Christmas Cheer

Christmas was great for our family this year!  Thomas was very comfortable on Christmas Eve and Christmas with family.  He had no problem ripping open presents and saying thank you to people when prompted.  Christmas night he went upstairs at his grandparents' house and parallel played with some of his cousins.  He also sat at the kids table for the first time ever!  He really is becoming a typical kid, which is so amazing to see.

Also every year my husband's family has a huge get together with family we only see once a year.  We always do a big cousin picture (about 15 kids) on a small couch.  Thomas has never been willing to do this.  Until this past year, when we discovered his sensory issues, I always thought it was solely an SM thing. Now that we are treating his sensory processing issues with a consistent sensory diet and OT, I have learned that all the bumping and jostling of all the kids combined with his tactile defensiveness made something like a picture extremely anxiety provoking for him.  I would love to post a pic of it here, but because it involves so many people's children, you'll just have to imagine how great it was!    He also got a present from two people he didn't know and gladly went up and said thank you to them in a clear voice.

Yesterday when we were at Target, he said "Mom we haven't done our scavenger hunt in a while.  Can we asked someone for something?"  Of course I said yes and he did great!  Just scheduled our next Dr. E appointment for the beginning of February.  It's been 3 months already.

School Holiday party

On the last day of school before break, Thomas's class had a holiday pj party and he insisted on wearing his blinking Rudolph nose and antlers.  We talked about how a lot of kids would probably be asking him questions and giving him attention and he was excited.  I was cautiously optimistic and you know what, he did great with it!

Parents were invited to come for the last half hour of school that morning and join in the party.  Thomas's baby brother and I went to see him and he was so excited to see us.  All the extra people (parents, siblings, etc.) threw him off a little and he was much more reserved, but he had a great time.  He was chatting with me and his brother.  They played musical chairs, and while he decided he wasn't comfortable doing it with all the people there, he was able to be the dj.  He loved turning the music on and off with his teacher and watching the kids try to find a chair.  He had a huge smile on his face.

In the past, I would have always felt sad for him that he wasn't able to participate in the game, but because he was given a special job and he felt like he was a real part of it, I wasn't sad at all and neither was he.  Some teachers get it and some don't.  Last year's did not, but this year's teacher does and it makes ALL the difference.   She found a way to include him and instead of him or I or anyone else focusing on what he couldn't do, we focused on what he could do.  His smile said it all that day!

Musical Chairs- a big sensory step!

Thomas was sick on Monday and Tuesday this week and missed school.  When he came back after being away for two days, the teacher said he was completely mute for the first hour, which had never happened before.  It took him a long time to warm up, but then things went back to normal from there.  I know we will probably face the same thing after winter break and told the teacher to expect this.  He is really thriving at his school though and enjoys going there.  

We are continuing to do many playdates and he is so comfortable with the children in his class.  Last week Thomas and I went to a pizza place with two other classmates and their moms.  The parents all sat at one table and the kids at another.  He was talking away and having a great time.  A few of the teachers came into the pizza place during their lunch break including his teacher and the gym teacher and he easily talked with both of them in a loud voice! 

Thomas's teacher told me he played musical chairs the other day with his classmates.  He wanted to participate, but only if he got to hold the teacher's hand.  He ended up coming in second place.  This game has a ton of bumping and jostling, as well as noise, so this was a huge step for a sensory defensive child.  The second time they played he was the dj for the radio.  I was so glad he tried.  

A visit with Santa

So in past years, this post would pretty much go like this... Saw Santa, froze, refused to go near Santa, cried, went home.  As with all things that have been happening lately though, we were pleasantly surprised.  We started the conversation with Thomas about seeing Santa right after Thanksgiving.  In past years he has wanted to go, but this year he was super excited.  He started rattling off all the things he wanted to tell him and want he was going to ask him to bring for Christmas.  We wrote out his list and brought it with us just in case.  Luckily we went somewhere that lets the children warm up to Santa before shoving them on his lap and getting a picture.  We belong to a mom's club and every year they have a great Santa event where families get a picture with Santa in exchange for a Toys for Tots donation.  Everyone has an appointment time, so it is a calm, unrushed event which is so essential for children with sensory issues and a complete 180 from a mall experience.  Our appointment was at 5:15- an unideal time for my 17 month old, but my focus was really on how Thomas would do this year. My two boys had about 10 minutes to warm up with Santa.  Thomas was hesitant to speak, but did give him his list and answer a few questions.  He also told Santa what his brother wanted.  This is the first year we even got within 5 feet of Santa and he even talked a little with him.   Little brother, like most 17 month olds, was not thrilled about sitting on a strange man's lap, but we got our first Santa picture with the two of them and no tears.   A huge success for Thomas and our family! 

Gym time

Our school's speech therapist goes way beyond her job title for Thomas.  Since he doesn't need speech therapy, he actually speaks extremely well, he goes to her for one on one help with any area he is struggling with a few times a week.  The speech therapist is currently practicing gym with Thomas in her office.  They practice what will happen in gym for the next week.   They practiced Turkey bowling 2 weeks ago and then had the gym teacher come to her office, so he could practice with them.  We are so lucky that the staff is so amazing and are willing to do this!  Last week Thomas decided he wanted to go to gym and stayed for the entire time and played turkey bowling.  This was the first time ever!  We will continue to do this strategy.  He did not want to stay for gym today, but due to the holiday weekend, he never had a chance to practice for this week’s gym.  We will keep working on this.  I also gave him a red card and green card to take to gym.  Since he sometimes has trouble communicating in this setting, these cards can relay to the teacher whether he wants to stay or go.  He is comfortable using them and did so today.  

