Hard

Forgive me for going out of order for a minute. Especially when I left you hanging for so long after that last post. Autism has been on TV and in the news a lot in the last month. I have been watching and it brings a lot back. Autism is everyday for us. Some days it is louder and more consuming that others.

It was hard hearing my son had a developmental delay. It was hard hearing he had an autism spectrum disorder. It was even harder to read, and I read it first on the internet, that a cause was suspected BEFORE my son was even born. The "one size fits all" approach had already been called to question. That was hard to read. VERY HARD. This did not have to happen to my son. It is hard, heart breaking really, to know that it is still happening. Mothers are still going in for well child visit and being mis-informed about the vaccines that their child is receiving. More children will be diagnosed with autism. It is hard to go on the message boards and see posts that say "newly diagnosed", "New here, need help". That is hard. More children. More families. More lives being turned upside down by autism. Yes, it is still upsetting. Yes, I am still angry. Yes, I am still continuing to heal my son.

Still here!

Sorry about that long absence. School was out, we went on vacation, Back to school was more difficult than I thought. Acck! I think our routine is back and I can get back in the groove.

My friend Julie has given me an award dispite my absence. Thank you!



I hope you all have not given up on me. I would still like to share our story.

Good news is that the book is getting out to people and that they are all enjoying it. Very happy to hear that. If you have the book and want to share how it has affected you, please do. I would love to hear from you.

June/July/August 2003 (25/26/27 months old)

I still don't really know what is "wrong" with my son. Early intervention has finished their evaluations and we have two good people coming in to help M for 2 hours a week. Looking back I think he needed MUCH more that these 2 hours. I also wonder why no one from EI mentioned autism.

His developmental specialist from June did not click with M. He would do nothing for her and just as I was about to call his coordinator, she called me and suggested a replacement. That replacement did not come until August. It was a man. At first I was skeptical about a guy but he clicked with M almost on sight. M did more for him than for anyone else.

Everyone is talking about development and being behind but again, no mention of autism. Not really sure why.

We don't go anywhere without a bottle of milk. I mean NO WHERE. Not even for a quick run to the Shop Rite. Tried that once and ended up buying a bottle and filling it with milk right in the store. I was thinking all this was behavioral and I did not want M learning that pitch a hissy fit = leaving the store.

I am still reading the internet about development delays and this is leading me to autism sites. The more I read, the more I know what I don't want to know. Not all the pieces but many fit with M having some form of autism.

Not responding to his name
Not looking us in the eye
No pretend play
Not playing with toys correctly
Not pointing

What did not fit:
He wanted to be with us
He would engage with us if we prompted it

Next month, September 2003, M gets the best gift of all

My Intro to Autism

I play with the computer when the kids go to bed. Well, it is still "kid" at this time - May 2003.

I google "Global Developmental Delay". I want to learn about what more I can do for my son. I come up with many pages that refer to autism. I keep looking.

I am sure it won't be a surprise when I say that in May of 2003, I know very little about autism. I sa RainMan and the little I find online talks about isolated kids who bang their heads and want to be alone and scream when they are touched. That was my internal picture of a boy with autism. One who sits alone in a corner huddled and rocking. This internal picture did not match with the happy boy that I knew at home.

Like I said, at this time, I was dismissing anything that mentioned autism. Autism scared me and I did not want anything to do with it but I kept reading. I was not sleeping well and would go to the computer in the middle of the night when I could not sleep. I am an action person and I needed to do something.

I was getting comfort from new ideas from speech delay websites and doing the lessons from M's speech therapist that we are seeing each week.

M was also approved for a total of 2 hrs of early intervention. He has OT for 30 mins once a week and a developmental intervention with two 45 minute sessions. I feel better that at least something is happening.

Next is how M felt about all these new people coming into our house.

2 years old - May 2003

We had a nice birthday party. M would not touch the cake and he could not blow out the candles. We had to nicely force him near the cake to take photos. Most kids ram their hands into the cake and can't wait to touch the frosting, not M.

We are finally going to the Child Development Center for our answers. I was looking forward to this appointment and had lots of notes. I had filled out a 20 page questionnaire and had already sent it back. I brought detailed notes of milestones hit and behaviors.

We arrived and they took our photo. We waited a bit and then we saw the doctor. I am not sure if she reviewed our file prior to the visit as she asked us many of the same questions. Most of the visit was our answering questions. My husband tried to keep M happy while I answered. M wanted nothing to do with this place. The doctor then tried to weigh and measure M and he wanted nothing to do with her touching him. She also wanted a head measurement and he fought that. I really wanted that as his regular Ped did not check his head so we held him for it. His head measured in normal range. His height and weight were in normal range.

Now that M was upset, she tried to get him to do some things for her. At this point, I wish she would have told me she was going to do some tests like this as I would have said to do this first before the height and measurement checks. We were in a very small room.

M sat on my lap and did ok. There were not many tests at this visit. I am guessing that the better a child does, the more they go on with the tests. She did blocks, putting a chain in a cup, feeding a doll and a few others. He did not feed the doll. He did not even pick up the spoon.

I was looking for answers and really did not get any. I actually got more questions. I was told M had Global Developmental Delay. The word autism was never mentioned. The possibility that he may develop autism was never mentioned. ABA was never mentioned.

I told the doctor that early intervention was starting this month for 2 hours. I was never told this was not adequate for his delays. I was told to keep the speech therapy (we were going once a week) and to get some more occupational therapy if I could. That's it. That was the wrap up of the appointment. I was not told of the severity of what was happening. I was told to return in 6 months for a follow up.

I did not care for the doctor. I thought she should have reviewed our file before we arrived. I did not like how she talked over my son and how she related to him when they were doing the tests. I knew how long it was for appointments so I was happy to have some sort of doctor looking at him and I made that follow up appointment for November before I left.

I googled "Global Developmental Delay" as soon as I got home.

23 Months - April 2003

I love spring and Easter. The promise of new life after the long cold winter. It is my favorite time of year. We still don't know why M is not talking. Like I said he is interactive but not talking. We did not know at this time that he is not as interactive as he should be for his age.

He loved music but now was getting stuck on the music from some toys and this one was very bad. He would spin the wheel and "dance" in a circle. AKA spinning. He would do this over and over. Even I knew there was something wrong with this. It was hard to stop him.

More older pictures. I hope you won't be surprised that I think my son is the most gorgeous boy on the planet! He was precious from day 1.





This last one is from August 2001.

Next post is May 2003, M turns 2 and we finally get to our meeting with the Child Development Specialist.

I was locked out for a bit

For some reason, I was locked out of the blog for several days. ???

I have been thinking about how it was back then when M was this age. We waited so long for a baby and we were so happy to have M with us. We were also new parents and did not know what to expect. I would still say that he was a good baby. He was cuddly, he wanted to be with us and he did play with us.

I had a parenting book, A "What to expect" book and was following that month to month until about month 11 or 12 because I was making myself nuts. I have a journal and M was hitting all those early milestones.

Tomorrow. Month 24 and photos!