Sunday, September 30, 2012

Under the weather

J hasn't been feeling 100% for the past few days. As I mentioned on his first day of preschool he woke on Thursday with the beginnings of a cold. Today is Sunday, and it is still lingering. Friday morning his made it through OT early in the morning, but you could tell he was hovering between extremes of being very happy and completely miserable. JT arrived at 9 for his ABA session. As I watched from the video monitor I could see that they were having a rough time. J wasn't interested in doing any work, and was doing a lot of whining and crying. After half an hour it was obvious that we weren't going to accomplish much. JT left and I let J relax and watch some Little Einsteins. I also cancelled his ST that afternoon. Instead I took him for a ride and he took a nap. I figured he needed the rest more than fighting against any therapy for a day. We laid low this weekend, and J actually took a 3 hour nap in his crib today(thank goodness as he woke before 5:30 this morning!). That is a sure sign he's not feeling well! I am hoping that he wakes feeling more himself tomorrow.
    This is one of the times that I find his not being able to communicate with us the most difficult. I wish more than anything that he could tell us what is wrong. I hate that he has no way of telling us that something hurts or is bothering him. He can't tell us if he is upset or scared, and he has no real way of expressing his wants or needs right now. He often takes our hands and brings us to what he wants, but sometimes we aren't sure just what he is asking for. Right now he doesn't get too frustrated, but I don't expect that to last for too much longer. I am hoping that we will be able to help him communicate more effectively with us soon, be it with language, signing, or PECS. I want him to be comfortable and happy, and for him to feel as if we are here for him and understand him. I love my guy more than anything, and will do all I can to make his life and easy and fulfilling as I can.

Thursday, September 27, 2012

First day

Today was Jake's first day of going to preschool without me. It was only for 45 min as they are trying to ease the kids into it. Of course he woke this morning with a cold and not feeling well. He was sneezing and had a runny nose, which isn't a great combination for a kid that doesn't like having his nose wiped. He seemed pretty tired, and wasn't his usual happy self. We met JT outside the school and went in together. I could tell from the moment I took him out of the car that he want going to have the best day. He usually greets me with a big smile when I open the car door, but today he gave a little whine. He was clingy from the moment we entered the classroom. When we were there last week for the meet and greet he was eager to explore the room and check it the toys. Today he had no interest in anything but sitting with me. I said a quick goodbye and left him with JT and his other teachers.
    When I went to pick him up the director met us at the door and told us about their day. They did some free play and a little art  project, then a short circle time. At least the other kids did. Apparently J cried most of the time and stayed attached to JT. I know that his not feeling well played a big part in the rough day he had. I didn't expect him to be able to participate in everything, but I didn't think he would be upset the entire time. I am hoping his little cold will be gone by next week and that he will have a better time at school. He has spent time without me at the gym child care room and was fine after the first couple of times, so I am confident he well do well here also.
    I entered the classroom with another mom. JT was holding J and he was whimpering a bit, looking sad. It broke my heart a bit to see him that way. At the same time another little boy, who is a bit younger than J, came running over to his mom with his art project proudly in his hands, eager to show her. The other children were sitting at a table playing with toys. This tugged at my heartbit too. Will J be able to do his art projects one day? Will he ever have that desire to share his accomplishments with me? Will he sit at the table and play with the other kids? There are so many unanswered questions swirling through my head, and I need to make sure I don't become consumed by them. Today he came running to me for a hug, and we had some great cuddles. I find comfort in his affection, and that feeling of love from him gets me through the tough times. Yes there are many unknowns, but for now I will focus on the here and now, and relish in these precious moments with my sweet boy.

