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.