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.  

Super Questions!

Part of our therapy is anticipating common questions and preparing Thomas for these.  We have been practicing these and I started calling them "super questions" since he loves watching the show Super Why on TV.  I’ll say“What super questions do you think someone might ask us today at school or wherever we are going. If they ask you how old you are, what will you tell them?” and he’ll shout out 3! Or the answer to any other question I ask. He knows he can get three stickers on his chart for playing the common questions game.  We go over all the questions and he is excited to tell me the answers, but so far when he is asked them at places, he is still not comfortable being verbal or telling me.  He is responding nonverbally with his flashcards or not at all. Hopefully this will change over time.  

Preschool buddy playdate

One of the hardest, but most necessary requirements of Thomas's therapy is to have several one on one play dates, primarily with children in his class.  The hope is that with one on one play, his comfort level will grow with that child and then eventually carry over to the classroom with that same buddy.  This is hard for two reasons.  1.  He doesn't have a lot of friends in the class and other than drop off and pick up, I have very little interaction with these children's parents.  I really have to step out of my comfort zone to ask a parent for a play date.  2.  If they agree, I know that play dates are very hard for Thomas and he often ends up avoiding the other child all together.  Awkward!!!  

There is one child who has a quieter personality that the teachers told me might be a good match for him.  I talked to his mom and we had a playdate with this classmate this week.  It went okay.  We met at a little indoor park for preschoolers that Thomas is very familiar with.  We discussed common questions before hand.  I had him handover the entrance ticket to his friend and then tried to engage them in some activities.  Thomas's friend was very interested in playing with him, but I wish I could say the same for Thomas.  He did speak to him a few times throughout the hour, but he went off by himself every chance that he got.  I kept trying to pull him back in with activities, such as helping us build a tower out of blocks or play bowling, but the more I tried, the more he resisted.  All this while juggling a fiesty 5 month old.  He wouldn't say bye to his friend after the playdate, wave or acknowledge him in anyway.  It is so easy to get frustrated in these situations, and I do, but I have to remind myself that he is not trying to be this way. 

School struggles

Thomas has been making some progress at his 3 year old church preschool.  He is much more comfortable at drop off than when school first started 2 months ago.  He continues to put his folder in the box when we get into the classroom and now picks out the number he wants to hang his backpack on.  He even is hanging it up pretty much by himself.  It sounds silly, but this is a big step.  He used to refuse to hang it up.  He still has trouble being verbal with me in the classroom, but he is quickly starting to play when he enters the classroom.  I see the other boys playing together and he is off trying to play with the teacher's aide, which of course breaks my heart, but I have to remind myself that it's baby steps.  First getting more comfortable in the class then hopefully playing with other children.

This Friday is the second field trip of the year.  They are taking the preschool to the fire station.  Thomas absolutely loves fire trucks and fire fighters.  The old me would be so excited to take him and I would truly believe he'd have a great time, but the new me knows better.  I hate to be cynical but I know exactly how it will go.  It takes Thomas a good hour to warm up in these situations and the trip is only an hour.  My husband has off that day and I asked him to take him.  I think sometimes he does better with him at these things, because he does not have to deal with it everyday and has a new set of patience to offer.  I'll have my husband arrive earlier than the other students, so we can cut down on some of the warm up time.  I'll stay home with the baby and hope for the best.  We'll see how it goes. 

Leader at preschool!

Today when I picked Thomas up at preschool I was greeted by him with my usual big hug.  When we got back to the car and he started to talk, he was so excited.  "Guess what mom?!  Today I was the leader!"  After some questioning, I discovered that the leader is first in line to go out to the playground and for dismissal.  He also got to turn the lights off when it was time for clean up.  He was so proud and I was so proud of him!

School Meeting

As a mom of a child with selective mutism, there are a lot of lows mixed with some really sweet highs.  Sometimes it seems that the difficult days greatly outweigh the good days.  If you are anything like me, you question why things are the way they are and if you are doing enough to help your child.  It is a constant struggle, but when you have a really great moment or a breakthrough, it is all the more sweeter.  Today was one of those days.