So much to be thankful for this Thanksgiving

We have so much to be thankful for this year.  Our family is healthy, my husband has a great job, and we have a great home in a town we love.  Hands down though, the thing that we are most thankful for this year is seeing our little boy come alive outside of our home this year.  It has been a tremendous year of growth for him and through tireless cognitive behavior therapy and OT, he has overcome so many of the obstacles that held him back last year.  I am so thankful that I am lucky enough to be able to stay home with him and help him every step of the way.  It has been a year of hard work on his part and mine, as his advocate, tirelessly doing his therapy for both SM and SPD and keeping up constant communication with his school team.  Everything we have worked so hard for is finally starting to happen.  Hearing him speak with his friends inside and outside of school is the most amazing thing.  I am so proud and thankful for our brave little boy who continues to teach us so much every day.

Never give up on your child.  They are so much braver than you realize.  What seems like an easy task for us, can take extreme courage for someone with SM or SPD.  There are so many times you feel defeated, but never give up on them.  Be their biggest advocate!  You may feel like progress is so slow, but with your love and support, all those baby steps will eventually lead to amazing results and much happier times for your child and family.  I promise you that!

Thanksgiving went great at my relatives' home.  He warmed up very quickly and played with some adults he doesn't see very often.  He talked freely the entire night!  

Thanksgiving preschool show

Thomas has been doing excellent the past week and a half.  He just keeps surprising me.   At his parent teacher conference 2 weeks ago, the child study team and I came up with a few goals and decided that having him do the Thanksgiving show and gym was not a priority.  Since they make him uncomfortable we would not do them right now.  Well last week he ended up having a great week.  He stood up for a song during circle time and also during the Thanksgiving show practice, which before he wouldn’t.  He then decided he wanted to try and do the Thanksgiving show.  He wore a little bell necklace to school that he liked to hold during the practice, so maybe this helped.  (A prop to take the focus off him?) I went and saw him for his Thanksgiving show.  It was very casual, in the classroom, for parents only.  He looked very scared, but he stood the whole time.  He did not sing any of the songs or do the movements, but the fact that he wanted to stand up there was so brave of him.  The rest of the day he was very moody though.  I am thinking it may have had something to do with him trying to hold it together all morning.

A very big step!

Today Thomas took a very big step.  He went to a classmates' house for a playdate with not one, two or three, but FOUR other classmates.  It was his first playdate with this many classmates and the first classmate playdate without me attending.  I was very nervous about how he would do, but he did great!  He has been doing so well on the playground with all of these children and he was excited to go, so I let him.  I picked him up after 45 minutes for this first trial run, but maybe next time he’ll stay longer.  I know and trust the mom and we kept in contact.  He was very happy there.  This is such a BIG step for him.

He also was playing tag on the playground with his group of friends today running and talking to ALL of them. 

We are on our 5^th week of therapeutic listening.

Practicing for the Thanksgiving performance

This week has proven more difficult for Thomas.  The class is practicing for a Thanksgiving show for the parents next week, which is throwing him off a bit.  He has mentioned a few times this week that he doesn't want to go to school, which is new. He didn’t want to participate in gym this week either.  The preschool is having a small Thanksgiving show in the classroom for the parents on Wednesday, but Thomas has not been willing to stand during the songs.  They are not expecting him to do them, but he can’t seem to stand.  We tried making him a helper and giving him a prop to hold, but neither have worked  We gave him a week to give this a shot and then after talking with him, I asked what he would like to do.   He decided that he wanted me to pick him up early that day.  He will only miss the last fifteen minutes of school.  I have mixed feelings about him avoiding these types of things, but right now these four turkey songs are not worth ruining all the progress he has made this year.   We will be picking him up early that day.

I want to be seen & heard... when I am confident in what I am talking about!

This week was Thomas's turn to take home the number jar.  This involves finding a certain amount of things from home, (his number was 8) and bringing them back to school in the number jar.  The person then stands in front of the room and counts out his number of things as he takes them out and talks about them.  He was so excited to do this.  The teacher said that while he didn’t want to count the 8 things outloud, he was “chatting away” about the 8 things he brought!  When he is prepared for what he is going to say he will talk a lot.   We practice show-n-tell the night before and in the morning to build his confidence.  The teacher also gives me the questions she will ask ahead of time so he can practice his answers.  

He is also still raising his hand well and according to the teacher is often standing up while raising his hand to get picked J 

We are on week three of therapeutic listening. 