Monday, September 24, 2012

The waiting game

     Last week we had yet another evaluation. This one was at the Autism Clinic at our local children's hospital. I made the appointment back in April after we first started suspecting that Jake was on the spectrum. Since I wasn't thrilled with the thought of waiting almost 6 months for an evaluation, we had gone to 2 others (which I wrote about here and here), but I didn't feel that either evaluation was very thorough. As I've said before, I am not looking for a different diagnosis, but I would like a more in-depth eval and for someone to give me some more insight as to what is going on with Jake, and what they feel will help him the most.
    I was hoping that this appointment was going to be different, and that we'd walk away with some more insight. Seeing that it is an Autism clinic and that all they do is evaluations. I expected that we would go into a room with various toys/things for Jake to explore and that the doctors would observe how Jake interacted with the environment and with myself, and then they would come in and try to interact with him as well. Unfortunately this was not the case. This evaluation looked much like the others. It took place in a regular exam room, pretty much identical to a pediatrician's exam room. If your child is anything like mine, the doctor's office isn't exactly the his favorite place. It was obvious from the minute we entered that J wasn't very comfortable, and that the doctors weren't going to get a very good picture of what he is typically like. There really wasn't anything welcoming or inviting about the room, and the only toy was a lone truck. We saw a total of 3 doctors - a developmental pediatrician, a child neurologist, and child psychologist. It was pretty much the same as the evaluation we had at the developmental clinic back in May. Each doctor came in, asked me a bunch of questions, then sent in the next. Only one of them really tried to engage J or to do any activities with him, and even that was minimal. Afterwards I was told we would be contacted to set up an appointment to go over the results once the doctors met to go over everything, but that it could be a month or more.
    About a week later I received a referral for genetic testing. It said that once the clinic received the results they would make the appointment to go over the evaluation. We weren't given any sort of preliminary diagnosis or information. (As with the eval at the dev. clinic I didn't tell anyone about the PDD-NOS diagnosis in an effort to get an unbiased opinion.) I called the lab that does the genetic testing the next day. They don't have an appointment until December 17th. I asked how long it takes to get the results and was told 6-8 weeks. Add to that the month or more it will take to get an appointment to go over the results at the Autism clinic, and we're looking at February or March of next year before we would have any sort of diagnosis!!! Only at that point would we have been able to start the process of getting approved for ABA and the level of service J is currently receiving.
    We were first made aware of J's red flags and the possibility of an ASD in April 2012 when he was 18 months old. I made the call to set up the appointment the next day. If  our awesome service coordinator hadn't found us the place an hour a way that was able get us in back in May, J would be 2.5 years old before getting a diagnosis, and he would have missed out on almost a year of intensive therapy.  I find this to be very upsetting and frustrating. Everything you read about ASD talks about the importance of early and intensive intervention. It is heartbreaking to know that many children are missing out on these important opportunities due to wait lists and red tape. We are very fortunate to have access to the services we have right now. I thank our lucky stars every night for being assigned the coordinator we have been working with. He has done nothing but help me fight for what services I want for J, and so far has gotten everything approved.  He went out of his way to find us the place for the earlier eval, and he has listened to me ramble endlessly while trying to decide what therapies to choose.  I have heard many people complain about their service coordinators and about the trouble they are having getting services in place for their children. I understand how blessed we have been. This is why I say I heart my service coordinator. He will be coming by or J's 6 month EI re-eval on Wed. I might just have to control myself from giving him a bit fat kiss of thanks. I don't know where we'd be right now without him.

Saturday, September 22, 2012

"That look"

     Yesterday I had the chance to get out, enjoy some adult conversation, and even had an adult beverage or two. I met some former colleagues out for a teacher happy hour. I went with a group of woman I had worked with for 2 years. I hadn't seen most of them in over a year, but we are all "Facebook friends" and have been keeping in touch online. They all know that I have been taking a child care leave, but most aren't aware of why. They see me as lucky (which I am!) since I have been able to stay home with my son for so long. Since this was to be a night of fun and socialization, and since most of the people there were casual acquaintances, I didn't see the need to get into J's diagnosis, therapies, etc with everyone.
     One of the women there I felt a bit closer to. We had eaten lunch together frequently, she knew a bit more about my personal life and I about hers, and I had always gotten a bit of a motherly vibe from her. She is the mother of an adult child with some special needs and I felt comfortably confiding in her. So I went more in depth with her and explained that had been diagnosed with autism and that I  am staying home to be involved in his therapies. Her response was "I've always thought there might be something going on. He's always had a "different"'look to me in his pictures on FB".  ???WHAT??? Excuse me, but that was NOt the response I was expecting. And just what is this "look" that she feels my son has? I wasn't aware that autism has a look. I have read on several blogs and various places about people being told that their child "doesn't look autistic" I have always sympathized with these parents and been angered by the remarks and ignorance. This was my first time experiencing it personally, though I am sure it won't be the last. Now I get it more than ever.
I see eyes full of wonder

    I don't know what this woman is seeing, but when I look at pictures of J a see a lot of things. But autism is NOT one of them
gummy smiles

toothy grins

moments of awe
a comedian
a welcoming wave

mischievious looks
pure happiness
And a little boy who will melt your heart with his smile.
What do you see??


