OT-Take two

After an unsuccessful first session, we headed back to our OT for round two.  I was really hoping that Thomas would open up, because 1) she can't help him if he won't participate and 2) I really don't like writing out a huge check to have him sit on my lap for 45 minutes.   I explained in my last update that he was unable to be evaluated at our first session, but after giving her an extremely detailed account of Thomas and all his sensory issues, we had a much better session yesterday.  She is unable to get her hands on him due to his resistance, so she is first trying to gain his trust and then she will work in sensory activities through play once he is comfortable.  It took awhile, but this time he warmed up through play and started talking to her.  The key is to really make it easy going with no expectation.  She wanted to see us weekly, but I explained with her sessions and the Smart center being out of pocket we simply cannot afford it.  Not to mention I need to get a babysitter for our baby each time and she lives over 30 minutes away in another state!  We are going to try every other week for now and do everything we can to make this work, since this seems to be our missing puzzle piece that is really creating major obstacles for Thomas. 

Future classmate playdate

Thomas had a play date yesterday with a new friend that will be going to his school in the fall.  His teacher put me in touch with a family that had a little boy who she thought would be a perfect match for him.   It went very well.  We were very happy that Thomas didn’t have any panic attacks and seemed to have a good time playing with him.  He was speaking when he felt comfortable, which was a good amount.  We started out by building a train track together and then went on to different activities.  He even gave the dad a hi-five when they left.  We did some proprioceptive OT work recommended by Barbara before the playdate, including heavy lifting, skin brushing and joint compression to help calm him so maybe that helped too.  I am currently working with Barbara and the school district to include OT into his IEP.  He is eligible for this 1x/week for 30 minutes. 

Summer camps summary

Thomas attended a science camp at his preschool from the past year the last week of June that went very well.  (See post from July 7th)  It was a small amount of children and although he had separation issues, he had a fun time once I left.  So we decided to sign him up for a regular camp at the same school with the same teacher in the same room a few weeks later.  We were very hopeful it would go well, since science camp went pretty good.  It did not.  He was not very happy the first day I picked him up.  He said it was too many people and too much noise.  There were a lot more people at the regular camp, but we asked if he could give it another try the next day and he did.  When I picked him up the teacher told me he didn’t have a good day and that he was crying a lot.  We asked him if he wanted to try again tomorrow, but he didn’t and so we decided to pull him out of camp.  He went to this camp last year and had a great time.  He ended up going both weeks and now this year he couldn’t even do two days.  So confused and frustrated.  I feel so sad for him and so desperately wish I knew what was going on in that little head of his.  I have to keep focusing on the positive and everything he is making progress with though.  The fact that he enjoyed one out of two summer camps really is a success.

School tours over the summer

We went to tour Thomas's new school for the first time yesterday.  It was suggested by his doctor that touring his new school over the summer if possible, would help him become more familiar with it and hopefully decrease his anxiety come school time.  He had a good experience.  He was overwhelmed with how big it was, but he liked being able to see his room for next year.  He did not like the gym.  He said it was too big, but he loved the fact that his new school had its own library.  We explored for awhile by ourselves.  We will be going back several times in August to visit and walk around.  We are so lucky to have such a great school district that allows up to do this.  We have another playdate with the teacher in August where we will do a teacher interview.

Sensory Processing books

So in my quest to learn as much about sensory processing disorder as I can, I picked up two books at the library Sensational Kids: Hope and Help for Children with Sensory Processing Disorder (SPD) and The Sensory Child Gets Organized: Proven Systems for Rigid, Anxious, or Distracted KidsBoth of these were suggested by the new OT we are seeing.  I have only begun to read the first one, Sensational Kids, but it is like this book was written for us.  I see so much of Thomas in this book and the first night I read over 90 pages!  I highly recommend this for those wanting to learn more about sensory issues.  The examples of kids with different sensory responses is wonderful and easy to understand.

Sensory-the missing puzzle piece?

As I mention back in March we took Thomas to be evaluated by an OT, because the doctor treating him for SM, believes that his disorder stems from some sensory issues.  They had a very tough time evaluating him, because he was shut down and would not participate, so they felt that his limitations were more a result of anxiety than sensory and so they didn't feel that he would benefit from therapy at the time.   I was kind of relieved, as it was one less thing to worry about and one less therapy session to take him to once a week. 

