Starting soccer

I have to be honest, I was extremely nervous about signing Thomas up for soccer and did not think it would go well.   It pretty much encompasses everything he fears- lots of movement, jostling, coordinated drills, etc.  Are we crazy!?!?  He really had no interest, but my husband and I want him to atleast experience different sports before making up his mind that it wasn't for him.  Soccer is THE sport in our area.  Most of the children in his school are involved with soccer.  Not only do they start at 4 years old, they play year round, do soccer clinics and often join travel teams.  We felt that this was the last year that Thomas could join the recreational league before he got to age where it started getting competetive.  I was so on the fence about whether this was a good decision or not that I literally signed him up just a week ago.  I am very protective of him, but I am very much of the mindset that he needs to be pushed out of his comfort zone to really experience life and grow.

All week he was saying he didn't want to go, but we stayed positive, practiced kicking the ball around with him and listened to and acknowledged his fears.  We made it clear that as long as he tried, we would be proud.   He knew that if he tried, he would also be rewarded with getting to watch a Star Wars movie later in the week with dad.  (He loves Star Wars and is working his way through the movies)

He had his first practice tonight.  We did some OT calming exercises, skin brushing and deep massage beforehand.  We got there early so he could warm up.  He was very reluctant at first, but we used humor to get him kicking the ball.  Humor really works with him.  His coach is great too, which makes all the difference.  I was shocked when he was confident enough to join the team for some drills.  He had trouble with some, but tried a lot of them.  He was doing very well, until they were split into teams for a scrimage.  He froze and did not participate in this, but overall I was thrilled with what he was able to do.  Again really trying to focus on what he did do, rather than what he didn't. All the other parents were talking and relaxing and again we look like the overbearing parents, because we need to keep helping him get back on the field, but it was worth it.   The fact that he is out here amongst these kids trying soccer is nothing short of amazing to me.  He has come so far and is braver than he will ever know!

I spoke too soon- Wrinkly toes

I knew that having everyone happy at the pool was just too good to last, and it was.  Liam is back to not wanting to go in the pool.  Took him today and he refused to go anywhere near the water.  I was so confused.  What happened?!?  He didn't want to get out the last time?  After a half an hour of unsuccessful attempts to get him to come in, he finally yelled that he didn't want his toes to get wrinkly.  Seriously.  We stayed in the pool so long the last visit that his toes were wrinkly and I had noticed him trying to rub the wrinkles away.  I had no idea it bothered him that much.  He's back to camping out at the sandbox again.  SMH!

One big, happy swimming family!

There was a break through with Liam in the pool today.  He went in and really enjoyed it!  He was kicking and having a great time.  So what changed?  We think his fear of the filter was holding him back, so we spent a lot of time showing it to him and "feeding" it leaves from the pool.  He still gets upset about his bathing suit being wet, but it has been so hot that it dries fast.  I think the fact that the water is so warm now, because of the 90 degree days, has made a huge difference too.  We finally all like the pool with two weeks left to enjoy it :)

Finding an ally

If you have been reading this blog for sometime, you may remember that back in April 2014, we had a special playdate with a mom and another child who had SM.  We have kept in touch and have seen each other at a sm camp, but live a good distance from each other and have little ones, so it has been hard to visit more frequently.  We decided to get together again this summer and today was the day.

What a difference two years make!  They have both made incredible progress with their SM and were easily able to start communicating with each other and each others mom quite quickly.  Thomas usually takes a good amount of time to warm up to a new child, but they went off playing together and really seemed to get each other right away.  Thomas didn't really remember meeting her before, as he was really young, but we explained to him that she also sometimes had trouble using her words and that she also saw his doctor.  He had a lot of questions and was really excited for our visit, maybe in part because he knew she was similar to him?

SM can be such an isolating thing for a child and their caregivers.  I know I have said it before, but to have another mom who totally understands exactly what your child has and is going through is priceless!  You don't have to explain anything or worry about what your child may or may not say or do.  They just get it and that is such a wonderful feeling, when your daily life seems to be a constant stream of explaining/justifying/fighting for your child.  I imagine this is why the two of them became fast friends.  They understood each other!