I wrote yesterday about the school that J will NOT be attending. Today I will write a bit about the one he WILL be going to, and why I decided to send him. All together J receives 22 hours of in-home therapy. I am very grateful to have this in place, and am looking forward to seeing what results will come from it. However, I have had some concern about his lack of peer interaction. Before he started with EI we would regularly go to play dates, usually once or twice a week. I was also going to the gym, and J would spend an hour or so at in the child care room there three times a week. He always seemed at ease around other children, and he enjoyed himself in the child care room. After J's diagnosis we began to increase the frequency of his therapies. As his schedule began to fill up we had less and less time for play dates, and we were no longer able to make it to the gym. I have managed to squeeze in a random play date here and there, but J hasn't had any regular peer interaction. This is why I decided to enroll him in preschool. I think it will be beneficial for him to be able to socialize and spend some time around some "typical" peers. I also think he will benefit from having some time away from mommy. He has spent pretty much 24/7 with me since he was born. It may do him (and myself!) some good to have a bit of independence, I found a nice little 2 year old preschool for him to attend. They only have class twice a week - Tuesdays and Thursdays from 9-10:30. It sounds like a nice way to ease him into a school environment, while giving him a change to interact with his peers.  His ABA teacher will be attending with him also. She will be there to support him and to provide assistance as needed. After class we will come back home and she will try to work with him for another hour.
     So yesterday was the meet and greet day at J's new preschool. All of the students attended with their parents so that everyone could meet the teachers and the kids could get a chance to check the place out. This is part of their slow transition into the preschool. Next week half of the students will attend without parents for 45min on Tuesday, and the other half on Thursday. The following Tuesday the entire class (right now 9 students) will go for one whole hour. Finally, that next Thursday the entire class will attend on their own for the whole 1.5hrs.  The meet and greet was pretty informal. The children had free play for about 35min. At the end the teachers brought everyone together to sit in a circle, introduced everyone, and sang a song or two. It was nice to meet his teachers and to get a feel for the rest of his class. There seems to be a good mix of kids. J won't be 2 until October. There were 2 boys a bit younger than him, and the other children looked like they might be a couple of months older.  I think the range of age and abilities will be good for him. It was also nice to see that J wasn't the only one that didn't seem ready to sit for circle time ;)
    When I first called to inquire about the program back at the end of July I spoke with the director for a bit. I explained our situation and J's diagnosis, and I asked her if J's teacher would be able to attend with him. She spoke with the owner who gave the ok, and DH and I brought an in for a quick tour. The meet and greet was my first time meeting the teachers. Everyone was very nice and friendly, and J's ABA teacher was able to join us so that she could meet everyone as well. I got the feeling that one of the biggest obstacles we will have to overcome will be the preschool's teachers expectations of J. They are aware he has autism, but I am not sure they quite understand what that means. One of the teachers asked me what she should expect from him. She almost seemed a bit wary. I have a feeling that they may have a preconceived notion of what autism looks like, and may have certain worries/expectations. I explained to her that with J it means he likely won't respond to his name if called, and that he will need some extra prompting/direction during different activities. Luckily JT will be there to support him. At one point the director asked me if he was talking yet and I explained that he isn't. She then asked if I thought he'd be able to tell them his name or to name colors etc. ??? Didn't I just get finished explaining that he is NOT talking yet?? I don't want to sound totally negative here. They did seem genuinely interested in learning what they could do to help J, and I think they are very caring and will take great care of him. I think I need to do a better job of preparing myself for explaining everything to people. I am J's voice, and I need to be ready speak up for him whenever needed. He is such a great little guy and I want everyone to realize that.
    So next Thursday morning I will be dropping my buddy off at school school and actually leaving the building. I think that J will do just fine, especially with JT there. How I am going to handle it remains to be seen...

Friday, September 21, 2012

Meet an Greet

Today is meet and greet day at J's new preschool. Yes, my not-quite 2 year old will be going to preschool. The whole situation is a little bittersweet. This past spring, before everything came to light with J, the plan was for me to return to work. I am an Elementary teacher, but had taken the last 2 years off to stay home with J. I loved the time with him, and my husband and I weren't a comfortable sending an infant to daycare. We had decided that I would stay home until he was almost 2. At that point he would be talking a bit and be able to tell us a bit of what was going on - right?
    My husband is also teacher, so he had a week off from school for spring break. We spent time each day touring daycare centers, making sure we picked the one we felt would be best for J. We saw a couple of great centers  and narrowed it down to our favorite. It was bright and welcoming, and the teachers seemed warm and caring. They had a state of the art monitoring system, and we'd be able to watch J in class from a computer or our smart phones! (a feature I feared might get me in trouble at work LOL) There were awesome indoor and outdoor playgrounds, and they served hot lunches with fresh fruit delivered regularly. We were very comfortable with our choice, and I was actually a bit excited. I was looking forward to picking J up at the end of the day and having him run toward me with a huge smile and arms reaching out to me. We'd bring home his little at projects and proudly display then on the fridge. I had visions of him sitting in circle time and playing with the other kids. We put down a deposit, signed the papers, and he was set to attend in September.
   About a week later we had J's 18 month check up, and the possibility of him having autism first came up. As time went on evaluations were done, therapy was started, etc. As I began to develop his therapy plan, I realized that my returning to work and J going to daycare may not be the best option right now. I really want to be involved with his therapies, and would like to be able to observe and participate as much as possible. Yes, he could receive his services at the daycare center, but I didn't think that was the ideal situation. And once I enrolled him on the 15 hr a week ABA program, along with the 5 hrs of ST and 2 OT, I realized we be paying the daycare $1000/month for him to be constantly pulled out for services. Plus, I wasn't really sure that J could handle a full day in a daycare environment right now. So the decision was made that I would take one more year of unpaid child care leave. This will give J the opportunity to receive his therapies at home  where I can participate, and I can work with him on my own when there aren't teachers here.  Yes things will be a bit tight money wise for a while longer, but in the long run I really feel it will be worth it.
    In August I called up the daycare we had enrolled J in to let them know he wouldn't be attending. When the director asked why I explained that I wouldn't be returning to work. As I was speaking with her, I found myself tearing up a bit. I got off the phone as quickly as possible  and let myself have a little breakdown. As much a I think I have a handle on things, and that I have accepted where we are on this journey, sometimes the reality of everything hits me. This was yet another reminder of how our plans/expectations have changed. J won't be attending that wonderful center we had so carefully picked out for him. I won't be rejoining the workforce yet. We won't have those rides home where he tells me about his day, and he won't be making his little projects, running on those playgrounds, and playing with the other children there. I try not to get caught up in the "what if's", and I know that we will be creating our own memories and forging our own path. But as positive as I try to be, and as hopeful I am, sometimes a bit of sadness creeps up and hits me out of nowhere. I allow myself a few moments to experience these feelings, but don't get caught up in them. I think it's all about finding some balance.

