying to play with him, but my son would barely acknowledge him.

The hubby and I thought it was our faults. We are pretty introverted, believe it or not. I'm a tested myers-briggs ISTJ. Socializing takes a lot of energy out of me and though I am blessed with my wonderful friends from all of the places I have lived, I like that with the internet I can let them know I love them even though I don't get to see them much. This is mostly geographical in nature, but also, when we had our son back in Ohio, we did not have many visitors, and all of the socializing we did...we had to bring our son along. Not always cool with our friends, but we had no family and had a hell of a time trying to find a good babysitter.

Our son was not in daycare til we moved to Atlanta. In Cleveland, and sometimes in Atlanta, I  worked full time 40 hours + a week, night shift (then eventually 36 when my boss FINALLY let me go to three 12 hour shifts on night shift. I'm an RN, it's exhausting work. I felt horrible because when I got home, I was so tired I could barely talk. I had to stay up for over 36 hours sometimes. It went like this...
1. stay up all day with baby
2. go to work for 12 hours and the hubby would watch the baby at night
3. come home and stay up all day (nap when baby napped)
4. go back to work that night for 12 hours...
you get the idea.
My schedule was erratic, too. I never had a routine, which meant the baby didn't, either.

I breast fed him, I wore him in a carrier, I had him sleep next to me or in the bassinet next to me, etc.

A punk rock granola mommy, if you will. He had Ramones lullabies, and went to acoustic punk band rehearsals with me.

But the thing is, I felt sure that it was the tired mom who didn't talk much to her baby that may have started this whole regression thing, and that it got worse when I lost my new job in Atlanta when he was 22 months old due to ILLNESS I got from having put him in daycare. And I couldn't find anything quickly enough to keep the bills paid. I took a travel job and was only able to see my husband and son every few weeks. My heart was so broken. Luckily, where I was...Baltimore...was an easy flight to ATL and I had friends and family up there and a great place to stay.

I noticed some regression when my husband took my son out of the expensive but amazing daycare we had him in. Thought this was related to stress from all of the changes. Maybe, but again, the psychologist informed me that what happened to my son was going to happen, stability or not.

I suppose I feel extremely lucky that I established the warm bond we have early on. This has allowed my son to really trust me and know that a hug and kiss is always readily available from mommy.

Autism is a spectrum disorder, and my son is most definitely a DSM criteria matching one, but mostly because he has trouble with communication and socialization. He is so very smart. We encourage any activity he shows interest in that is productive and safe and fun. Right now, he LOVES his map of the USA puzzle. He puts it together without any help. He knows the names of several states. I'm so impressed. I love that he loves it.
He loves counting, the alphabet, drawing, dancing and singing, and building trains and castles and cars out of shape blocks. Oh, and he LOVES his collection of balls. He has soccer, basketballs, etc. He loves music and drumming very much. The other day I played bass and sang and he drummed and sang "monkey gone to heaven" by the pixies. (he just loves them!) the hubby videoed it. Free music therapy.



He's getting better at telling us if he wants something to drink or eat, but he still won't tell us if his diaper is wet or messy. Toilet training is going to take longer than we thought it was. And let me tell ya...it's been slow. He's not afraid of the toilet anymore, though!
However, we got a packet from Autism Speaks (they are so nice, thank goodness they exist) and I think we are on track for the most part. The packet is called the first 100 days and it sorta walks you through what you need to do.

Our son's dx psychologist states that he needs 25 hours of intensive therapy a week. We're still waiting for the detailed report. The evaluation will be typed and really detailed. Like, longer than a term paper. They take 4-6 weeks to get, usually, because it will outline recommendations for therapy and list his strengths and areas of needed improvement. Til then, we just gotta do what we can to keep stability and normalcy for our sweet and loving son. We are reading as much as we can about how we can start the therapies at home, like ABA, and floor time. Any suggestions from parents with autistic toddlers are welcome.