Great day!

Swimming provides amazing sensory input and Thomas is really starting to love it.  It provides great vestibular, proprioceptive and tactile input.  Now that he is feeling confident at the pool and not as anxious, he never wants to get out of the water.  In the beginning of the summer, he was so scared to put his face in the water, now he is a little fish :)  Even got Liam in today as well up to his belly. I of course bribed him with treats for when we got out, but also distracted him to the fact that he was getting wet by having him try to squirt daddy and Thomas with a water squirter.  He thought it was hilarious and kept him in the pool for about 10 minutes!

Family Hike to end week 2 of camp

A family hike is held in the evening on the last night of nature camp.  Thomas had been waiting for this night for a long time and couldn't wait to show us the places he had hiked and what he had learned.  The day leading up to it though, was very challenging.

Today was one of those days where everything was difficult.  Liam and Thomas fought all day, there were several time outs and it was 95 degrees with humidity.  I was exhausted come 6:00, but we got our hiking clothes, sneakers and bug spray on and headed out to camp.  We were given glow sticks for when it got dark and binoculars to get a closer look at nature.  It was hot and it was a LONG (2hr) hike with a toddler in tow, but both boys did great and it was actually an amazing night and a really fun, therapeutic hike.  It was such a nice family activity and seeing Thomas pointing out plants he learned about, spotting deer and catching frogs was just so special.  Being in nature really has a calming effect on him and our whole family.  By the time the night was over, the boys were happy but exhausted.  Thomas cried the whole way home, because he was so sad camp was over and Liam cried because he dropped his glow stick and couldn't reach it.   I smiled the whole way home though, because I knew we had found something special for Thomas for future summers and eventually Liam when he gets older.  Here were are at Beaver creek on our hike.

Gagging

As if I don't have enough to worry about with Thomas, Liam's sensory issues especially with food are getting stronger every day.  When he was a baby, we thought it was so strange that he would gag when he saw any of us eating long wiggly spaghetti or stringy grilled cheese, but over time I read about sensitivities to different textures/types of food.  Earlier this year we had him evaluated by early invention for it and although they acknowledge it's presence, it wasn't bad enough to warrant treatment at that time.  They gave us some strategies to work on.  Fast forward 5 months later and he is gagging on so many new things.  Over the past month, he will no longer eat chicken of any kind and only things that are cut crisply (no stringiness) or he will gag.  Certain types of breads are causing him to gag as well and just recently waffles.  I have put it on the back burner because I have been focused on Thomas, but after speaking with the pediatrician last week, he informed me that this is a serious sensory issue, because it involves nutrition.  So now we have to make a decision on where to go (in network or OOP) to get this checked out.  As I am typing this, I am getting more and more stressed out about it.  He also has refused swings and most slides since he was 1 and has several of the same sensory issues Thomas has, but on a much smaller scale.   On the positive side, he definitely doesn't have selective mutism!   I think I haven't gotten him treatment yet, because I am in denial.  I have just been hoping since it is not as severe, it will all disappear, but I know all too well that it doesn't work that way.

Will try for treats!

Bribery is an awesome tool to have in your arsenal.  I do not use it often and it doesn't always work, but if the situation is right and I know it will motivate, it works wonders.  Liam let me hold him in the 2 ft. pool today.  Only after I told him I would get him a pretzel at the snack bar (which I was going to do anyway) He agreed, on the condition that I was not to get any part of him wet, which was fine by me.  Just getting him to hover above water was a BIG step.  It only lasted about 10 seconds before he wanted to have his feet back on the pavement, but I'll take it.  He got a pretzel.  Later that day, I was swimming with Thomas in the 3ft. while Liam voluntarily sat in a chair on the side baking in the sun.  How wonderful convenient it would be, if all three of us would swim in the same pool and be happy.  I tried bribery again.  After negotiating, he decided that I could hold him in the three foot and get some of his body wet for a ring pop- SOLD!  I proceeded cautiously and had great success by playing the Motor Boat game with him.  He was laughing and getting wetter than I thought he would.  It lasted about two minutes and he got a ring pop :)  Successful day!