    I will write about our decision to send him to this preschool and give the details of our meet & greet later. For now, here's some pictures of my handsome guy getting ready for his first day of preschool.

Sunday, September 16, 2012

Where we've been and where we're going

I've talked about researching different therapies, but I haven't mentioned what we've tried. When I first began my quest to find the "perfect" therapy, one that stood out to me was DIR/Floortime. You can read a detailed description of what DIR/Floortime is here. Essentially it is a child-led form of therapy that encourages the adult to get on the child's level and try to share in his or her interests. The goal is to engage the child and create "circles of communication" between the child and therapist/parent/teacher/etc. Here is another great explanation of the method. I was created by Dr. Stanley Greenspan, and I learned a lot about it from reading his book Engaging Autism. What interested me the most was the focus on going with the child's interest and joining in with their play. I decided that I wanted to give Floortime a try and found an EI agency in the area that specialized in the therapy. I called up our service coordinator and requested a change in service providers. Soon we had a new teacher and a new SLP, both of whom were trained in Floortime. As usually, J did a great job of adapting to the change and welcomed them with open arms. Or at least with his little hand, guiding them into our living room and getting ready to play with them.  The sessions looked quite different from the one's he had with his previous therapists. His new SLP didn't bring the bag of toys he had grown accustomed to. Her goal was to build upon his interests in his natural environment. If he wanted to walk around the house, we followed him. If he wanted to play with a toy we did our best to join in. We were tying to "woo" him into engaging with us. If he busy with something and not paying us any attention we would try to playfully get in his way to encourage him to interact with us. I found that much of,  what I was already doing with J on a day to day basis mirrored Floortime pretty well. His teachers repeatedly encouraged our interactions, and commented that we have a strong bond. That was great to hear.
   Over the course of the summer we requested yet another increase in services and went from 3 days of 45min sessions to 5 one hour sessions each of ST and special instruction. I also requested an OT eval and J was approved for 2 one hour sessions a week. Suddenly we were very busy, with therapists coming to our house for 12 hours a week. Giving up your home to "strangers" for that amount of time definitely takes some getting used to, but his teachers quickly came a part of our routine and daily lives.
   As time moved on I continued to research and read up on different therapies.  I was reading books, blogs, articles, etc. I kept reading about  Applied Behavior Analysis (ABA) and the success that many have had with it. I was beginning to think that J needed a bit more structure  to continue to improve. Our Floortime sessions were starting to all look similar. J enjoyed going up to our second floor and exploring/running away from us.  Many of our sessions were spent following him around from room to room. He also got into the habit of leading one of his therapists to the computer to watch one of his favorite videos, and too much time was being spent watching Moose A Moose. I decided that I wanted to add in some  ABA to the therapy mix. Floortime and ABA are very different styles of therapy, and many don't agree with mixing the two. I have read of many cases where the two styles working side by side successfully though, and I want to give it a try.
    There is a great school in our area that specializes in ABA. I found that there was a waitlist, but that a spot would open up in September. I asked that our service coordinator put a request for the therapy. I was nervous that it wouldn't be approved, as we had recently been granted an increase in services. We were already receiving 12hrs of therapy per week. The ABA would be 15hrs on it's own. It would take over his current 5 hours with his SEIT,  but he would continue to receive his 5hrs of ST and 2hrs of OT per week. So all together he would be receiving 22 hrs a week of therapy. Once again our awesome service coordinator came through and everything was approved. He was also able to add in a social group one evening a week, which is geared towards kids with communication delays. A busy schedule to say the least. But everything I read talks about early and intensive inetrvention as being key to seeing growth, and I want to make sure J is able to take advantage of every opportunity available to him.
So here is our current schedule:
ABA - M-F from 9-noon
ST - M-F 3:30-4:30
OT - W&F 8-9
Social group M - 6:15-7:15pm
Yes, my not-yet 2 year old needs his own day planner - or at least I do to  keep track of it all. In the next few weeks we will also be adding preschool into the mix. I will write more about that in an upcoming post. We are only 2 shortened weeks into ABA so far, so how effective it wil be with j remains to be seen.

Saturday, September 15, 2012

Where's the manual??

