The Shoes

Amidst all my praise for all the progress Roger has made, there is one area in which he has not improved.  It’s his feet.  When he was little, Roger never wanted to be barefoot.  Then, there were a couple of years that Roger would only wear rain boots.  It was when he was 3-5 years old.  Any other shoes would cause him to meltdown.

Sneakers have been really tricky.  We used to be able to do Velcro sneakers.  But, alas, the Velcro starts to be less effective/less sticky and Roger would meltdown trying to reattach the Velcro over and over again.  We decided, since the Velcro were never tight enough, to do lace up sneakers.  He has been using lace up sneakers since he’s been in baseball.  That was how we got him out of rain boots for one day a week — he had to wear sneakers if he wanted to play baseball.  Thankfully, he eventually gave up the rain boots and will wear either sneakers (for school and baseball) or flip-flops.

Every morning has gotten increasingly worse since spring break.  It used to be tying his shoes 2, maybe three times, for him to be okay with them, for the shoes to be tight enough for him.  This morning I tied his shoes five or six times before we left for school.  He was in tears, screaming and hitting his head.  They still did not feel right to him.  I told him we had to leave or he’d be late.  Once we got to his school, he asked me to tie them one last time.  I did.

It’s so heartbreaking to see my son react like that.  When he was younger, he had many more meltdowns and would hit his head.  He outgrew/out-therapied the majority of that.  It’s just the damn shoe issue that keeps rearing it’s ugly head.  It will subside for a bit and then get ridiculous, and then subside, and then get out of hand again.  I am wondering if it is linked to anxiety.  Obviously there is a sensory component but for it to flare up, I think there is something else going on: anxiety, OCD, control issues.  These are the only times he gets violent — recently with hitting himself in the head and in the past (January 2018) with him hitting his head into my back.

Tomorrow he has baseball and I know the shoe tying will be a nightmare in the morning.  He’s also informed me that he is getting a small hole in the toe of his shoe and that he wants to buy new sneakers tomorrow.  Oh boy, sneaker shopping with Roger is a whole other story!

I look forward to Sunday when he can wear his flip-flops.

April

April is an interesting month.  It is Autism Awareness month which really makes me reflect on Roger’s progress, how proud I am of him, and how thankful of the opportunities we have had in the past 7 years.  As Dr. Wooten proclaimed, my clinically diagnosed OCD is really helpful for my researching the best therapies for Roger, school districts, activities, and insurance policies.

Roger’s  annual ARD is in April, which is really apropos.  His goals went from many to few.  He is hitting most of his grade level work and exceeding it in DRA (reading levels) and Istation.  Due to hyperflexion of his thumb, he will remain in school OT for once a week and eventually be moved to once every other week.  We are lucky, since OT is usually the first in-school therapy that is dismissed.  He will remain in speech twice a week mainly due to his lisp.  He will get 30 minutes of handwriting help and 60 minutes of reading comprehension help per week with the special education teacher.

Outside of school therapies, Roger’s private therapies have dwindled to only occupational therapy once a week.  He could use food therapy, since his food is still so limited, but he really does not want to go back to food therapy.  Up until this year, Roger had private therapies 4 days a week.  I really do not wish to add back therapy at this point and really think Roger has worked hard enough (and still is working harder than most kids).  Academically, I found a tutor for Roger in reading comprehension that he sees once  a week at the library.  At this point, he really enjoys the tutoring, especially since he gets to raid the juvenile biography section of the library afterwards!

Besides therapy, Roger is in a few extra-curricular activities.  He has swim lessons (he has advanced from Level 3 where he would not put his head under water up to Level 7 in less than a year), goes to School of Rock, and is in special needs baseball.

It is amazing to see Roger bloom and have such strong interests is music, scientists/inventors, and death.  Yes, my son is obsessed with when people died.  He watches YouTube videos on famous people who have died and asks all about them.  He is full of facts about history.  He is so talkative and loving.  Who could’ve know that my son who had so few words and hated to be touched would grow into such a person?

Simply, my son is extraordinary!

To see tidbits about how Roger was when little, I started this blog when his therapies began.  Start with the oldest blog and work your way through (if you want — I know I may do so just as a reminder).
https://wordpress.com/post/leahbisrael.com/9
https://wordpress.com/post/leahbisrael.com/11

 

 

One week later

This week has been mentally exhausting for me. I had my second neurosurgeon opinion on Tuesday (3rd opinion overall, including last year’s orthopedic surgeon opinion).  All surgeons agree that I should have surgery.  Two told me the time frame was up to me while one told me I needed to have it in 2-3 weeks (all were looking at the same MRIs, x-rays, reports).  I had read that for cervical surgery one should have a neurosurgeon instead of an orthopedic surgeon.  That narrowed my decision to two.

After consulting with my husband, asking on a few ACDF Facebook groups, texting/messaging nurse friends, and writing a pro & con list, I made my decision by Wednesday morning.  It was an incredibly difficult decision filled with much anxiety and sleeplessness.  I didn’t have a “gut feeling” about one doctor as I had with the ulnar nerve surgery.  Each surgeon had polar post-surgery protocols.  That made my decision much more confusing.  I was not only choosing a surgeon but choosing which recovery I thought would be best for me.  One said I would be in a collar for 3 months 24/7, the other said I would be in a collar for two weeks when I was up and about (not while sleeping/sitting).  Thankfully I am OCD, so researching is second nature!

This week I also began seeing a new psychologist. I am trying “telehealth” which is basically skyping with a therapist.  My new insurance uses Amwell, so I thought that with my time constraints it would be an easy solution.  It was the perfect timing with surgery happening in less than four months from now.