Weatherman Thomas

Thomas had a really great week this week.  Every week in his preschool, someone new has the classroom job of “Weatherman” for the whole week.  During circle time they sing a weather song and then the weather man goes over to the window, looks outside and reports the weather to the class.  Up until now, Thomas has not wanted to do this, but he has been practicing in the speech therapist’s office and in the classroom with smaller groups.  This past week it was his turn again and on Monday he got up, looked out the window and then whispered it to the assistant.  On Tuesday he whispered it to the assistant  and teacher.  The third day, he said it outloud to the class and boy was he so proud of himself when he got home.  We made a big deal of it and he was so happy!!!  The next two days he said it aloud as well!  He is such a rock star!

Also this week, he participated in gym for about 15 minutes with the aid of his teacher.  Usually he only lasts about 5 minutes before getting upset.  Great week!!

Therapeutic Listening program

Thomas started his therapeutic listening program on Sunday as part of his occupational therapy, so we will see how he progresses with this.  We have been talking about this with his OT for some time and finally were able to secure a used headphone and microchip set.   It does seem rather "new age", but I have read a lot about it and I think it could help greatly with his vestibular processing issues.  It is a 12 week program that involves listening to certain music/sounds selected by your OT for 30 minutes/2x per day.  He can still talk with us, play, and go about his daily life at home while doing this.  Here is the link to learn more about it:  http://www.vitallinks.net/

I figure can't hurt, might help.  All we have to lose is money and we are willing to take that risk to help Thomas.

Tough Halloween-but not why you may think

Our family went to the Halloween parade last night in our town and had a great time.  The kids went in their costumes and Thomas was taking candy from people handing it out, waving, and answering questions.  We were very proud of him.  Unfortunately that night he told me his ear hurt, which I know means an ear infection is coming on.  Sure enough, the next day he had a fever and was in a ton of pain.  He was so sick all day and did not get to go trick or treating or to his party.  I was so sad for him.  He was so excited about this day.  I was also so curious how this year would go, since last year was a disaster, but we’ll just have to wait one more year. 

School vision test

Thomas had a vision screening test at school today.  We got a letter sent home about it a few weeks ago and I completely forgot about it, so I didn’t prepare him for it.  When I picked him up from school, he happily told me that he got his eyes checked today.  'Crap!'  I thought to myself  'I wonder how that went?'  When I opened his backpack there was a slip with three boxes.  One basically said he passed, one said he didn’t pass and one said it wasn’t possible to screen your child’s vision, because of nervousness, shyness, lack of attention, etc.   I was so happy to see that the passed box was checked off!  I know that this time last year it definitely would have been that third box-unable to screen.  I was so proud of him that he did this with the nurse he never even met before and was verbal.  Big progress!

Top 10 things that have helped Thomas become verbal in preschool this year

I have been thinking a lot about Thomas's progress and asking what caused this change. I am confident that 10 things have made a HUGE difference!

1. I had A LOT of meetings with the child study team prior to this school year, so we were all on the same page.

2.  He is in a supportive public school system now with a lot of support staff.
3.  He has an IEP, so everyone knows what needs to be done to help him succeed and are following through with it.

4.  I did an enormous amount of cognitive behavioral therapy work with him and the school this summer to lay a great foundation for this year.

5.  I set up teacher and classmate playdates over the summer and during this school year.

6.  He is one year older and more able to express his fears and discuss his feelings.

7.  I truly am his biggest advocate.  I continue to tirelessly devote the majority of my time to him and
     his therapy.  I also spend countless hours reading books about SM and SPD to better understand his
     needs.
 
8.  I really feel that the open line of communication between his new school and I,  plus the caring, 
    dedicated staff really have made all the difference in how well he is doing now. His teacher is
    awesome! 

9.  We are much, much, much more knowledgeable about Thomas's selective mutism needs than we                  were starting school last year.

10. We discovered Thomas also has SPD and have begun a sensory diet and semi regular OT. 

Standing tall!

Thomas really made some great progress at school today. After two days of standing up for half of the pledge, he stood for the whole thing today while holding his teacher's hand. I brought up the pledge over the weekend and asked him if he thought he'd be ready to stand for the whole pledge while holding the teacher's hand. He was a little on the fence, so I told him to think about it and threw in the motivational factor that if he was ready it would earn him 4 stickers on his chart. This way he could decide for himself, no pressure.

He also did something VERY big today.  He raised his hand when the teacher asked a question at circle time.  This is such a big deal for a child with SM, because in doing this, it puts a lot of attention on them if called on.  Of course he was selected and was able to answer the question.  He was so proud to tell me and the teacher was too.  What a confidence booster for him.  I am so amazed at how much progress he is making this school year.  A complete 180 from last year. 

Overcoming obstacles at school one step at a time

When we met with Dr. E. last week she said something that really resonated with me.  She drew a picture of steps and said "While most children can go from one step to the next, Thomas may need several baby steps to get to the next step. 

As I mentioned before Thomas wasn't standing for the pledge.  In my meeting with the child study team last week, we were discussing whether it was behavioral or sensory.  I honestly don't know what is going on in his little mind, but I truly believe it is sensory related in some form.  I explained the "baby steps to get to the next step approach," to them and it clicked with them too.   Instead of going from not standing for the pledge to completely doing it, we needed to break it down.  I suggested if the teacher held his hand this might help and they suggested that maybe he could stand for a few seconds and then sit down, slowly building to standing the whole time.