Anyway, we had a great time and Thomas was really sad to leave.  We will definitely continue to meet up for our children and for us as moms.  I highly encourage those working with a sm/spd professional to ask if they can put you in touch with another family in your area that is going through the same experience.  It is such a difficult, emotional journey not just for your child, but for you as the caretaker.  Having someone to talk to about sm, bounce ideas off of and encourage during difficult set backs is so incredibly priceless.  It will truly be so beneficial for your child and yourself!

OT homework

We had a great OT session today.  Thomas quickly warmed up to his new therapist and they were able to get a lot done in the hour alotted.  We brought a prop (toy of his choice) to help take the attention of him and it worked beautifully.  I asked the therapist if that was okay and she said definitely.  His toy character explored the gym and bounced around with him.  He was good about putting it down when he needed his hands for exercises.

She did a lot of proprioceptive and vestibular work today and also did something called making bubble mountains for helping with deep breaths and self regulation.  Thomas loved this.  He had a really good session.  He had been swimming all afternoon which is great sensory input, so I feel like he was willing to do more than usual at his session.

We discussed reintroducing skin brushing and joint compression.  We had done this at home for over a year and half with Thomas and eventually stopped, once we stopped therapy.  The new therapist really feels that it would be beneficial to start it up again for tactile and proprioceptive reasons.  I agree and so for the first couple weeks we are going to try to commit to every 2 hours as recommended at first.  It is a big committment, but after a few weeks you can scale back.  Since it is summer and he is not in school the majority of the day, this is the best time to start it up again.  I know it won't consistently happen every two hours, but we will do our best :)

What an amazing article!!!  (Link below)  If you are going through the diagnosis process or are searching for what may be causing your child's abnormal behavior, please read this article.  When we started out on this crazy journey, so many people tried to tell me what was "wrong" with my son.  We heard everything from "he's just shy," to apraxia, to autism.  Our original pediatrician told us it was probably autism and I wanted to scream "Are you crazy!!!"  As a parent trust your instincts!!  You know your child better than anyone and in my opinion, most doctors have none to very little experience dealing with SM and SPD.  I knew that my child was extremely loving, cuddly, tuned into emotions, and verbal in our home and I am so glad I did not accept people's opinions as fact. I think the word "autism" is thrown around so loosely now and people just accept the diagnosis.  Granted for several it is the correct diagnosis,  but selective mutism is NOT autism!
It is hard work to find the correct people who truly understand the treatment your child needs, but don't give up.  Feel free to contact me to learn more about where our child got treatment. 

The Most Common Misdiagnoses in Children

http://childmind.org/article/the-most-common-misdiagnoses-in-children/

Proud owner of a red swim band

Every day Thomas is becoming a more and more confident swimmer.  He is fully going underwater and swimming and jumping in where he can't touch (with me nearby).  He conquered his fear of swimming with help from the swim teacher!  Once he gets past a fear, there is no stopping him.  It's just getting him over it- that's the hard part.   We had been asking him over the past month if her wanted to try for his red band at our swim club.  Basically this is the initial swim test that allows you to be in the 3ft. without a parent.  It involves swimming from one side to the other without touching bottom.  He has done it several times, but the thought of a lifeguard "testing" him was, no surprise, terrifying to him.  We tried it once and he just froze, so we let it go.  Ever since then, I have been thinking up some ways to test him without him knowing- talking to lifeguard manager, video of him doing it, lifeguard watching him without him knowing, etc.

Today, he had swim lessons and I spoke to his teacher about her having him swim to the other end while I got a lifeguard to secretly watch.  We both knew he could do it, so we tried it out.  I had explained the situation to the guards earlier
, who were very understanding and when it was time, a girl sat at a table out of sight from Thomas to watch.  I held my breathe as he swam across.  He did it!  I wanted to jump and cheer, but because he didn't know he took the test, I got his band quietly and surprised him after his lesson.  He was confused, but excited!  I told him the guard was walking by and saw how great he swam across the pool.  "She saw that you could do it and wanted to give you your band."  Other parents overheard and made a big deal about it, which he hated.  He was super quiet until we got to the car afterwards and couldn't stop smiling and talking about it.  He kept asking to hear the story again.  He was so proud of himself and so was our whole family.  It was a goal of mine to have him get his red band this summer, primarily as a confidence booster for him.  He did it!  He is now a proud owner of a red band and wears it all the time!