I was so nervous about the child study team meeting.  I prepared for it for days, with notes, handouts for each member of the child study team, etc.  I knew that having Thomas enrolled in the school's preschool next year was crucial to his later school success.  Now I had the task and pressure of convincing this team.  I met with the school psychologist, the SLP and the social worker.  To my surprise they all had done their research on SM prior to our meeting and blew me away by how much they understood and were willing to work with Thomas. 

For those of you dealing with SM, you know all too well, that it is not well known, often dismissed as shyness, and misdiagnosed!  I just have to say this meeting was such a breath of fresh air.  Ahh to feel understood!  I went in with the stress of wondering how I would communicate the tremendous depth of SM in a few short minutes, to being able to focus specifically on Thomas's strengths and weaknesses and our goals for him.

What came out of our meeting:

1. We are going to put an evaluation on hold, because they would recommend immediately placing him in the school's preschool.  Although this is what I wanted more than anything for next year when he is four, we all felt that pulling him out of his current private preschool in the middle of the year would not be a good idea.  He will be evaluated in May or June before the end of the school year.

2.  He will definitely be eligible for the school's preschool next year!!!!

I left feeling great and so proud of myself for setting up this meeting and working towards what is best for my son.

I rarely toot my own horn, but today I feel like a kickass mom and I'm gonna run with it.

Child Study Team meeting

One of the things Dr. E wanted us to do was to set up a meeting with our school district's child study team to have Thomas evaluated for an Individualized Education Plan (IEP).  This basically means that they would evaluate him in his current school environment and would then provide a detailed plan that the teachers would be required to implenment.  Since he is only in preschool this was not my main objective for meeting with the child study team.  Sure an IEP would probably help, but his teachers have been given written strategies and are implementing them well.  Plus I just paid for the SMart center to have the school consult as discussed in my earlier post.  I think that they are doing an amazing job and I am so grateful for what they are doing with Thomas.  I am very pleased with his progress, so I don't want to go from the parent who is an advocate for their child to being "that parent" who wants everyone to go above and beyond for their child.    There are 12 other children in the class.  It's a fine line and I am well aware of it.

My main objective was to discuss getting Thomas into the school district's preschool program.  It is for special needs children first and then there is a lottery whereby a few more children without special needs may attend.  This was important to me for three reasons:

1.  This preschool was in the same school building Thomas would be in for the next 9 years (K-8th grade); therefore he would be familiar with the school prior to entering kindergarten.  A familiar routine, which is so key to him.

2.  The preschool is exclusively for the town residents and so everyone in his preschool would be transitioning to kindergarten with him.  He would know several of his classmates before kindergarten; therefore decreasing warm up time because of familiarity.  So important!

3.  With all his classmates being from the same town, it would be so much easier to arrange playdates and get to know the other families; therefore increasing his comfort level in school.  Again essential.

It would be perfect!  I just pray that they are receptive and have some understanding about selective mutism and how he should definitely qualify for the preschool.

Waving progress

Thomas is now starting to wave to some people who are directly waving to him, where before he wouldn’t do this.  We practice all the time waving to inanimate objects like trees, parked cars, fire stations, etc. to help him get comfortable with the act of waving.  Then we worked up to waving to people when inside the safety of a car where no one knew he was waving.  This helped tremendously. He waved at the little girl across the street today who said hi to him and also to the trash man who waved to him yesterday.  Very exciting!

Sweet Success!

We had a doctor's appointment for Thomas's baby brother this morning and I also decided to schedule his flu shot for the same appoitment.  Not sure if this was the best idea, but luckily my mom was up to help out with all that is involved with getting 2 boys to the doctors. 