I had a talk with Thomas about seeing if he could stand for a few seconds just holding his teacher's hand and he smiled.  He liked the idea of holding her hand and the next day he stood for a few seconds.  BOOM! 

Another one of our goals is for him to raise his hand during class.  So far he is practicing in the speech therapists office and we'll go from there. 

Every baby step is truly building his confidence.  Such a simple concept with very powerful results!

Moving right along

Every October one of our favorite things to do as a family in the fall is go to a little town in Pennsylvania.  We headed out on the road with our pumpkin spice coffees and juice cups to admire the fall foliage along the way.  It is a beautiful drive up there.  It is the perfect fall trip for our family because there is a great play area for the kids, great food for my husband and great shopping for me.  Our first stop is always the kids zone place where the little ones can get out some energy before the adult fun of eating out and shopping begin. 

Thomas has been coming here every year with us since he was one, so it is so interesting to see what play areas he still likes or has grown to like each year.  They also have an gorgeous carousel.  The past 3 years he has only wanted to ride on the bench, preferring this sturdy non- moving piece to the galloping horses that move up and down.  This is our first visit here, since we have discovered he has SPD, so it all makes sense to me now.  Oh how many times we tried to get him on a horse.  Poor him.  Poor us.  None of us knew why this was so hard.  Now that we were enlightened and have been making great progress with OT, I was so curious as to how this would play out this year. 

We didn't want to push the carousel on him, so we started out in the play area in the back.  He played at the water table, in the ball pit, and on the fire engine.  Then he did something that really amazed me.  They had a few kiddie rides, like you see outside an arcade or at a store where you put a quarter in to make them move, and one was a mini carousel.  He jumped right on a horse and wanted it to move.  If you read my post from August regarding moving rides, you know he is not usually a fan.  Today he not only jumped up on the horse voluntarily, but also wanted it to move.  We immediately pushed the button before he changed his mind and he loved it.  From there it opened the door for me to ask him if he wanted to ride a horse on the real carousel.  I was waiting for a loud "No" but instead heard an excited "Yes."  Again before he changed his mind we excitedly made our way over to the big carousel at the other end of the building.

He was a little nervous when it was our turn to get on, but as long as I held onto him tightly he was fine.  He was nervous, excited and proud of himself the whole ride and so was I.  This picture was taken by husband who was sitting on the carousel bench with Thomas's one year old brother who, surprise, refused to get on a horse!  One out of two ain't bad. There's always next year and now I know that one day he will be ready too.  For now I am excited to check off yet another fun thing that doesn't hold Thomas back any more.  Seeing him enjoy the ride without fear and with a smile on his face reminded me of how far he has come and how far he will continue to go!

The little things!

Moms of special needs children know that little things that other parents don't even think about can be huge things to us and our children.  We have made a lot of progress since my last post in July.  Thomas is doing very well in preschool.  He is verbal a lot of the time, which I attribute to our continued cognitive behavioral therapy games, OT and his new very well structured preschool with a teacher who understands Thomas's needs.  After two months of OT, Thomas is now sliding down many slides.   It was amazing to see him go down a slide without me at the bottom or sliding down with him.  This was a big cause for celebration!!

There is one slide though that he hasn't been ready to tackle.  It is a very steep slide, that even I thought was a little scary, on his school playground.  They go on this playground at recess and after school we often stay so he can play with friends and I get to observe how he does on the equipment.  All his friends can go down it and it has been affecting his play with them at times, because he won't go down this particular slide.  He has to go all the way around to the steps.

Thomas and I had a chance to go to his school playground today for a little bit by ourselves.  I thought if we practiced the slide when no one else was there watching, there would be no pressure on him.   Well all it took was going down once holding my hand and then he decided he was ready. I was really happy for him and could tell how proud he was of himself.  He was even climbing up it which takes a lot of strength since it is so steep.  Good proprioceptive work too!  He must have gone down it 100 times after that. Now he is confident on all 7 slides on his playground.  I really think this is all due to his sensory diet and therapy we have implemetned in the past 2 months.  This may not be a big deal to many parents who's children can go down all the slides right away, but for us this was an enormous success worth celebrating.  I could tell how proud he was of himself and I was so proud too! 

Cheap date

So we decided that with all the money that has gone out over the past year, we would not go on an official summer vacation this year.  Instead, we went down to visit my parents, who live at the shore, for a week.  We had a good time and used every opportunity to have Thomas order his meals at restaurants and ice cream at night.  We also spent a lot of time at the beach arcade.

If you have ever been in an arcade, you know it can be sensory overload for even the most tolerant person.  Bells ringing, flashing lights, games talking. money clanging, prizes hanging everywhere you look, kids screaming, babies crying.  For some reason though, Thomas really loves going there.  Granted, he can only tolerate it for about 10 minutes and often shuts down with speaking, because he is trying to process everything, but he really enjoys himself.  One thing that he loves to do before and after entering the arcade, is to sit on the kiddie rides right outside the entrance.  For a quarter they move up and down or side to side.  He particularly loves the truck, jeep and speed boat ones, but don't even think of putting a quarter in it!  He wants to sit in it standing completely still and he is as happy as a clam.  I see parents feeding those rides like crazy and always smile, because it is one of the rare perks of sensory defensiveness.  We save money on amusements, bounce houses and arcade rides!

