Highs and lows as a mom of a child with SM

Being a parent of a child with SM can be extremely isolating.  It is impossible for people to truly understand what you are going through.  It is heart wrenching, stressful and frustrating all at the same time.  Children with SM do not have any physical traits that scream "Hi, I have a disability."  While I am extremely grateful that this is not the case, it also makes it very difficult for people to even understand what your child or you are dealing with on a daily basis.  It is not a disorder that is well known like autism or that there are continuous fundraisers or celebrity endorsements for.  The amount of times I hear "Oh he's just shy"  or "He'll grow out of it." is too many to count.  My family is thankfully so supportive and understanding, but my in-laws still question me about his therapy and why it is necessary.  I cannot tell you how frustrating it is to have people in your own family doubt what you are doing to try to help your own child.  They are convinced he'll be fine and that he is just shy.  It makes me want to scream.  Unless you live it, you just don't get it!

Anyways as a mom of a child with SM, there are incredible highs and incredible lows.  There is nothing better than helping your child break through a barrier of fear.  When Thomas started waving and speaking in stores, it was incredible and such a huge high.  If you are a parent of someone with SM, you know though that you will fall from that high eventually and probably sooner than later.  Just when you think your child is doing so well, there are the inevitable set backs which unavoidably just feel like a punch in the gut. 

Today was one of those days.

I took Thomas's folder out of his backpack after school today like always.  They usually have a craft in there or something informational for the parents to read or sign.  Today I pulled out a cute pink valentine card that Thomas had decorated.  Inside it said "I love you to pieces."  It was very sweet, but like most preschool presents I receive, they always put a picture of your little preschooler on the front for you to remember how happy and cute they were at this age.  Well, on the front of my son's sweet v-day card is a picture of him looking completely emotionless and miserable.  I tried to hold back tears as my son presented me this card he was so proud of.  It looked like all his preschool pictures from last year before we got treatment.  We've made a lot of progress this year, but this picture is just a loud, obnoxious reminder of how far we have to go. 

I'll hang it on the fridge for a few days to show him how much I love his craft, but then it will be put away, not to be looked at for a long time.  Sad, but true. 

OT evaluation

Thomas screens for sensory processing issues, so we decided to get him evaluated by an OT.  He has a lot of sensory defensiveness when it comes to movement within a group and sitting in circle time. 

The OT evaluation was very difficult for Thomas.   We talked about it a lot before we went, but he was very anxious there.   They were aware of his SM and I thought they handled everything very well.  When they called us in he was in good spirits, but they led us to the gym where the toys/exercise things were and he planted his feet and refused to go in.  He was screaming and saying he wanted to go home.  The gym wasn’t loud or crowded, but something about it scared him.  After a few different attempts, the therapist brought some toys to a small room where he played while I discussed things with her.  He would not cooperate in any way.  He refused to stand up and do certain things, so she wasn’t sure how to evaluate him.  She said it was very clear that anxiety was the big issue and the need for control, which we already knew.  I told her we were doing CBT with him.  She thought he seemed to demonstrate more limitations due to anxiety rather than sensory given that he accepts sensory input in the home environment or when he has control.  Although she said they would be able to help him with things like movement which he has difficulty with in a group, it would require his participation in the gym and felt she didn’t want to push him to do things and cause any disruption in the progress he has been making.   She had her supervisor come in too and after observing Thomas doing his own thing and asking me questions, they didn’t feel he had any major sensory issues and didn’t believe he would benefit from their therapy at this time.  I did not agree.  They gave me some ideas to work on at home. 

Yes, I was disappointed that things didn't go better, but after being in that waiting room and seeing some of the other children who had physical diabilities waiting to go into PT, it put things into perspective for me.  Yes, we struggle every day with SM, but there are so many worse things out there that other children and parents are facing. 

Progress

Thomas is continuing to make progress with his CBT goals pretty rapidly, especially over the past few weeks.  He now feels pretty comfortable placing his order wherever we go.  He is continuing to wave when he feels in control.  He also started answering common questions this week with a verbal response for the first time!  He did this twice, so we’ll see if it continues.  We had a repair man come to our house and he asked what Thomas’s name was and when I gave him two choices he gave a verbal response to him!  The same thing with his age.  Also when we took him to his OT evaluation yesterday, he answered the same questions and also talked a little about his brother once he warmed up. 

One step forward, two steps back

As a parent to a child with SM, there are a lot of emotional highs and lows and the journey always seems to be one step forward, two steps back.  There are days when everything seems to be going great and progress is being made, but while you are riding that wave of success something inevitably will knock you down and it doesn't take too long.  Today was one of those days.