After J was diagnosed as being on the autistic spectrum I felt as if I was thrown into a foreign land and I didn't speak the language. As I began researching the next step I was bombarded by acronyms - ASD, PDD-NOS, ABA, PRT, DIR, ST, OT, VBA, DAN!, GFCF, and on and on. My head was swimming trying to make sense of it all. Yes, knew that J had an ASD, but what I wasn't sure of was what to do about it. Doctors did a great job of making us aware of the red flags and of getting us a diagnosis, and our service coordiator was helpful with getting J's services increased. However, no one told us what to do next. Type autism into a search engine and you will get a seemingly endless amount of results. There are pages upon pages of articles on autism - what is it, what causes it, what therapy is the best, can it be "cured", etc. Much of the information is conflicting.  It is hard to make sense of it all. Everyone seems to have the "answer", yet none of the answers are the same. All I knew was that my son needed my help, but I felt unequipped to give it to him.  I begged our sevice coordinator to point me in the right direction, but he was unable to do so. He is able to help me get the services I want, but he is not allowed to recommend one over the other. The doctor that gave J his diagnosis didn't give us any course of action either. All I wanted was for someone to say do _________ and you will see ___________ results. Don't tell me there is something "wrong" with my baby and not tell me how to "fix" it. (Don't get me wrong, I don't think there is anything WRONG, with J, nor do I want to "fix" him. I do however want to give him every opportunity to succeded and be happy in life) I frequently complained that we should have been given a manual of instructions on what to do next. A little guidance would have been greatly appreciated.
I began to immerse myself in information. I researched various therapies and ordered several books on the topic. I became frustrated when my interest would be sparked in a certain therpy, only to find that there wasn't anyone practicing it in my area. I became consumed with trying to figure out what steps to take next. Just when I thought I had made a decision I would change my mind again. I felt as if this were one of the most important decsions I would have to make, and I wanted to be sure to make the right one. What I finally came to realize is that there isn't one correct answer. Every child is unique and has his or her own set of needs. What works for one child may not work for another. It may also take a combination of things to find out what will work. It is going to be a journey filled with trial and error. I need to accept that and have faith that I am doing what is best for my boy.

Friday, September 14, 2012

Evalution part 2

As I mentioned before, about a week after Jake's initial evalution an appointment opened up at a developmental clinic in the area. I was eager to go since I didn't feel as if is his initial evaluation was very thorough, and  was hoping to gain a bit more insight on what was going on with Jake. I was also hoping we might get a bit of advice and direction on what steps to take next.
     The clinic is located in a local hospital. The evaluation took place in a small room with a couple of chairs, a counter and a small table.  After getting his height and weight a pediatric nurse practictioner came in to speak with us. She asked my husband and I some questions and we expressed our concerns. We also saw a child psychologist d and an educational specialist. Each evaluator brought in a few different manipulatives and attempted to do some basic activities with Jakob. I wish I had started this blog earlier as I would have a better memory of exactly what was done. I do remeber that a lot of what they did was similar to his initial EI evaluation. 
    Afterwards the 3 evaluators met to discuss their findings, then one came in to speak with us. She very kindly went over the results. This is the part I always find the most difficult. While I am obviously aware that Jake has some developmental delays, it is always hard to hear the facts from someone else. At the time of the evaluation Jake waas 19.5 months old. He scored at 12.7 months cognitively, 8.8 months for language, 17.5 for gross motor, and 12.5 months for fine motor. Those were some hard numbers to swallow. (I wish they would have given scores for cuteness, personality, and affection as he would have scored off the charts!) Then she asked if anyone had mentioned autism to us. (We hadn't mentioned his previous diagnosis as we were hoping for an unbiased evaluation) I explained that our pediatrician had brought it up at his 18 months well visit and that was what had brought us there. She said that he was displaying some characteristics consistent with an autism spectrum disorder, but that she didn't want to give an actual diagnosis yet due to his young age. She was happy that we were alredy working with EI and recommended we come back when he was closer to 2 for further evaluation and diagnosis. At this point I was thankful for the evaluation we had done prior to this, as the diagnosis of PDD-NOS opened the door to increased therapies.
     On the way home I asked my husband what he had thought of the evaluation. He said he felt it was more thorough, but that he didn't like what they had to say as much. As I said in my prevvious post, the last doctor we saw for an evalutaion came right out and said that Jake "definitely wasn't autistic". I know that my husband was hanging on to that statement,and was still in a denial. While I wasn't happy to hear what the evaluation showed, I was glad that my husband was able to hear the "A" word from a professional, as I don't think he completely believed my concerns. Still, he is holding on to the hope that when we go back for further evaluation they will tell us that he is NOT on the spectrum.
     As soon as we arrived home I gave our service coordinator a call. With the diagnosis from the week before and the write up we received at the second evaluation, we had enough proof to warrant an increase in services from EI. He put in for an increase in both ST and SEIT. We were approved for 3 45min sessions of each per week. My next step was to continue my research and to try to chose what therapy/services would be best for my little guy. More about that journey in another post.

Tuesday, September 11, 2012

What's that I hear??