Four months later, and he is still having so many problems that seem to relate to sensory.   He seems so scared of his environment-swings/slides/movement/noises/crowds.  So we reopened the sensory discussion with Dr. E. and went to see an OT who works with children with SM.  Of course this is not covered by insurance, but we've gone this far and I'm not about to give up on him now, so we march on.  Thomas had his 2nd OT eval, (first with the new OT) on Friday, July 11th.  It was in a more inviting atmosphere, the woman's home, but still he refused to participate/engage over the course of 2 hours.  He refused to get off my lap, as his separation anxiety is still at an all time high.  

So many mixed emotions ran through me-frustration, anger for paying all this money to have him refuse to participate, sadness for him because he was once again scared, and then relief, because as I talked with her and she observed him, she could tell he had sensory issues.  She asked me to write up his life story for her, including my pregnancy, when I went home.  Over the next few days, I work very hard to come up with an extremely detailed view of our son's life and as I was writing this, I could see sensory red flags popping up everywhere!  Separate instances of behavior that seemed like nothing came together to create one big picture of all his sensory struggles.  How did I miss this!?!   Thomas is doing well with using his words when comfortable, but he is still really struggling in certain sensory stimulating environments.  I really do feel that OT will help his sensory issues and may be the missing puzzle piece to getting Thomas to really thrive outside the home.  The new OT believes that she can help him in many ways, including implementing a sensory diet and so we are beginning OT with her every week/every other week as our tight budget allows. 

Selective Mutism Family Fun Day

What an amazing day today! Thomas was diagnosed with SM almost a year ago today and this past year of life has been full of ups and downs, struggles and successes as we help him through this. Today we were able to attend SM family fun day at a camp organized by the Selective Mutism Center where he gets treatment. It was so great to talk with other families going through the same thing and to speak with children who have overcome this. A priceless day for Thomas and us!  

Teacher playdate

We are soo incredibly lucky to be in a school system this fall with wonderful teachers who will go above and beyond their written responsibilities.  As part of our therapy, it was recommended to have a playdate or two with his teacher prior to the start of the school year, so that he could build rapport and comfort before working with her in the classroom.   We asked if he could come visit her classroom this summer to meet her, but she did one better and offered to come to our house.  Amazing! 

Thomas met with his teacher for the fall today at our home.  She came over for her first "playdate."  She brought a few games, but he did not want to play.  We got him to engage with her a little by talking about trains.  He started to play trains with her, but then suddenly had a panic fit where he was screaming for me to hold him.  His separation anxiety seems to be getting even worse.  He wanted to hold my hand in the playroom the whole time and even was so upset when I tried to walk over to get a new toy out of the bin in the same room.  This has never been an issue before and in the past month and a half, it has been all the time.  He eventually warmed up and whispered that he wanted to show her his can of nuts that a snake pops out of and also wanted to get dressed up in his scuba diving play gear and show her.  Overall, not a bad first meeting.

When she left, he told me it was a “little scary” on his chart.  We talked about her being his teacher next year and how he was special because he was the first to meet her.  He agreed that he would like to have another playdate with her and I have already been in contact to set up another one. 

Science Camp

The question of whether to send Thomas to any type of camp this summer was something my husband and I discussed a lot.  Our only option was to send him to a camp at the preschool he attended, because it was familiar, with familiar teachers.  He did really well at the camps there last summer, but due to all his recent increased anxiety we kept going back and forth.  In the end, I decided to sign him up for the science camp there, which only involved about 6-7 children, one of which was a buddy from class and his town.  I thought that knowing someone in his class would help and it did.  He attended the last week of June and had a really good time. 

Every morning though he would scream and cry that he didn’t want me to leave at drop off.  He never had separation anxiety until the beginning of June when all of this clinginess started.  Every day I picked him up, he was happy and had a great time.  The teacher even said she was surprised at how well he was doing.  He was initiating and responding with other kids.  Great!

It is still a constant roller coaster of ups and down with him and we never know what to expect.  We have made some progress the past few weeks, but the panic attacks and clinginess are still very much a part of his every day.