Standardized Assessments often don't work with SM kids

Thomas and I went to his new OT evaluation today.  He was really excited and was curious about everything in the therapy room.  I forgot to bring a prop for him, but luckily they had a ton of beanie babies and he quickly grabbed one of them.  Having a prop is a strategy we use to take the focus off him and onto the object, which works wonders.  We began to comment on how fast his beanie baby went down the slide, jumped over things, etc.  After a few minutes, Thomas began climbing on the equipment as well.  The OT and I discussed letting him warm up first and this helped a lot.

After about 15 minutes, he was very comfortable, so she decided to try her first evaluation.  She put a line of colored tape down the center of the room and asked if he could walk across it.  He completely froze.  The attention was now on him to "perform" and I could feel his anxiety.  I have learned through his therapy that a sense of expectation causes him to shut down.  He can sense it and he gets extremely nervous.  Familiar with these behaviors, the OT changed gears and set up a trampoline in line with a crash pad and pop out tunnel.  She asked if he wanted to play on them.  By this point though, he was already in shut down mode and stood like a statue.  I could tell he was dying to try it, but he was too nervouse to try in front of her.  She felt it too and decided to leave the room for a minute.  No sooner had that door closed, he was jumping on that trampoline, then onto the crashpad.  When the door opened again he stopped.

It was clear that standardized assessments were not going to work yet.  The key to this though was the OT understood this.  She didn't push it and just decided to evaluate the best she could through play as he developed a relationship and trust with her.  I started throwing beanie babies for him to catch over the crash pad and as soon as he felt the pressure was off, he was back to running all over the place.

Through lots of casual play together that was on Thomas's terms, she observed a lot of things and asked me a lot of questions.  By the end, he was comfortable enough to do a few gross motor assessments with her.  Our plan is now to have an ongoing evaluation over time, as standardized evaluation assessments in an alotted time just don't work for children like Thomas.    This is the reason why I feel our only option is an OOP provider who specializes in OT with these types of children.  This OT gets this, because she works with kids like him all the time.

"Focus on what I can do, instead of what I can't!"

Thomas went to Vacation Bible School at our church this week and I helped out.  It is rare that I get a glimpse of him in a "classroom" type setting and so of course I was curious as to how he would interact.  As moms, I feel like we are always the first to defend our child, but also can be our child's toughest critic - not in a mean way, but just because you want the best for them.

He did an amazing job speaking and talking with the other children, but he has a lot of trouble with the singing and coordinated movement activities that are unfortunately a HUGE part of every damn kid activity.  There's always dancing, silly movement and songs, because most kids love that stuff.  My heart absolutely breaks for him when I see him standing stiff as a board at the back of a group of carefree, excited kids singing and dancing their little hearts out.  It is part anxiety, part sensory related, but it is just a mother's instinct to want to help him.  I went over and stood next to him a few times that week to do the movements.  I could feel his anxiety, but could often make him laugh and take the pressure off him by doing some silly things.

At dinner tonight, we were talking about the day and I mentioned to my husband that Thomas had a good day, but had some trouble with the songs at VBS.  Thomas quickly jumped in and said "Yeah but I did try and I clapped for the one song!"  He was right!  Although he didn't come right out and say it, it was like he was yelling, "Focus on what I can do, instead of what I can't!"  And he is absolutely right!  Why didn't I say that instead!  I was so focused on what Thomas wasn't doing,  that I didn't celebrate what he did do, which was a BIG accomplishment for him.  I made sure he knew how proud I was of this that night and I am now making a much more concentrated effort to focus on all the amazing things he is doing instead of getting caught up in the things he can't do yet.