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.