Tuesday, August 28, 2012

Hello! Time to get started

I have been thinking about starting a blog for a while now, but so far that's as far as I've gotten :) So today I am making myself sit down and finally get started. The purpose behind this blog is to give myself a place to organize my thoughts, feelings, and experiences, and to share our journey with others. I am by no stretch of the imagination a writer, but I am going to give it this a shot anyway. I am going to start by back tracking a bit, and catching everyone up on how we got to where we are now. I have been reading a lot of blogs lately and they have been helpful. I am hoping our story can help others as well.

October 9, 2010

Our beautiful boy Jakob entered the world. He was 2.5 weeks early - I guess it was his first way of letting us know that things were going to be done on his terms, and following his time schedule. :)
Jake was pretty much what I would call an "easy" baby. He has always had a great temperament and has generally been a happy guy since the beginning. He starting sleeping through the night by about 6 weeks, and aside from liking to be a bit of an early riser, never really gave us any problems in the sleep department.
Welcome little buddy :)


Jakob continues to grow and thrive, hitting most of his developmental milestones on time (or a bit on the later side of on-time) He sat and rolled over when expected, babbled, cooed and flirted away with his contagious smile. He always seemed social to me - I never noticed a lack of eye contact, and he seemed to enjoy sharing smiles and loved to be cuddled. We went on vacation with family when he was 8 months old and he learned to clap and wave while we were there, and enjoyed playing back and forth games such as shaking his head "no-no" and playing Row, row row your boat etc. Around 9 months he started a his own version of a one-armed army crawl, and was crawling on all fours by 10 months old. Pulling up and cruising wasn't far behind. He took his time with walking independently, finally taking his first steps at 14.5 months, just a few days shy of the new year. One thing I sometimes noticed, and my mother often pointed out, is that he didn't always seem to respond to his name being called. I told myself that he was always just too occupied with whatever he was going at the time. He loved playing with toys. His favorites were blocks, nesting cups, and his ring stacker. He also enjoyed watching his beloved Bubble Guppies and Little Einsteins, especially the parts with music. At first I wondered if his lack of responding to his name had to do with a hearing issue. But when he heard the theme music from one of his shows coming from another room he would come running (or crawling) from the other room to watch it. When he is excited by one of his shows or a song he does what we call the "happy dance". When laying on his tummy he bounces arms and legs up and down. While sitting or standing his little hands flap away as his knees bounce  in delight. We always saw this as a cute little quirk he had and didn't think anything of it. I join a local mom's group in August and we start going to a lot of playdates so Jake has a chance to be around other kid's and I can be around some adults :) He did a lot of babbling, and I remember commenting that I thought he'd be an early talker. Not so much ;)
playing with trains at local play room
So proud of his block tower

January/February 2012

We have Jakob's 15 month well check. The NP asks how many words he has and I tell her none yet. He would say "dadadada" but I didn't think there was any meaning to it. (Though he did think it was hilarious to say it in response to me asking him to say "mama" LOL) Is he responding to his name - "when he feels like it". I was happy to be able to tell her he finally started walking. She also asks some more milestone questions such as is he drinking from a sippy, can he self feed, stack blocks, etc all of which I can answer "yes" to. She says that would expect him to have 3-5 words by now, and 10-15 by his next check up at 18 months. She tells me that we will discuss calling Early Intervention if he isn't saying more (or anything) by then. My mother and MIL, and everyone else, tell me "boys talk later" "Einstein didn't talk till he was 4" "So and so's grandchild didn't say anything till 3 then started spouting out sentences. Now the kid won't shut up" That's all fine and good, but this is MY child and I want to know what's going on with him and not so concerned with others.
We continue to go to a lot of playdates. Many of the other children are close in age to Jakob, and I have been watching them grow together. Most of the other children are beginning to talk, and a few can practically hold a conversation. These playdates often start at 10 and Jake was typically napping around 11/11:30 at this age. We usually only last about 30min at these playdates before Jake has a bit of a meltdown. I decide I don't want to wait until his 18 month well visit to call EI. I'd rather get the ball rolling early as I often hear stories of wait lists etc. and don't want to have to wait until he's almost 2 to start getting help if it's needed.