Ahh, the sound of silence. No pitter patter of little feet scampering around, toys being played with, or Little Einsteins singing. Why? Because Jake is taking a NAP! That may not sound like a big deal to some, but it has been over 2 months since he has taken a nap in his crib. One day he was taking 2.5-3 hour naps, and the next he stopped all together. It didn't happen without protest - those hours while he slept were too precious to me. They gave me time to get some housework done, catch up on phone calls I needed to make, do some online research etc. (Or lay on the couch, catch up on my DVR or FB, maybe take a nap of my own - but we won't mention that LOl) I continued to put him in his crib each day, hoping that one day he would magically start napping again. He had other ideas. He would walk around his crib, work on his jumping/bouncing skills, discover new noises, throw things out of his crib, etc. The one thing he did NOT do is sleep. The only way I could guarantee he would nap was to get in the car. He would be asleep before we even made it out of our subdivision. Unfortunately he would only sleep in the car. As soon as I tried to take him out and bring him in the house he would wake. So if I wanted him to nap I'd be stuck driving around- or parking in the shade and reading a book. Not exactly peaceful or productive for me. I would usually resort to one of these car naps after several days without a nap or after an especially early wake up. Otherwise we'd get into a vicious over-tired cycle and his night sleep and demeanor would begin to suffer. This also makes it difficult to go anywhere in the afternoon as he is bound to fall asleep before we get there. I have been hoping that once we got started with his 3 hours of ABA he might get tired enough to nap again.
     Well today it finally happened- after an hour of playing around, just before I was ready to get him out,  he fell asleep! And slept for 3 hours!!! The combination of not napping in over a week (no car rides) and working with his teacher must have finally gotten to him. I have no idea if/when it will happen again, but it gave me some hope. Maybe he will actually start napping again, maybe not. But for one afternoon I relished in having a few hours to myself. A few dishes were washed, some laundry was put away, and there is a little more space on the DVR ;)

Evaluations/Diagnosis Part 1

I have been working on this post in draft and am finally going to post it. Sorry that it is a bit out of order. If I figure out how to move my blog posts around I will do that at a later date. But for now I'm still a newbie at this, so please forgive me

In April, after our pediatrician recommended further evaluation, I began calling places to try and schedule one. The major Autism school in our area had a wait list until November or December. The Autism clinic at our local children's hospital didn't have anything until September. While this wait time might  not seem like a lot, to me it seemed to be forever away. I was frustrated because everything I have read talks about the importance of early and intensive evaluation. If we were looking at more than a speech delay I wanted to make sure to get Jake all of the help possible. 6 months is a lot of time in the life of an 18month old. At this time he was still receiving just 1.5hrs of therapy a week (45min of speech and 45min with a teacher). If we had to wait until September to even get a diagnosis, I wasn't sure how long it would be before we would be able to increase services. Our AWESOME service coordinator called me to say he had found a clinic about an hour away that could get us in within 2 week. I said "SIGN us up!!" So May 17th became our "D" day.  

     The clinic sent some paperwork/checklists for me to fill out and send back ahead of time. My husband was able to take the day off from work and made the drive with us. When we got there Jakob charmed the pants off of all of the ladies in the waiting area, walking into all of the offices and giving his charming smile. The man doing the evaluation was a child psychologist and behavior specialist. I went into the appointment expecting him to do some work with Jakob and for him to try interacting with Jake. Instead he spent the time going over some of the paperwork I had filled out ahead of time and asking my husband and I questions to complete some additional checklist. The following instruments were used:
Child Behavior Checklist for 1 1/2 - 5
Vineland Adaptive Behavior Scale II

     I was surprised that he didn't attempt to engage Jake at all, though I guess he was observing him moving about the room as we talked. His results on the rating scales were a bit varied. In the CBCL he scored in the normal range on all items but Pervasive Dev. Problems, in which he was borderline. On the CARS-2 He scored a 27.5 which indicates Minimal Symptoms of Autism Spectrum Disorder (30 is typically the cut off for ASD). He showed red flags in several areas on the M-CHAT, and scored in the lower percentiles on the Vineland. I won't pretend to know what all of these mean, but the doctor went over them all in a general way. Basically he told us that he meets some, but not all, of the requirements for Autism.
     This is where he made my blood boil a bit. My husband asked what all of this meant, and what does he think of Jake. The doctor came out and said "He is definitely not Autistic" to which my husband breathed a sigh of relief - that is all he wanted to hear and he would have been happy walking out the door at that point. I probed further and asked what his diagnosis would be, pretty much pulling an answer out of him. He said he will be giving him a diagnosis of PDD-NOS. Hello! PDD-NOS IS an Autism Spectrum Disorder!! I asked him some leading questions to try and pull this out of him. To this point my husband was pretty much in denial of the possibility of Autism. He was blindsided when the doctor first mentioned the possibility of it at  Jake's 18 month well check. In his eyes we were dealing with a speech delay and that was it. Having this doctor come out and say flat out that he is not autistic didn't do anything to help my case. I had been researching everything ad nauseam so I understood that PDD-NOS is and ASD and agreed that Jake was showing many of the red flags. It made me angry that this doctor would make such a statement. If I hadn't educated myself beforehand we would have walked out blissfully ignorant, believing that Jake "definitely isn't Autistic". I felt that this was very irresponsible of the doctor. As parents we trust professionals to help us and our children, and to give us guidance. It doesn't help when doctors try to sugarcoat a situation or give false information.
     The next day I received a call from another local clinic saying that they had a cancellation and as a result had an opening the following week. Of course I jumped on that opportunity also. I will write about that evaluation in another post :)