I had given the teachers a notebook to write in after each school day to let me know if Thomas did particularly well in one area or any struggles he had that day.  His doctor recommended this and although I know it's annoying for the teachers, it will be very useful to know what we need to work on.  I feel like it will give me a better sense of what is going on in the classroom, as I really don’t know much.  Thomas talks about school, but he's not going to say "Yes, mom I initiated conversation today" or "I am doing great at interacting with the other children." So after about a week or so, I collect the notebook to read and then return it. 

I got it back today and was excited and nervous to read it.  This is what I got from it so far:  Thomas
is talking a little bit in class and participates in a lot, but the teacher said that children are starting to ask why he doesn’t talk.  I am happy with how they dealt with this, but it is so sad that they don’t know the real Thomas.  They also said he stands under the slide when doing some outside activities and refuses to participate in a lot of activities that involve movement.  This just kills me.  I can just picture him standing under the slide all alone wanting to participate but paralyzed with fear.  Thomas loves to be silly and is constantly on the move.  I know he wants to join in, but he just can't.  It makes me sick.  All I want to do is to get him through this.  Children should not have to be paralyzed by this type of anxiety at such a young age.  That is why I am so dedicated to his therapies, because I am determined to make sure that he does not live like this forever.

We start OT next Thursday on a regular basis, so I am very interested to see what they have to say about his sensory defensiveness.  Although we may get knocked down, we'll continue to get up and try again and again and again.

The flood gates are open!

Now that we have broken through Thomas's fear of waving to people and having him see them wave to him, he wants to wave at everyone!  We took a walk the other day and he waved to 11 different people along the way.  He would get upset when someone wouldn't wave back.  Ha!  The irony!  If you are a parent of a child with SM, you truly appreciate the little things that so many other parents take for granted.  A child waving is usually an everyday thing, but to see Thomas actually using his hand to wave was amazing and truly made my year already!  There are so many struggles with this disorder, but watching your child over come a fear and break through that barrier that has been holding them back is truly such an amazing feeling!

We are waving!

Children with SM often have a lot of trouble with greetings- Hi, Bye, etc.  There is pressure from an early age to say hi or wave and the pushing of this creates anxiety and resistance.  Thomas would never wave to anything, let alone a person.  When we began our cognitive behavioral therapy back in August, we were encourage to try waving at inanimate objects and build from there.  We were not discriminatory in our waving in any way-LOL.  We waved to fire hydrants, doors, bushes, trees, birds, cats and then moved onto buildings that would probably have people in them.  For example when we went by a fire station or police station, I'd say lets wave to the firefighters.  Since Lucas couldn't see them, this made it much easier for him.   First we would do it from the moving car where he felt safe and later at closer distances.  I'm so proud to say that today he waved to his first adult up close.   He was okay with them seeing him wave and liked when they waved back.  He will not respond to a wave hi or bye, but he now seems to be getting comfortable being the one initiating it.  This is brand new for Lucas.  It usually helps to remind him that he can get a sticker for playing the waving game.  I just put him on the front line by holding him up to the counter of places and he is starting to wave.  He waved to the cashier when we were checking out at CVS and also up close with the librarian today.  HUGE progress!    

Back to school after the holidays

We started back at school this week and Thomas did really well with the transition back into the classroom.  I was hoping that since he had started waving in other places, he might want to start waving to people at school, but he is not comfortable with that yet.  

I met with the teachers to discuss how he did the first day back and he did call out something during circle time about the book they were reading, so the teachers thought that was great.  He was also talking with the teachers very well when it was just them and us during our meeting.  They informed me that he still won’t sit in circle time, but he sits very close to the circle in a little toy area.  I completely believe this is sensory related, because he won’t sit on any floor with children at school, the library, church or anywhere.  He actually told me the other day that he wanted to sit in circle time, but that there wasn’t “enough space.”   He is also having trouble at chapel time at school where they sit, kneel, stand, fold their hands to pray- any movement.  Dr. E. has told me that she thinks his sm might be stemming from some sensory issues, so I am in the process of setting up an appointment with an OT who deals with sensory processing in children that is near our house and is covered by insurance. 

Hello 2014

Thomas had a really good first week of 2014.  He was in very good spirits and his confidence seemed to be increasing.

He started waving hello and goodbye to people up close when I’m holding him.    He will not respond to a wave hi or bye, but he now seems to be getting comfortable being the one initiating it.  This is brand new for him.  It usually helps to remind him that he can get a sticker for playing the waving game.  He has many games to play as part of his cognitive behavioral therapy (CBT) and this is one of them.  I just put him on the front line by holding him up to the counter of places and he is starting to wave.  He waved to the cashier when we were checking out at CVS and also up close with the librarian.    