More SPD books

In my quest to read as much as I can about SPD, I began reading  The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorderand in the process came across a wonderful companion to this called The Out-of-Sync Child Has Fun, Revised Edition: Activities for Kids with Sensory Processing DisorderThis book was just what I was looking for to get ideas of sensory-motor activities we could do together outside of OT.  It breaks activities down by area (vestibular/proprioceptive/tactile, etc.) which is really helpful so you can focus in on the areas that your specific child needs the most help.  I borrowed both of these from the library, but after renewing it a few times, I bought The Out of Sync Child Has Fun, as I knew I would want to refer to it often.  It is a great reference.

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. 

Final child study team meeting

At this point, I have had quite a few meetings with the child study team at Thomas's new school for the fall- one in November of last year, a few in the spring, an interview with the social worker, an in home eval with the school psychologist and speech therapist and now today to make sure we are all on the same page and know what will be occurring this fall.   They are AWESOME!  I know it will be a great school year with how much they are willing to help.  We reviewed all the evaluations Thomas has had by the district and went over the IEP.   The teacher will be stopping by once in July for a playdate and then we will visit her at school a few times in August and help set up the classroom.  She is also going to try and coordinate a playgroup with her, Thomas and one or two other classmates.  We totally just winged it last year with preschool, which didn't fair too well.  We had just started with the SMart Center and had a newborn, so we were lucky Thomas even made it to school.  I know that this year will be different though.  I can feel it.  All the pieces and supports are falling into place and I think it will be an awesome year for Thomas!

The preschool memory book I wish I could erase from my memory!

Today was a really low day for me.  We had Thomas's last day of school celebration and he was very clingy and of course mute.  The parents all gathered in the gym where the children gave their parents their preschool memory book full of all the "happy" times they had that year at school.  Thomas was so excited to show me his, but when I started looking through it my heart sank and I was desperately trying to hold back tears.  If your are a mom of a child with sm you know this pain.  Here are a few of the pictures in his memory book.  Heartbreaking.

Looking toward a better school year in the fall

The past two weeks Thomas has been saying he doesn't want to go to school and is having a very hard time separating from me at drop off.  He is crying and saying he wants to go home.  Usually the assistant teacher has to pick him up and take him over to a quiet area so I can leave.   The circus graduation has been over for a week now, so not sure if he is still having anxiety about this.  He knows it is over, but his mood has definitely changed at school.  Even the director who greets us each day mentioned that he does not seem comfortable lately.   I am frustrated that he seems to be regressing with school.  Definitely not where I envisioned he'd be at the end of the year.  Sad to be ending the school year on a bad note, but he will be starting a new school in the fall.  Instead of worrying so much about this, I going to try and be positive by focusing on laying the groundwork for a new better school year this fall.  

Separation anxiety

Thomas has never had separation anxiety at school and all of a sudden it is coming on full force in June!  After no problems all year, Thomas is having a lot of trouble separating this week at school.  He was crying and saying he wanted to go home when I dropped him off on Wednesday.  When I spoke to the SMArt center they explained that this is usually cause by something else like an upsetting event.  I think most of this is due to this stupid circus show at school.  The teacher did tell me that the director is sitting with him and they are looking at books on the floor while the others practice on stage.  When I picked him up he said he liked doing this.  I talked to the teacher about bringing him in to school an hour later after the practice had ended and this was fine with them.   So we started doing this, but it doesn't help his anxiety.  I am pretty sure we will not attend graduation.  It won’t be pleasant for any of us.   I just feel so sad for him and am not sure how to help, but I know I won't give up trying no matter how hard it gets!

In home observation with school's SP and psychologist

We had an in home evaluation with the school district’s psychologist and speech therapist this morning and it went really well.  They are wonderful and are so willing to work with Thomas.  They were asking a lot of questions to him, which he wasn’t responding to, so I asked if they had any questions for me.  Children with SM sense expectation and it is hard for outside people to understand this.  They are not going to do well if you start asking them direct questions like you could with "normal" kids.  You really can't do a standard evaluation.  They need to feel that the pressure is off them and they can do things on their terms.  Once the pressure was off him, he started talking a little bit and bringing up things that interested him.  they were able to get some of the information they needed by watching him and I interact together.   

On June 19^th we are meeting to review all the evaluations he has had by the district and go over the IEP.  Very excited to work with this school next year!

Hitting some road blocks

Thomas had a pretty good field trip to the park with his class yesterday.  He brought a joke can of nuts that has a snake pop out and showed the teachers.  He was excited to do this.  This attracted a lot of children and he had another panic attack screaming he wanted to go home and crying.  Eventually we got him to calm down, but it affected his mood the rest of the time.  He did say bye and wave to his teacher when we left.    I have tried very hard to engage Thomas in other activities and games with children but it is always met with resistance.   We are hitting a lot of road blocks with him and are feeling very frustrated.   