Monday, September 10, 2012

Surprise break

Someone must have been listening when I wrote last night's post about enjoying our time off on the weekend. Our schedule today was supposes to be:
9-noon- ABA
11:45-12:45- ST (ABA teacher graphs for last 15 min so they overlap)
6:15-7:15- social group

Busy day to say the least. Jake woke around 7 (he finally started sleeping past 6 this past week!) And we came downstairs for a glass of milk. We got dressed and I started making breakfast. Just past 8 his ABA therapist called to say she is sick and wouldn't be coming today. At 11:30 his ST called to let me know she got stuck at a meeting and also wouldn't be coming today. THEN at 12:45 the woman who runs the social group called to say that she had a death in family and group would be canceled tonight! So we went from a packed schedule to absolutely nothing just like that. I can't believe that we had not one, but 3 cancellations in one day!
    Typically I'd welcome the break, and I wouldn't have minded one or 2 cancellations. However, we JUST got started with ABA and I was looking forward to Jake continuing to build his relationship with JT and to get our routine established. We already had to cancel this upcoming Thursday's session because Jake has the second part of an evaluation scheduled that morning. So instead of having his first full week of ABA he will have another 3 day week. I know that in the grand scheme of things missing one day isn't a big deal. And Jake and I got in some extra playtime and were able to get out and enjoy the beautiful day. There's nothing wrong with that :)

Sunday, September 9, 2012

Ahh, the weekend

Even though I am still on child care leave to be home with Jakob, I still look forward to the weekends just like I did when I was teaching. We have 2 days free, with no therapies or classes. I don't have to worry about 2 or 3 people knocking on the door at various times of the day. If I don't feel like getting out of my pajamas until 10:00 in the morning (who are we kidding, sometimes later ;) I don't have to, and I can leave the breakfast dishes in the sink for a bit if I want to. We have no plan or schedule to follow and are free to do as we please. Granted this often means doing absolutely nothing but that's the way I like it. Jake has a chance to relax and just be a kid, and my husband and I get to enjoy our time as a family. Now it's Sunday evening and I am going to catch up on some DVR before heading to bed and getting ready for it all to begin again tomorrow.

Saturday, September 8, 2012

First week down!

  Jake started his new ABA program this past week. Since it was a holiday weekend his teacher only came 3 days. As I mentioned in my earlier post I was a bit anxious about everything. One of my main concerns is how he will deal with the structure of ABA as opposed to the freedom he has had with DIR/Floortime. I was also nervous about meeting his new teacher and hoped that he would develop a relationship with her. When I first opened  the door and saw his teacher I felt a sense of relief. We used to frequent a local playroom. While Jake and I were playing I would often see a woman there with little boy. His mother and younger brother were there also, so it was obvious she was a teacher of some sort, and I always suspected he was on the spectrum. I was always impressed with the teacher's interactions with the boy. It turns out that she is Jakob's new teacher! I had never spoken with her before, but I saw her often enough that I almost felt like I knew her. It took away some of my worry to open the door and see a familiar face. Jake seems pretty comfortable with her also. After she brought in all of her materials he grabbed her hand and led her into the living room, just like he does with his other teachers. I am continuously amazed at how well he adapts to change, and how easily he seems to relate to new people.
The first day was spent getting to know each other a bit. I showed her a few rooms that are available for her to use, and we picked out a main work space for them. They will do most of their programs in one of our spare bedrooms where there will be minimal distractions. We spent some time playing in there and then moved down to our main floor. We then moved outside and gave Jake an opportunity to play in the water table, which he loves. While we were outside our neighbor was walking by with her two children. The little girl is just 2 days younger than Jakob. They came up the driveway to say hello. When the little girl went to get in Jake's little car he got excited and approached her. He walked up and reached out to touch her arm while smiling away. His teacher was excited by this "interaction". She said that it is good sign that he seems to show an interest in other children.  Many of the children that she has worked with have shown no desire to interact with their peers. Hopefully this trait will continue and will prove to be an asset for Jakob.  After some swinging  time on our playset with the neighbor kids we went back inside. I made Jake's lunch while he went upstairs to the spare room with his teacher for the final 15min. He readily went with her and they played together for a bit. All in all a pretty good first day.
The next day his teacher (we'll call her JT from now on for Jake's Teacher) brought him right upstairs after she arrived. We decided that it will be best for me to stay out of the room for at least the beginning of the program so that Jake is not too distracted and they are able to get a good routine and working relationship established. (I went out an bought a camera to add to his video monitor system so that I can watch the sessions remotely for now. We set it up this weekend so I will start using it on Monday) They were upstairs playing for a solid hour and a half. I heard a few protests here and there, but nothing major. When they came downstairs JT said that he did well. They are still primarily playing while she tries to get a feel for what will be reinforcing for him.  He cried or got fussy a few times, but she said it never lasted more than a minute. We gave him a little snack and a bit of a break, then they went to play in the basement play room. There were down there for about 20 min then came back up to attempt to go outside. At this point he started to get a bit fussy and wanted to be with me. We tried distracting him and getting him engaged with JT again, but he wasn't having it. Since he had been "working" with her for over 2 hours we decided we would call it quits for the day.  She said he had done a great job for his 2nd day and that we can only expect so much for such a young guy.
Friday followed the same pattern. They started upstairs, came down for a snack, played in the basement, then went for a walk outside, This time he made it through their whole session without having a meltdown. JT started incorporating a timer in their sessions upstairs. One of Jake's favorite things to play with is the iPod touch. She will be using it as one of his reinforcers. She will do a few tasks with him, then offer him the touch or another toy to use as a reward for a short time. As is to be expected he isn't very happy when it gets taken away. She set a timer for 1.5 minutes to give him a warning that it is time to give it up. I guess he caught on to the idea pretty quickly and was able to give it back without protest. She also said he quickly figured out that giving it up meant it was time to work and would try to run away LOL. Overall she said she was impressed with him over the three days and has high expectations. She is also weary of the "honeymoon" period ending once they really get to work.
   All in all I am happy with the way his first week went. He seems to be developing a good relationship with JT, and I am confident in her ability to try and  bring out the best in him. Let's hope next week goes as smoothly...