The psychologist was a good fit.  She understood having a special needs kid, my stress level and, overall, current situation.  I feel like it was almost kismet that I made the decision on which therapist to use.  The past few weeks it has been suggested to me (by independent sources) that I should use Mindfulness-Based Stress Reduction.  The psychologist also made this referral.  She told me a couple of websites to consult, one being a link to a free MBSR online course. I read the Introduction/Getting Started sections and will, formally, take the plunge this upcoming week.  It is an eight week course which requires 30 minutes of practice time per day.  That will be difficult but I really want to make this commitment to myself.  (If anyone is interested, the website is palousemindfulness.com)

 

The Mind

Despite my sleep deprivation, we had a fabulous Sunday at Fort Worth Zoo.  The weather was perfect and the animals were mainly awake and visible.  The last time we went to this zoo, Roger was three years old and not at all interested in the animals.  His autism made him only interested in fans, the train, and other inanimate objects.  This time he had more interest in the animals but really was interested in the dates on plaques.  His brain must be filled with pages of dates.  According to him, he takes pictures in his mind that he pulls up when he talks about specific people in history.  He will be looking at a book and if he needs to put it down to go to a class or therapy, he says he has to first take pictures with his mind.  It is so interesting to hear him vocalize how his mind works.

Yesterday and today were days to get back into the regular routine of school and work.  I am adjusting better to life in my upstairs office, although I still have hiccups that require almost daily calls with IT.  I am still trying to figure out the balance of housework, Roger’s therapies/classes, trying to exercise, and my job.  I have decided to let some things I wanted to be weekly to go on a bi-weekly schedule.  I think that may help out my stress level.  I have also asked Rob to take over Roger’s after school schedule every other Wednesday so I can deep clean the kitchen and bathroom.  It may not be exciting to you, but it’s been plaguing my mind.

I wish my mind was filled with pictures that I pull up, rather than lists of scheduled activities!

Tuesday, Tuesday

Well, today started out very stressful.  I had a half dozen phone calls with my boss prior to 9:30 am.  I was in a constant stream of work until noon.  I got up at 10 to the hour each hour when my Fitbit told me I took zero of my 250 steps each hour.  After my lunch break, things settled down to a more manageable pace until the end of the work day.  Today, Rob picked Roger up from camp and I got to take a long, extremely hot shower.  I love showers that my skin is pink/red for a good 20 minutes afterwards.

Today we met a reading comprehension tutor at the Lewisville Library.  It is hard to discuss the needs of tutoring when your son is at grade level.  However, as many kids in his class started the year at lower levels than him, they have progressed to his level 6 months later.  Roger is still at the same level he started the school year at.  He is a great reader but I think his downfall may not be comprehension but attention.  His long-term sub thinks it is lack of interest v. comprehension.  How can you teach a kid to be interested, pay attention and focus on books that have zero interest to him?  The only books he is interested in are biographies.

Of course, he aced the tutoring session and she said she would reach out to interventionists in elementary school for suggestions.  She is a dyslexic interventionist in middle school.  She gave me pointers but I told her that he will do these things for me.  He is a people-pleaser for everyone except me and my husband.  At home he fights about doing any homework.  I could never homeschool.  This child would be determined not to learn anything from me.

After his session, we went to the biography section of the children’s library and Roger chose books on Michael Jackson, Bruno Mars, Prince, Louis Armstrong, John Cena, The Rock, and Chuck Close.  The Chuck Close book was one I showed him — truly an amazing artist and a fantastic children’s book.   We also got Roger his own library card and he checked out his own books.  He was thrilled.

Afterwards we had a nice dinner at Red Robin.  That restaurant is never my choice but I know Roger really loves it and he’s been such an awesome boy lately.  I had a nice libation there and two godiva chocolates at home.  That made my mood better.  However, I do not want alcohol or food to be my stress reliever…Although relaxed, I decided to jump on the stationary bike and blog while riding.  Not as yummy, but enjoyable too!

Big Ball of Stress

Achieving balance is what most people are striving for  – or at least I am.  However, at this time in my life, I view everything as stressful.  Work is stressful, cleaning is stressful, trying to find time to exercise is stressful, eating healthy is stressful, getting Roger ready for school/camp/bed/classes/therapy is stressful, playing with Roger is stressful, trying to fall asleep at night is stressful.  BUT doing nothing is the most stressful of all for I think of everything I should be doing.

I think I have forgotten how to relax.  What is the first step?  How do you train yourself to relax?  It really pisses me off when I see others relaxing while I am stressing out.

I also think I have forgotten how to have fun.  It takes a lot to make me smile or genuinely enjoy myself.  It wasn’t until The Dead Milkmen were actually onstage playing that I enjoyed that night.

I genuinely feel bad for my son and my husband.  I want to have fun.  I want to let go.  Will a brain swap work?

Any tips or advice appreciated (just comment).

Happy Friday!

Today has been a good day.  That is, mainly, thanks to a great first session with a new therapist in Denton.  I knew checking her FB and seeing her being a fan of Dawkin’s “The God Delusion” was a good indicator.

One of the issues with therapy is usually when you find you have nothing to talk about.  Today, we gabbed and I could’ve talked more.  One of our topics of discussion was the prevalence of religion and high-maintenance individuals in the surrounding areas.  She understood why, once going to the neighborhood school, my stress-level and anxiety went up.  She said she was told to try a Brownie troop for her daughter and it had many girls in my neighborhood (this was about 5 years ago).  She said the girls and the parents were very entitled and, downright, rude to her and her daughter, especially since they were not religious.  This makes me want to rebel in the opposite direction and show my opposition to the hypocrisy of most religious zealots.  However, that is not my main focus, but it could be a fun side-project.

I am looking forward to my next visit in 10 days.  I woke up excited to try a new therapist and left looking forward to going back.  One cannot ask for more!