Thomas likes to know "the plan" with everything, so I always tell him what we are doing for the day.  I told him that he was getting a flu shot that day.  This way he would be prepared for what was coming and have some time to process it.  Surprises do not go over well with him.   He was very fussy and difficult in the office, which is the norm, but the nurse was great and got him distracted with some crayons and paper while baby brother got his check up.  When it was time for Thomas's shot, they gave us the option of the nose spray or shot.  Knowing him, I knew getting that stuff in his nose might prove ten times harder for the nurse than a shot, but I knew it would hurt him less.  I knew Thomas would prefer that though and since we had the option, we opted for the spray.  Just as much drama insued though- hysterically screaming and crying, but we got the job done for one more year.

On the way home, I told him we could stop at Dunkin Donuts for a special treat.  I told him we were going to try to place our own order, which he has never been able to do, but we are working on it.  We stood back and I read him all the donut choices until he chose one- a pink frosted donut with jimmies.  We went over what he would say several times, so he felt prepared.  We got in line and when it was time to order I said, "Thomas which donut do you want?" and instead of the blank stare and silence, he said very quietly, "The pink donut."  The man had trouble hearing him, so I said can you say it again and he did.  This time the man heard him.  He handed Thomas the bag with his donut.    Then the cashier asked him for a high five and he gave him one!  What!?!?!!  What just happened!?!  This may not seem like a big thing at all to some who do not understand selective mutism, but both of these things are HUGE!!!   I was so proud.  SWEET SUCCESS!

Update on Scavenger Hunts

So the scavenger hunt game has been very effective for Thomas and so we are doing them everywhere - the aquarium, Target, home depot, etc. We have done two scavenger hunts in the past couple of days and Thomas has responded verbally each time. At the start of the scavenger hunts, he was whispering to me, but after the second or third item he was mostly saying it to the person. If we rehearse and he knows what to say, he is very confident in doing this. I didn’t even have to say “Did you get that” because he was loud enough for the person to just respond. He did bridge down to nonverbal when we got to the checkout and the cashier asked him some questions he wasn't prepared for. I have started to go over some common questions with him that he may be asked, so that he will feel more comfortable in these situations.

It's funny, because we are really getting to know the workers at Shop Rite and other places we frequently visit for our games.  We try to find different people to ask, but it is getting harder as we do them more frequently.  I am sure they are probably thinking here comes that crazy lady again who is making her child play these weird games, but I can honestly say I have stopped concerning myself with what people think about any of our cognitive behavioral therapy anymore.  I have enough to worry about!  As long as I know it is helping my son, that truly is all that matters to me.

Halloween Headaches

Halloween was very challenging this year, as I thought it might be.  Any change in routine is never good for him.  Thomas had a Halloween party at his school and parade.  We talked about it in advance of the day and I made sure we were the first people at school that day.  He was excited to wear his costume, but as soon as we got in the classroom, he wanted everything off and threw a huge tantrum.  He just kept saying “I don’t want to wear it.”   There was a hallway parade that the parents all watched.  Picture a very tiny corrider crowded with people.  I knew this was not going to go well.  He would not walk with me, so his teacher marched him around with no costume on.  

Special things like this that are supposed to be fun are always a disaster for him.  He didn’t want to stay for the party afterwards, but after some coaxing he decided to stay.  I just took his costume home with me.  He was very happy when I picked him up and had fun at the party.  There are a lot special events on the school calendar where parents come to see the kids doing things, i.e. Christmas concert, Mother’s Day party, etc. and I just don’t know how to handle these things.  He completely shuts down.  I don’t know how to explain it to parents who are asking me if he is okay and it is a very frustrating experience for both him and I. 

He still didn’t want to wear his costume when it was time to go trick or treating that night, so I went to the attic and dug out his 2T cookie monster costume from last year.  I couldn't help but laugh looking at him in this dirty outfit with blue furry legs that ended right below the knee due to a year of growth.  It made him happy though, so we went with it.  During trick or treating he was hesitant to go up to the houses, but after a few he was getting more confident.   We played some of our therapy games during the process.  We did our street and he was ready to come home.  He didn’t verbally respond to any choice questions during trick or treating, but would nod his head yes or no to answer questions people had for him. 

