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!

22 months- the bad and the ugly (March 2003)

I think I confused some people. I wanted to start from the beginning as my son is now 6 years 2 months old and we have come so far. I wanted to tell you how we got here. I mentioned in the first post that my son was 6 but if you missed that you may not realize that all this is in the past so I am adding the month and the year to the posts. I hope that clears up that I am talking about the past.

The good mentioned that M's first word came this month. That was amazing but it was mixed in with much confusion and much turmoil. We have not yet seen the Child Development Specialist, we do not yet have any idea what is going on. We only know it is SOMETHING. SOMETHING is wrong.

M had his MMR shot and chicken pox shot the day after his first birthday. He was also switched to whole milk that same day. I was not told to slowly wean, I didn't know anything about that. When my formula was out, I switched to milk. Our Ped said it was important to use whole milk so we started buying whole milk for M along with our 1% milk for us. That was at 12 months and now it is 10 months later. M is drinking copious amounts of milk. So much milk that I am watering it down. Almost a gallon every two days and that is with watering it down. I asked our dr about this and was only scolded for not feeding him enough food that he was drinking because he was hungry. I fed him till he was full (baby food) and he was still crying for milk. I found out much later that milk is alkaline going down but acidic in the gut.

M was having screaming fits at all times during the day for no apparent reason. We would be sitting and playing blocks and then he would throw himself back and wriggle and scream. The only thing that calmed him down was to get a bottle with his milk. This was no where near when he last ate or drank. We thought he was hungry/thirsty.

He was also waking in the middle of the night and screaming. Again, I asked our dr about this and was told it was night terrors and normal. I did not believe it. I had nightmares as a child and remember that when you saw mom you stopped crying and felt better. We would get to M and he would still be screaming. His eyes were open, he was awake and clawing at you. One minute he would be pushing you and the next he would claw at you to hold him. His face was bright red from the screaming. This would go on for 45 minutes to an hour. Milk and Baby Bach would be the only things that would calm him and get him to sleep.

We went no where without a bottle of milk and maybe two. NO WHERE. Not even a quick trip to the grocery store. Never knew when he would start screaming and we would need to give him some milk to calm him down.

This was a time of many questions and very little answers. We were able to get an appointment for May with a child development specialist. We were looking forward to getting some answers at this appointment as well as some direction on how to help our son.

22 months - happy post

We have been going to speech therapy for a few weeks now. It is going ok. M is not thrilled but he is complying. It is so strange to look back and remember how young he really was when all this started. How much he had to deal with at such a young age.

It is February. M has been silent except for some grunting, what I call squeaking, and crying. At this time, we did not know the cause for all the crying. This is the happy side of 22 months old.

M says his first word this month. We were in the car driving down to see my parents. We have just crested a big hill on a major highway here and we are listening to a CD of the Little People singing. We have heard this several times and during the song "If you are Happy and You Know It", M says "Hurray" at the appropriate time. HOLY CRAP I almost crashed the car. I cannot begin to tell you how excited I was to hear him not only say a word but say it because he was listening. We got a lot of mileage from that song. We changed the words and added new movements to keep his attention.

I am not surprised now that his first word was to a song. Like I said above, I knew he could hear because he was so interested in Baby Bach and Baby Mozart. He was dancing and wiggling. I could get him to grab a toy that made music.

The first of many happy words we have heard since then. The words have been hard to come by so we try to celebrate each one. Although I am still waiting for that big language celebration.

We got a lot of mileage from that song. We changed the words and added new movements.

Buy the book!

I am very excited to announce that the book is for sale. "Meet my Brother! A Sister's story about love and autism" is for sale from the publisher at Artful Media Group.

I hope you enjoy it.

Why I wrote this book

I wrote this book because I want my son to be accepted and liked for who his is not what he should be or how he should act. He does want to play with other kids. He just does not know what to do or how to approach. He plays nicely with his 3 yr old sister and can play board games, card games and video games. He is much better with taking turns. I am guessing that right now at 6, he is playing like a 3-4 year old. If you see him on the playground, you would not see it. He runs around, looks back if someone is chasing him, follows others up and down the slide and laughs along with others. Then try and talk to him. Ask him a question that requires a real answer. Then you can see it. Not glaring, but still there. We have come a long way, we have a long way to go.

If you see us on the playground, ask him to play. He will say "yes."

Introduction - 18, 19, 20 and 21 months

Welcome!

I will be sharing more about the book as well as how we are recovering our son from autism. Our son (M) turned 6 in May.

We noticed the few words he did have were gone by his 18 mo "well baby" appointment. We were sent home to wait and come back in a month. I was in a playgroup and I gave another boy a friendly instruction while we were cleaning up to hand me the blocks. I did not expect any response from him because I had done this with my son many times with no response. This boy however, DID respond. I remember it very clearly. He was not even looking at me when I said his name and asked him to please hand me the blocks. He looked at me and crawled over and brought me a block. That is when I knew there was a problem. That day at the playgroup was the day I got scared. I was already prepared for no good news when I went back on January 3, 2003 for that appointment. I am glad I did not have to fight for that speech and hearing referal that started this ball rolling.

I did not have to wait long for the appointments but at the time, waiting that month was agony. We had both on the same day in February. Speech first and hearing second. M would not get off my lap. He did enough for an evaluation. I think his worst score was 3 mo range and he averaged out about 6 mo. At this time he was 21 months old. We could not even get a hearing test that day. First there was no way he was letting that lady put anything near his ear and the little examination she did get told her he had excessive wax in his ear. I knew in my heart he could hear fine. Although he did not respond to his name he could hear that Baby Bach Baby Einstein video from the other side of the house. I am so thankful we had that speech test first. This ST told us about Early Intervention, to call a Child Development Specialist and to get M checked by an ENT. This hospital also did all the insurance checking for you. We were at a speech therapy session within 3 weeks.