Restarting OT- copay or OOP

After foolishly stopping OT cold turkey when our occupational therapist in Pennsylvania retired almost a year ago, the effects of stopping Thomas's sensory diet are really starting to catch up to us.  We got complacent when things were going well, which is so easy to do with how busy life is.  Even though we learned how to do a lot of the therapeutic activities/exercises that help him, my husband and I decided to start working with an OT closer to us in NJ and address some of the sensory issues that are getting worse.

So we were faced with the issue of do we go the co-pay route through a system that has a broad OT focus or pay out of pocket (OOP) to go to a place that specializes in sensory processing disorder.  We were faced with this decision 2 years ago when we began OT.  Back then we decided to go in network, as I had recently quit my job to stay home full time with our two boys.  (See post from 2014)  They tried to get him into the loud, bright, noisy gym to evaluate him with no luck (surprise, surprise!) Then they just took him to a room and tried some tests to have him answer some questions, which he wouldn't because of his SM and the fact that he just met these people! They told me that they felt he just had anxiety and gave me some worksheets on anxiety.  I was so mad and knew they were wrong.  My mother's instinct was so strong on this one!  We ended up getting in touch with an OOP OT who was recommended to us by Dr. E. from the Smart Center.  She worked out of her house, in a quiet, calm environment and specialized in treating kids with SM and SPD.  What a difference!

So here we are again.  My husband wanted me to explore the in network options, so I did that over the past 2 weeks.  We had two places to try.  After going through two days of back and forth calls with the first place and leaving messages to speak to the correct person, I finally spoke with a woman who collected all of Thomas's background info and insurance.  Two days after that, a scheduler calls me back telling me that they have nothing for 4 months and even longer than that if I need something after school, which I do.  Nope, onto the next option.  I called the second in network place where I had to leave a message for the OT department person and am still awaiting a call back a week and a half later.

In the meantime, I also called the two OOP practices and spoke directly with the director at both places. It was such a breath of fresh air talking to these people who I felt already understood my son, because they work with these types of children day in and day out.  I was particularly impressed with the one facility who viewed treatment as a family centered approach and went over everything in detail with me about the evaluation process to weekly goals, etc.  She even knew our former OT.  That was all I needed to know.  We sent over our eval from our previous OT and scheduled our new eval.

I know the decision to pay OOP isn't possible for everyone.  It is barely possible for us, but I feel strongly that working with someone who truly understands Thomas sensory issues and needs is crucial to his success.  We'll find yet another way to cut back.  Maybe Thomas will just have to get used to those haircuts by daddy :)

Keeping the fun going

Thomas had such an amazing week at camp that he didn't want it to end.  They fortunately had 2 sessions, so we signed him up for next week too!

Nature Camp

I had heard about a nature camp last summer that I thought would be perfect for Thomas.  He wasn't quite old enough at the time, but I signed him up as soon as I could this spring.  It was a hands on environmental education camp for kids who loved being outside and exploring.  It was from 9-1 every day. There would be nature hikes, exploring reptiles, amphibians and mammals, seining in the river and lots of other things like crafts and nature projects.    It wasn't the typical camp with lots of singing, games and running around without structure which was really hard for him.   I knew he would LOVE it.  The only problem was going to be getting through drop off on the first day.

After the Lego program meltdown, I knew we were going to need a solid plan. I first emailed the instructor his "About My Child" paper, which was something we learned from the Smart Center.  Basically it is a brief, but detailed one page paper that goes over Thomas's strengths, his interests, what makes him shut down and how to best interact with him.  As luck would have it, my husband had off the first day of camp, so he took Thomas over a half hour before the camp started.  This is one of the strategies we learned through his SM therapy.  Walking into a bustling room full of campers would be very overwhelming to him.  He needs to observe his surroundings and get comfortable with a place before people arrive.  It is not always possible, but we do what we can.  He had a chance to meet his teacher and helpers and see the "classroom" before anyone arrived.  He also had an assigned seat which helps him know exactly where he needs to be and it was clear that the teacher had read over the paper we had given her and was already interacting with him by talking about Star Wars (one of his favorite things)

A calm, patient teacher is really ideal for Thomas and that is exactly what he got.  He got upset when Dad went to leave, but the teacher was able to get him to go back to the seat with her.  For four hours, we waited and hoped that everything was going well.  When we picked him up, his exact words were "I love camp!"  I let out a sigh of relief.  This is going to be a great experience for him!