Panic Attacks

Thomas is continuing to play his games most of the time, but is starting to become more reluctant with them again.  He is also starting to have a lot of what I would describe as panic attacks in the past few weeks.  They are definitely not just a tantrum, because they are very different than when he does not get his way and they are only happening when we are with other people.  They come completely out of the blue too.  I can see the fear on his face and in his voice.  He aggressively pulls at us trying desperately to have us hold him and often screams I want to go home or I want to go inside.   It is quite hard to watch, but also very difficult to handle for my husband and I.  He had one the other day at a playdate.  He had a pretty good play date, but all of a sudden he went into panic mode and started frantically screaming I want to go home.  He could not calm himself down.  We talked about it later, but he couldn’t explain why he was upset.   Then later that same day my aunt came over to pick up something from me and he had another episode where he was frantically screaming and trying to catch his breath.  He was screaming that he wanted to be held and to go in the other room.  He refuses to go in another room without me.  I had the baby at the time and I had to talk to my aunt, so as much as I tried to comfort him, I was unable to help him.  

Now that we are outside more, our neighbors often stop by to talk and these episodes are happening over and over.  Thomas and I have talked about them so much and I am positive that he can’t control them.  He can’t give a reason why they are happening or how I can help them.  He knows how upset they make my husband and I.  Even though I know he can’t help it, we get angry with him, because it is extremely embarrassing and frustrating for us.   He had another one at the park, one with the neighborhood children and one when I went next door to give something to our neighbor.  It is definitely affecting our quality of life. 

The Greatest Show on Earth?

Thomas has been having a lot of trouble at school the past two weeks.  He has been telling me this week that he doesn’t want to be on stage for "the circus."  I had no idea what he was talking about, so after talking with the teachers I found out at school that they have been practicing for their graduation ceremony which includes all of the classes in the school putting on a big circus show (play) as part of the ceremony for the parents.  Great.  

He was really upset about this, so I went in to observe what all this entailed.  My heart absolutely broke for him as I saw how terrified he was going in to practice.    I could see and feel his anxiety and I was so upset that I didn’t know he was going through this every time he was at school.  It is an absolute nightmare for him.  It involves a lot of children he is not familiar with, there is music, marching, and dancing all on a big stage. I made it clear to him that he would not have to go on stage anymore if he didn't want to.  The poor kid was practically jumping in my arms out of fright.  The teachers and I came up with the idea about him being the special helper and helping the teacher grab the props from below as they came off stage.  He planted his feet and wanted no part of this.  The entire time we were in there he was pulling at my pants, my watch, my hair anything he could grab, he was so anxious.  The even bigger problem with this is that every day until June 11^th, they will be practicing this for an hour during class time, so he is going to feel this way every time he goes to school.  I am at a loss as to how else to help him and feel horrible dropping him off knowing what he has to go through with this.  His teacher has to help the children on stage, so there is no one to sit with him.  I am just so upset about the whole situation and don’t know how else to help him with this.  

My heart just broke as we watched all those children having a great time and my little boy is so terrified clinging to me.  Graduation is supposed to be such an exciting day for the children and parents and I don’t even know if he should go.   It definitely won't be enjoyable for any of us, but I also don't want to teach him it's okay to avoid scary situations.  He said last night that he really wants to be on stage, but he can’t.  On his scary chart it is the scariest man, which is the only time he has ever pointed to this :(   I am usually very positive about his SM and our journey.  He has made so much progress and we just push on with what we have to do, but this really has me feeling so sad for him.   

Social Assessment

Today I had a meeting with the school district's social worker to review his social history from birth to present.  We are one step closer to compiling Thomas's IEP.

In school observation

I have had two meetings with the child study team so far regarding Thomas's eligibility for the district's preschool next year.  It is a long process.  This past week the school psychologist came and observed him in the classroom to get a feel for how he was in the school environment.  He has never met her, so she was able to do this without Thomas knowing that she was there for him.  I emailed her to see how it went and she said he verbalized both spontaneously with a peer and in response to questions while he was working with the teacher.  I also had a meeting with the district's social worker to go over a social history with her, so his report for an IEP plan is in the works for fall.

Problems at the park

Thomas has had a lot of ups and downs this week.  After a really great week of playing over 100 games, he had a really horrible play date at the park.  He was clingy and didn’t want to play any games.  He didn’t want to play at all unless I climbed on everything with him and with the baby it was not going to happen so we actually cut the play date short. 

Communication notebook

The teachers and I write back and forth in a notebook to keep me updated every week.  I send weekly updates to his SM doctor and since I only know what Thomas tells me, this allows me to get a better understanding of his progress or regression.  It has been a very useful tool recommended by Dr. E.  I admit I hated asking the teacher to do yet another thing for us, but it is such a useful tool.  As your child's advocate you really have to know how school is going for them and have a very open line of communication with the teachers.  I am sure they get annoyed by me, but somewhere in the middle of this unbelievably crazy journey I truly stopped worrying so much about what other people thought.  I have one goal, and that is to help my son overcome his SM, so I will do whatever I can to make his own journey easier for him. 

In the notebook this week they said, that this is the first week all year that when they line up to go outside or to go to another room, he has gotten in line by himself without needing to hold a teacher’s hand.  He has been whispering answers to them and also occasionally initiating some things.  He likes to help out and is very concerned about the other children.  The teacher said when a child is crying or others are fighting, he tells the teacher that “We better go over there.”  She said he once went right over to the kids fighting and said “What’s going on here?” Ha!  He is quick to help children with things and will explain things to them, but when they ask him to play, he ignores them.