Another part of his therapy is being on the lookout for common questions-"What is your name?,  How old are you? , etc.  Thomas and I made some common question flash cards together and he is excited to use them.   He is still having a very hard time with the “tell me” approach, which is part of our therapy and so I think this will help.  We brought them to the grocery store this week, but no one asked any of his questions.  At the end of the trip, he kept saying “How come no one asked me any super questions?”  So I am thinking he is ready to answer them and he will feel comfortable with the flash card aid. 

We are meeting many of his therapy goals for this month, including scavenger hunts using full sentences when asking for things, ordering, waving hi/bye and utilizing his scary chart.

Also for the 1st three nights of 2014, little brother who is now 6 months old slept throught the night for the 1st time ever.  It only lasted those three nights, but it gave us a chance to catch up on a little sleep before the night wakings began again!

2013 .... A pretty awesome year!

New Year's Eve seemed to creep up really quickly this year.  It's weird to think that last week it was Christmas Eve and now tomorrow starts 2014.  Our family has been so busy that time is just flying.  Each day we go through all the motions involved with taking care of two children, the household and ourselves that you blink and another year has gone by.  I am not one who spends a lot of time reflecting on the year past, come each December 31st, but this year I really started thinking about how different our lives are from this time last year.   We are in a completely different place in our lives.

Last year I was pregnant and struggling with morning sickness.  I was working part-time and was really starting to feel that something was "off" about Thomas's behavior.  It's funny to think that at this time last year, he hadn't even started at his preschool yet.  That started in February and after 8 weeks of silence in school (a complete shock to me) and a caring teacher, led us to discover what was going on with our sweet son... selective mutism.  How wonderful to finally understand what was going on with my son and explain many of the questions I had, but very scary at the same time.  What now? 

Our whole future was a big question mark.  How would we get help for Thomas?  How would we afford treatments?  How will he be with the huge transition of a new sibling?  How would we handle all these changes, while dealing with a son with special needs?  Will I quit my job to raise 2 children?  How will we handle all of this?

I am a planner and hate the unknown, but most of these questions were not able to be answered.  We just had to live life to see how they would turn out.  Looking back I can answer them all now.

We got help for Thomas by contacting the Smart Center.   Best decision we could have ever made.  Maybe I should say best google search I ever did, because that's how I found the place that would help us so much.  They were known to be the best of the best.  People came to Dr. E. from all over the country and even other countries.  We were so lucky that she is only 30 minutes away from us!  How would we afford it?  We just do.  We cut back here and there.  Yes, it hurts writing out those big checks, but it is necessary and so worth it.

The transition of bringing a new family member into our house was an adjustment for all of us, especially Thomas.  He wanted nothing to do with him at the hospital, but once we brought the baby home, he did really well.  It took him a long time for him to want to hold him, but now he wants to hold his hand every day and give him hugs.  How will we handle all of this?  Day by day.  The whole summer was a blur, but we got through it.  We went for our first meeting with Dr. E. 2 months after the baby was born.  The treatment is a HUGE committment on both the parents and child.  I was so overwhelmed, but really had to take everything day by day.  I decided to quit my job and stay home with the boys.  It was a really tough decision to leave a job I absolutely loved and worked very hard to get, but knew I needed to be home to help us navigate through our new lives with a baby and a special needs son.  We feel very fortunate that my husband's job provides enough income for us to do this.

This time last year, Thomas was completely mute, frozen and expressionless with strangers and some family members.  Now after only 4 months of treatment, he is handing over and taking things from people, waving to people from a safe distance, smiling and always communicating in some way whether verbally or nonverbally.  He is placing his order at restaurants and asking for things in stores.  I could have never even imagined this last year!  Today during one of our scavenger hunts at ShopRite, he started asking for things in full sentences to the workers.  When we approached a worker, he would say, "Where is the... (fill in the item we were looking for)"  This may seem like nothing to an outsider, but if you know someone with selective mutism this is huge!  A great way to end 2013. 

As for our family, we are doing great.  We have learned a  lot and grown so much over this past year.  We know how to better handle situations with Thomas and are all much happier and less frustrated.  This time last year we wondered what our new baby would be like and now he is six months old, sitting up, eating solids and getting into everything.  Life is good.  I am really excited to see what 2014 will bring!  Happy New Year!

Scavenger Hunt Sentences

Thomas is still enjoying the scavenger hunts and is very good at verbally expressing what we are looking for directly to the worker.   Now when we approach someone he will say a full sentence instead of just the item we are looking for, i.e. “We are looking for cookies.”   He knows asking in a sentence can earn him more stickers on his prize chart than a single word and it's working.  He is very confident when asking for something he has practiced, but if someone asks him a follow up question like "What kind of cookies do you want," he bridges down to nonverbal.