Long day...

Thursday, September 6, 2012


I *think Jake said his first word today! My mom was visiting and Jake was playing with a sign language app on his iPad. It has really cute cartoon type kids doing signs and saying the words (baby sign and learn- awesome app) Anyway, he was on the page for "cookie". He hit replay about 6 times in a row and I kept hearing the little computer kid say cookie. Then Jakob started walking towards my mom and I with the iPad in hand. Then I hears this little whisper voice say "cookie!  I thought maybe I was hearing things, then my mom asked if I had heard the same thing. It may have been a fluke, and I don't know if/when we will hear it again, but it definitely gave me hope. I can't wait to hear that sweet little voice again!

Tuesday, September 4, 2012

ABA starts tomorrow!

Tomorrow will be Jake's first day of in-home ABA therapy. I am nervous and excited at the same time. I am eager for him to begin, as I am hopeful that he will respond well to the structure. At the same time it is the structure I am also afraid of. Up until now all of Jake's therapists have been DIR/Floortime trained. Floortime is very much child-led, and Jakob has pretty much been running the show as far as how his sessions go. I am afraid his little world is going to be rocked when he is suddenly forced to follow someone else's agenda. New therapy also means another new teacher. This will be his 6th teacher since he started with EI back in April. (I will get into the ins and outs of how the teacher changes came to pass in another post.) So far he has done an excellent job with the changes he has been faced with. He has managed to build a relationship with each of them, and I think they each fell a little in love with him. (Let's be honest, how could you not? ;)  I have been amazed and impressed with his flexibility and his ability to go with the flow. I know that one of the challenges of ASD can be inflexibility and a need for routine. So far Jake hasn't shown a problem with change, but I guess it remains to be seen if that will continue to be the case.

On a typical morning Jake will greet his teachers at the door with a big smile, close the door behind them after they walk in, grab their hand, and drag them into the living room to "play". Tomorrow he will go to the door and not recognize the face he sees when we open it. I am curious to see how he will respond, and a bit anxious about it also. Will he be able to develop a relationship with her as he has with his other teachers? How surprised and/or resistant will he be when she tries to change things up? From what I understand, his new teacher should be spending a few days getting to know him and helping him get comfortable with her before jumping into his program. I hope this will be the case. My boy is such a sweet and loving little guy. He always seems eager to please and is very easy going. I am hoping that this change doesn't bring on too much anxiety for him. I went to a support group a few weeks ago and had the opportunity to speak with some parents who had their child start this program around the same age as Jake. One thing they all warned me about is to expect some tears. This is going to be a big shift in things for my little guy. They told me to be prepared for some crying, possible tantrums, and general protesting once the program gets going. This is one thing I am going to find extremely difficult to handle. I, like every mom out there, can't stand to see my baby cry. I always immediately do whatever I can to ease his pain/worry/etc as soon as possible. I don't know how/if I will be able to keep myself from stepping in if he has a meltdown. I don't yet know how involved I am going to be able to be when the program initially gets going. I am not sure if it will be easier for him to have me in the room or if I will be too much of a distraction. I am sure it is going to take some trial and error to figure out the best set up.
I guess I have a bit more anxiety about this than I realized. I know (or hope) that in the end this will be what's best for him. I just hope the journey isn't to painful. Tomorrow we will let yet another "stranger" into our home to work with our precious boy. I only hope she is up to the task, because I hold nothing but high expectations. He is a little boy above and anything else. A little boy that I love more than anything in this world, and will fight for with all I have. Here's hoping his new teacher is ready, willing, and able to care for my little man.