Who let the dogs out!?!

Ugh, dogs continue to be such an issue for Thomas.  Even the tiniest, oldest, blind dog that can barely move
sends Thomas screaming in pure terror.  When he sees one coming, he has to cross to the other side of the street.

Dogs are such a part of people's lives and they are everywhere, including several of his friends' homes, so it is becoming quite an issue.  To make matters worse, Liam has developed a fear of dogs now as well (although to a lesser degree)  I think he sees his big brother scared to death and he feels that he should be afraid too, so therefore has adopted those same fears.  At their well check up I discussed this with their pediatrician and he felt that it was necessary to start addressing the issue before it blows up into an even bigger phobia that affects his daily life.  We were advised to do some exposure therapy, starting with a very small, calm dog for a few hours each week and work our way up.  Great, I'll just add that to the list of 1,000 other things I need to fit into each week!  And where am I going to find these dogs?

The most interesting thing is that even though the boys are terrified of dogs, they LOVE pretending they are dogs, watching tv shows related to dogs and reading about dogs.  I think it may be their way of working through the fear?  Liam's favorite song right now is "Who Let the Dogs Out."  Honestly.  I could not make this stuff up!

A breaking point

This afternoon was one of those days that only moms of children with anxiety can truly understand. Thomas started going to a lego program at the community center last week.  I stayed with him for the first class, because he was really scared for me to leave.  This week, I discussed with Thomas that I needed to run an errand while he did his program and that I could not stay.  I took him to the Lego program early, got him set up with his friend and talking.  We had talked about what was going to happen, made a reward chart for each time he was able to stay and had gotten him confident for the class.  I needed to run to the grocery store with the hour I had. 

When I went to leave Thomas just couldn't handle it.  He came bolting down the hallway screaming like someone was attacking him.  He looked absolutely terrified.  After a few unsuccessful attempts on mine and the teacher's part to get him back into the room, I just lost it.  I could see that he was so truly terrified to stay without me and he kept saying he was scared, but in my head I was just so frustrated.  

Looking back on it, I feel like a horrible mother, but the frustration just got the best of me today and I just yelled at him.  I stormed out the building with him following me.  We got in the car and I just cried and cried.  I cried for being so mean to him when he was so scared and needed me, then I cried for my poor boy who for some reason was having this awful anxiety & how scared he looked and then I just cried out of pure frustration and anger.  I was mad at him, even though I knew I shouldn't be.  It took me a long time to calm down and I knew right then and there we needed to start OT up again and start revisiting past therapies.    As a parent I feel so sad for him, yet it is so incredibly frustrating some times.  

Haircut from hell!

So in an effort to save some money and quite honestly save us from having to run yet another "errand," we decided my husband would cut the boys' hair this summer.  It was a trial run.  If he messed up it was summer so no one would care. Thomas has been fine at the kids haircut place for some time now, so we didn't think it would be an issue.  Well, it was an issue.  A big one!  The buzzing clippers just sent Thomas over the edge.  He kept screaming "OWWW" and needed his dad to keep stopping for breaks.  We were doing it on our deck and his screams were so loud that we really thought the neighbors were going to call social services on us!  It took about 45 minutes.  We got through it, but man was it painful on both ends.  I know he has tactile and auditory sensitivities, but it can be so frustrating.  Liam went second and was done in 7 minutes exactly.  I am not sure if dad or Thomas will be willing to do that again :)

Scared of sprinklers

Just when you think they can't possibly be scared of another thing, something else surfaces.  I attempted to set up a sprinkler today for them to run through.  It was a kid's sprinkler that was very low to the ground.  More like a little fountian.  Thomas has never been a fan of sprinklers.  He would tolerate when he was little and last year seemed to somewhat enjoy them.  This year though he wants nothing to do with them or splash pads and neither does Liam. Liam is terrified of them. Thomas verbalized that he doesn't like them splashing his face so I am thinking Liam might feel the same way and is just expressing it as a 3 year old would with a full out tantrum when he gets near one.  Long story short, it was a complete fail.  I feel bad, but sometimes I just want to scream, "Can you just be normal and run through a damn sprinkler like every other kid!"  LOL! Every day is an adventure!