Spot work success

I was able to go to Thomas's school today to help with the spot at school and it went great.  I brought in an eye spy preschool game and had Thomas and two other children take turns identifying objects before finding them.  He did really well.  Since it takes him a few seconds to answer a question, the other child started answering for him, so we had to make sure to emphasize to give Thomas time.  He did answer them though which is huge!  I also took in some flash cards and held up two at a time and asked silly questions.  This really got Thomas laughing and he would actually yell the right answers if I said the wrong thing on purpose.  I.e.  I would hold up a picture of a frog and say, “Does a frog go quack quack, etc.”  He had a great time.  Other children were curious and joined and left throughout and he was fine with it.  When I picked him up from preschool that day, the teacher said he had one of his best days ever.  This just proves to me that they are not doing the spot when I am not there like they are supposed to.  It is frustrating, but I am trying to help when I can.  I have already discussed this with his school for next year and they said they will make sure it will happen, so I am looking towards next year for that.

On the way out I saw his teacher from last year, who was the one who first informed me of the term selective mutism and to just keep it on my radar.  Without her knowledge, I am not sure if we'd been on the path we are on today.  She was telling me how she could see improvements and that I should be so proud of myself for all the hard work I have done to help him.  Not many people get SM, but she does and it is so refreshing!  So many people have no idea how heart breaking and difficult SM is for children and also their parents who are watching their children live in fear every day.  Every day there are so many challenges and it is so nice when someone truly understands what you are doing for your child and how tirelessly you work to be their advocate.  It was just what I needed today!

The best gift I could ask for

Yesterday our town had a town wide yard sale and we were selling.  We thought it would be a great opportunity for Thomas to play his therapy games by being a cashier for the water and snacks we were selling.  There was absolutely no pressure for him to talk, but he knew he could earn stickers on his chart by playing his CBT games.  He did amazing.  He ended up saying hi most times and answering common questions about the price of the snacks and what we had.  He would also say thank you most times when prompted.  We did a lot of prep with him before hand, anticipating questions he might get so he felt confident answering.  Later we even walked around to some houses and if something didn’t have a price on it that he wanted he asked how much it was and said thank you. 

I can see his confidence growing and this summer should be a very productive one.  The place I can really still see that anxiety in his body language and face is at school.  I am going into help with the Spot on Wednesday, because I was able to get a babysitter, so hopefully this will help.  He really worked hard and I think he even surpassed playing 100 games this week.  So proud of him.  Really the best Mother’s Day gift I could ask for!

Mother's Day Tea

Today all the moms from Thomas's preschool class were invited to a Mother’s day tea at school.  He was very excited about it.  It was outside of the familiar classroom in the big hall with the stage, so I was concerned it would throw him off.   I went in with no expectations, which is how I address everything these days.  If he has a lot of trouble and gets upset, we will handle it, if he does well, it's a nice surprise.

He did so great today.  He escorted me to my seat.  I could see he was feeling anxious, because he had this look on his face, so we played I spy while we waited for everyone else to be seated.  Then it was time for all the children to get on stage for their Mother’s day songs.  I was so nervous for him, but tried not to show it.  If he didn’t want to go on stage that was fine by me.  To my surprise, he got up on stage!  He wanted to hold the teacher's hand while they walked across the stage, but once he was in his spot on the end he was okay standing by himself.  I knew how much courage that took for him to do that and my heart broke for how nervous he was, but I couldn’t have been more proud.  He stood very still up there and didn’t do the songs or movements, but that didn’t matter at all.  He wanted to go up there and he did it.  Afterwards I kept telling him how proud I was.  He didn’t want to answer many choice questions with me or others at the tea, but that was fine, because it was a lot for one day.

Scary chart is fully built into our bedtime routine and most things are not scary or a little scary, but he did say that getting on stage was very scary, so we talked about this a lot and he was really proud of himself too. 

A Very Special Playdate!

We had an amazing opportunity this week to have a playdate with another child with SM who also goes to the Smart Center.  It was such a neat experience to see how the two of them interacted with each other.  It was also soooo wonderful to talk with another mom who understood what we were going through and understood how playdates work best with an SM child.  I had talked to Thomas about them visiting ahead of time and he knew that she also went to Dr. E and had trouble using her words sometimes.  A strategy we have learned is that having a planned activity can help with their anxiety and it also gives good opportunities for hand over/take over and choice questions, so we had them make cupcakes together.  The little girl also brought over some of her trains, so they had something to discuss.  Thomas wanted to come to the door to greet them when they arrived, which he never wants to do .  Both of them did great with choice questions and I was really impressed with how willing Thomas was to talk about many different things.  When they left he waved and said bye and said “Thanks for coming.”  He said he wanted to have another playdate with her.   What a wonderful experience for all of us.