Working on our waving

Thomas and I went to the Halloween parade tonight in town.  I thought it would be a great opportunity to practice the waving game, and it was.  After a bit of warm up time, I did get him to wave at quite a few people in the parade.  At first, the wave was very small and close to his body, but then after a few times and some encouragement, he was waving in a way that the people could see him.  He also waved bye and gave a thumbs up to our neighbor when they were leaving our house the other day.  This is definite progress, as he usually won’t wave to people close by.

Scavenger Hunts

After our first follow up visit with Dr. E. at the SMart Center, we were given some new games to play.  One of which is a scavenger hunt.  In short, this involves printing out a picture list of a couple things we are looking for at a store, i.e. rice or crackers at the grocery store.  Then when we get to the store it involves me approaching a worker and telling them we are looking for something and then letting Thomas give a nonverbal response (pointing to the picture of what we are looking for) or a verbal response (saying the word "Rice.")

My first thoughts when I heard of this game and what we had to do was:

1)  This is going to look so weird to the workers we are approaching
2)  I have an infant and a three year old.  Shopping is extremely difficult with these two, let alone throwing in a scavenger hunt!

We made the committment going into this though that we were going to give this our all due to the time, money and quite frankly desperate hope that we were investing in the Smart Center. 
 

So the scavenger hunts began.  They were not easy.  They were awkward.  They were a huge pain to compile in addition to a grocery or other shopping list.  But they started working.  That is all it took for us to get hooked.  On our first trip to the grocery store we did a scavenger hunt with 5 items.   Thomas picked the item we would look for and we rehearsed what he would say before each encounter when I gave him two choices and told him to “tell me” as a verbal intermediary.  When we asked the first person for an item, he would only point to the item, but after that he started to tell me quietly.  By the time we got to our last item, I gave him the two choices and he turned right to the man and said “Cookies.”   This is the beginning of him realizing it's no big deal for others to hear his voice!

Let's be honest!

Let's be honest to start off- This first year of posts in my blog (2013) were not written in 2013.  As a mom to a newborn and a 3 year old undergoing sm treatment, a blog was the furthest thing from my mind!  I started this blog in 2014 as a private journal just for myself to keep track of all we had done and all Thomas had accomplished.  I realized that so much of what I was writing could benefit so many others going through the same struggles and questions, that I felt I should share it.   It is not perfect.  You will probably find some grammar mistakes or run on sentences along the way, but my hope is that it can help other children and families going through the process.

My husband, Thomas and I were so nervous but excited to arrive at the Smart Center for our initial consultation.  Make sure to click the "Read First" tab on the homepage if you haven't already, as this will give you more of a back story as to how we first realized Thomas had sm and ended up at the SMart Center.  It was a 4 hour evaluation, but we quickly found out that the therapy is primarily done outside of the office and falls on the parents to implement.  This was overwhelming, but to a mom of a newborn who was already so frazzled, I had no idea how I would do it all.  We received so much information, packets, game ideas, handouts, etc. that I thought my head would explode.  I would find out that overtime a lot of it becomes second nature, but there is so much involved with successfully treating sm.  We were paying A LOT of money for this evaluation and future monthly consultations, so success was our only option.  Having a newborn and going through sm treatment for my oldest was extremely difficult, but you are always stronger than you think you are.  It can be done if it's important enough and I have a strong faith that helps me through.  I ate, slept and breathed sm cognitive behavioral therapy for the first year of treatment.  I became my child's advocate and worked with him everyday.  There are so many joys, frustrations, fears, celebrations and questions along the way, but I have never given up and my son has benefitted immensely from this.  This blog is our journey.  I hope it helps you and your family and feel free to send me a message anytime!