March 2012

Jake has his first EI evaluation. A case worker, speech pathologist, and a special ed teacher were all supposed to come out to observe him. Jake woke that morning in rare form - he was getting a new tooth and wasn't his typically  happy self. The speech pathologist apparently didn't get the memo and didn't show. The case worker and teacher asked a few questions and the teacher tried to do a few activities with Jakob, but he wasn't very into it. They all came back the next day with the speech therapist joining them this time. They said he showed some delays and they would try to get him some services. He needed to show a significant delay in 1 area, or a moderate delay in more than one area. The therapists said that their write up would likely make him sound worse of than he was, but that was in an effort to get him services. It was decided that  he would begin receiving 45min of ST and 45min with a SEIT (special education itinerant teacher)1X per week. No one brought  up anything other than a speech delay.

April 2012

  Jakob begins receiving his EI services. His teachers are very nice and friendly, and bring a bag of toys along to play with. He quickly becomes comfortable with them and enjoys peeking in their bag to see what they have. Getting him to sit and do an activity wasn't always so easy. After his initial intro to a new toy he would want to wander away and do his own thing. His ST was good at getting him back and trying to keep him on task, and always made him finish whatever she was trying to get him to do. He would often protest and sometimes things needed to be completed hand over hand. His SEIT wasn't as strict, and I spend a lot of time bringing him back to the activity at hand.
    Around this time some things begin to stand out to me. He enjoyed looking at books and playing with toys, but as soon as myself or one of his teachers tried to join in he would get up and walk away. He still wasn't responding to his name with any consistency. We would go to playdates and I would notice the other kids playing with all of the toys appropriately, bringing things to show their moms, and keeping busy with the things at hand. I spent a lot of time chasing Jake and bringing him back to the room everyone else was in. He was happy to wander about, occasionally picking up a toy or 2 to play with briefly. He never brought me a toy or object to show, or brought me anything that he needed assistance with. He also never pointed to anything. At home when we were in the basement playroom he would wander about from toy to toy, but never really spent much time with any one thing.  He previously would spend a long time playing with blocks, stacking cups, etc, but now these remained mostly untouched. We first chalked it up to him beginning to walk. It seemed as if once he was mobile he lost interest in sitting still to play with something. By this point though he had been walking for 4 months, so I expected to see some of the playing return. He had stopped playing with his shape sorter as much as he had in the past also. We had gotten him a train table because he used to love playing with the one at a local play room. Now the trains sat untouched.
    In the back of my mind his 18 month appointment was nagging at me. I knew that the NP was going to ask many (and more) of the questions she had asked at his 15 month appointment. I also knew that most of the answers hadn't changed. I began researching Autism. and was a bit scared by what I found. I read about the red flags, and Jakob was displaying many of them. I took the M-CHAT online (www.m-chat.org) and he came up as having a risk for Autism. I tried mentioning this to my husband one day, but he made a face and kind of shrugged it off. He obviously wasn't ready to hear/think about it. He also didn't see the necessity to call EI when I did. Again, everyone was always telling us stories about kids that talked late, and he didn't see any reason for concern. Luckily when the day of his appointment came he was home from work and was able to go with us. As suspected she asked how many words he was saying - again the answer was "none" Also no to if he was answering to his name. Then she said "but he's pointing at things and bringing you toys to play with right?" Again, "No" She continued to go through her checklist, which I think was a modified version of the M-Chat. She then brought up the "A" word, saying that he was showing some red flags. As I said, I was fully expecting this, but it definitely hit my husband by surprise.  She recommended that I make an appointment to have Jake meet with one of their pediatric psychologists for further screening. I called when we got home and Jake and I went back to days later. She went over the M-Chat and a few other checklists with me, and agreed that he was showing several red flags and that further evaluation was recommended. I'll write more about the quest for the evaluation in my next post.

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