Doctor visits, Baths and Haircuts Part 2

 Another source of major stress for J has been the bath. He has pretty much cried for every bath since day one. When he was an infant we would bathe him in padded baby tub in the kitchen sink. He would cry from start to finish. I always thought (hoped) that he would enjoy baths better when we were able to put him in the tub. All of my friends with small children would tell me how much their little ones loved bag time, and how it was a relaxing and enjoyable part of their bed time routine. I had hoped that we would be able to experience that with J as well. When he was 10 months old we moved to our current house which had a nice bathtub for him. I had visions of him happily splashing and playing in the water while we bathed him. Yeah, not so much. He would stiffen his body so that we couldn't even sit him in the  tub. And he would get himself so worked up he would do that cry where he doesn't breathe for a few seconds - you know the one. Eventually my husband had to get in the tub with him. He holds him in front of himself as J screams while I try to wash him as well as I can.  A far cry from an enjoyable experience. We have also tried the shower, with DH bringing him in. We didn't fare any better with that, and a screaming, writhing J is extra slippery when wet. After a few months I got the idea to bring our netbook in the bathroom and I would play Bubble Guppies. This worked for a few weeks. He would calm down enough to watch his show, and we were able to get him pretty clean. Unfortunately, and I'm not sure why, but this eventually stopped working and he went back to screaming.  Needless to say, bath time is anything but relaxing and enjoyable.
     I am having a hard time pinpointing just what it is that J hates so much about baths. We bought him a water table this summer in an effort to get him more comfortable with the water. He LOVES it. He will play in the water for half an hour, splashing away and even dumping water on his head, chest, etc. So it doesn't seem to be the water itself he is afraid of. He even shocked us this summer and walked right into a local wading pool on 2 separate occasions.  I thought maybe it was the tub itself. But one day he walked into the bathroom and tried climbing into the tub. I picked him up and put him in and he walked around playing with all of the tub toys that he won't even glance at when we are trying to bathe him. So the tub doesn't seem to be the issue. I considered that maybe he doesn't like being naked, but if he's not getting a bath he loves running around in the buff. I fill the tub when he is downstairs so he isn't hearing the water rushing in. I have tried having the water ankle height and a bit higher and have played with the temperature of the water a bit. So far the right combination eludes me. I really wish I could figure out what it is that causes J so much anxiety. I feel awful hearing him scream and cry and be so obviously stressed out. And it definitely doesn't do anything for my stress level. There are some definite sensory issues here, I just need to figure out what they are. Unfortunately, baths are not optional, the little pigpen needs to get clean.
    I have a new plan we are going to try this weekend. The shower in the master bath is a fairly large walk-in. I am going to get a rubber mat to put on the floor (to make is less slippery) and then put his water table in the shower. I figure we can do baby steps and see if he will play with the water in there. And while he is playing I will do my best to wash and rinse him. I have no idea if it will work or not, but at this point I am willing to try anything!

After one of his first baths

And the stunned aftermath

    The last thing that causes J stress and anxiety is getting a haircut. Fortunately these don't occur as frequently as baths :) To date J has had 4 haircuts. The first one was just after his first birthday. I took him to one of those kids cuts places. There was a play area with a bunch of toys. J played mostly happily, but started to get a bit cranky as we had to wait longer than expected. When it came time for his haircut they tried sitting him on a type of  horse seat, like you would ride outside of a department store. He wasn't very balanced and needless to say he hated  it. I ends up holding him on my lap. As soon as the woman tried coming towards him with the scissors he lost it. He was wiggling and crying and wound up turned facing me. Somehow the woman was able to cut his hear while he was flailing around. It was not an enjoyable experience for anyone involved. J was miserable and crying, and I was stressed that his ear would get chopped while she was cutting his hair. Luckily we all made it out in one piece. I decided I would never take him to get a haircut by myself again.

Before haircut #1

and after :)

   The second haircut happened while we were visiting my in-laws in Florida. As I was snapping pics of J on the beach it became painfully obvious that he was in need of another haircut. I found a kiddie hair cutting place and off we went. This time I had back up - my husband and mother in law. We also had out trusty net book loaded with Bubble Guppies. This salon had a little plane for J to sit in. It was a more stable seat than the horse. J actually ok for a few seconds at the beginning and I was able to distract him a bit with the Guppies. He became increasingly upset, but again he was able to get his haircut unscathed.

At the beach before haircut #2

Sitting in his plane waiting 

Swinging at the park on the way home :)

 
    Haircuts #3 & 4 happened at a different kids cuts place near our house, with similar results. Again, I made sure to have my husband and some Bubble Guppies on hand. There is a small toy area, so I always make sure to arrive a few minutes early so that J has some time to relax and play. This weekend when we went it was much the same as his previous visits. He is ok for the first few minutes, but gets increasingly upset as the hair cut progresses. The Bubble Guppies become a bit useless as by that point he's really not paying attention to anything but trying to get out of the chair. Luckily the woman who cuts his hair is very speedy and confident. I would be terrified of going at a flailing boy with scissors, but she is great at it. Our appointment was at 9:30 and we were in the car and on our way home by 9:38. Getting his haircut is definitely not one of J's favorite things, but luckily they only happen every few months or so.

The day before his last much needed haircut

and enjoying his post-cut sucker :)

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.

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
M-CHAT
CARS-2
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 :)