Egg hunts and Easter party

We had a really great few days leading up to Easter.  Usually Thomas does not enjoy doing things that involve a large amount of children and especially does not enjoy this when it is mixed with movement, but egg hunts are one of those special activities that involves all of this, but is also for the most part a solo event.  They don't involve talking and no direct attention is falling on them.  Thomas's school had an egg hunt on Monday, where parents come and watch the egg hunt and take pictures.  I was a little nervous for him, as it was one of those potentially overwhelming events.  We talked a lot about it beforehand, as knowing what to expect helps him a lot!  He was paraded around to the start of the egg hunt passing tons of overexcited parents trying to get the perfect picture.  I know having a big crowd around him scares him, but he did very well.  He held the teachers hand and wanted no part of the group preschool picture, but once the hunt started he was pretty excited to find his eggs.  Each child was allowed to pick 12 and he ran around getting his eggs faster than most.  He was very relaxed and was talking a lot to me and his baby brother once the hunt was over.  We sat amongst lots of children and opened his eggs.  He even waved bye to two of his classmates on our way out.  Mommy lost her keys during the egg hunt, so he even had the chance to wave bye to his teacher when we left the second time!

Thomas also had his school Easter party today.  We were in charge of bringing the a book for the teacher to read during the party.  We went to the library and picked out The Great Easter Egg Hunt- a Veggie Tales book that has a musical button to push at the end.  We also brought in Duck! Rabbit! an optical illusion book where you have to guess which animal you think it is.  I read these a few times with Thomas leading up to the day of the party.  I asked him if he would want to push the musical button at the end of the story when the teacher read it.  He has trouble sitting with the group for circle time, so I am always looking for ways to get him involved with the group during this time.  He said yes and was very excited about this, so I informed the teacher of this when I dropped him off.  He had a great time at his party and when I picked him up he said "Mom, I pushed the button!"  It's those little things that add up and build his confidence.  So proud of him.

A preschool that can accomodate Thomas's needs

This year Thomas is at a private church preschool, where they are very caring, but really don't have the resources, experience, or staff to give him what he really needs. This is the main reason why we knew getting in with our school district's preschool this fall was so key! I am amazed by how knowledgeable, caring and proactive this team is about helping Thomas and providing him with what he needs. A supportive school environment in so key to SM success and it is such a breath of fresh air to be working with people who understand and are so committed to doing what is best for Thomas.  That truly is half the battle. As much as you can help your son or daughter outside of school, you really need people in the school who understand how to communicate and work with them.  This understanding comes from an open line of communication between the parent and school.  Sometimes it is overwhelming being my child's advocate, knowing how much responsibility rests on my shoulders to make sure everyone is on the same page and truly understands how to work with him so that he has a successful school year.  At the same time though, it is truly motivating, because I know if I don't do it, no one else will and that's just not an option in my book.

Breath of fresh air!

I had an amazing meeting with our school district's child study team today.  I was very nervous going in, because I knew how much I wanted to relay to them and have them understand Thomas's struggles.  Very rarely does something/someone exceed my expectations, but they certainly did.  They are amazing and so proactive! What a breath of fresh air!!!!  After fighting so much for my son over the past two years and struggling for people to understand, it is wonderful to feel understood.  They want to read and find out as much as they can about SM and want me to send them all my literature, etc.  

The preschool teacher is very open to helping Thomas through the summer too, so I really feel that he will do very well in his new school next year and future years there as he gets into grade school. I will be meeting with the social worker for a review in the next month and the school psychologist will be going to observe Thomas in his preschool setting. He will not know she is there to observe him, as he has never met her, so we thought that would work to everyone’s benefit. Also the speech therapist and school psychologist were open to coming to our house to do some other evaluations, so this will be happening in the next month as well. 

Playdate progress

Up until now, we have been doing all our playdates at home.  This is where we were told to start, because it is where Thomas is most comfortable. 

We got invited to a playdate at a classmate’s house this past week.  After some discussion, he decided that he was ready to go to someone else's house.  I was nervous for him, but he did pretty well there.  He walked confidently up to the house, said hi and played rather nicely.  They had a lot of trains, so that helped.  We are going to try having some more playdates at others houses now.

Birthday parties...UGH!

Birthday parties continue to be so hard for Thomas.  It is such a disastrous combination for him- a bunch of people he doesn't know well, loud noise, a lot of people asking him questions and usually movement games/activities that are extremely difficult for him.  All this leads to a complete shut down and often angry outbursts toward me. 

We had a birthday party for a cousin that did not go very well this weekend.  We got there early and talked about who was going to be there in advance, but he was very upset there.  They had a lady come and do a music program.  We knew this was going to happen and talked about it with him ahead of time.  We told him he didn’t have to do it, but when we tried to get him to sit on our lap off to the side of the group, he had what I can only describe as a panic attack.  He had to go all the way to the other side of the house.  This was very hard because I also had the baby who was very interested in the program.  The entire day was a big frustrating struggle. 

He also just got invited to 2 more birthday parties.  I am at a loss as to what to do, because he already went to one and couldn’t handle it, so he is saying he doesn’t want to go to these.  We are getting invited to more and more things and I am starting to feel like Thomas is beginning to miss out on a lot.  It is so hard as a mom to watch all the other kids having fun while my son is so scared and upset. I hate that he has to suffer like this, but it gives me all the more motivation to keep going with being his advocate and keeping up with our CBT.