What I've learned

Written by Heidi:

What I've Learned:

As a parent to a child with a rare brain disorder I have learned a lot. Leaving aside all the medical information I've had to self teach I also feel like I have studied:

• 101 Therapy: PT, OT, ST
• Design A Safe Room, ( this class is a 2 part, Long Term and Immediate Walk Thru For Visiting)
• Safety During Meals (including dinners out, it's not just forks and knives that are dangerous)
• Rules of Engagement (as RES has limited vocal filters)
• Dealing With The Know It All's (this can include friends, family members, doctors and those complete strangers that tend to pop up wherever)
• SPD 7.0 (I've only gotten to 7.0 as Ethan is 7 and this is an ever changing issue, I'm sure I will have more courses on this one)
• Balancing Act (you can't just be able to juggle 3 things...I thinks it's 5 for him, 3 for me and 10 for things ALL around)
• Organization:  More then meets the eye! ( thought you were organized before...think again)
• Designing an IEP: class includes designing for those that meet... oh wait...none of the check boxes...ok redesigning  IEP's,  
• Siblings:  how to get an older sibling to be kind... ah yes they fight....All the time...I've failed this one...don't ask me how.
• Holiday Decorating: hmmmm can that decorative pillow be a trip hazard...why yes it can!
• Fashion Design Fun: including what to wear to match those helmets and compression suits.
• Falling, How To Not Over React: The toddler Years: this course is developed over a period of time as 75-100 falls a day are the norm but lessen over the childhood years but never seem to go away...
• Parent Body: this includes how to use your arms, elbows, hips, feet, legs, head and shoulders as an ever present bumper for those 75-100 trips and falls each day.
• Knowing You Don't Know It All: how to deal with the unknown as no one can tell you what to expect ( our neurosurgeon on our first visit,  said what the hell is this)
• And yes, I'm aware that most of these courses can be geared to raising an  average child. But those that are raising the Special children, trust me when I say life college becomes a bit different.

Was it SPD or him taking control?

Written by Heidi:

Ethan has been great with therapy. His PT and OT's over the years have introduced many fun and interesting homework assignment and devices for his use.  I have to say we have taken our homework seriously and done everything they have shared with us. We didn't want to look back and say why didn't we try harder for him. My type A personality wouldn't allow that. So with that being said he has excelled in his therapy goals and we continue to set new ones and Ethan has pretty much been an easy going partner in this journey. Until....

A couple of PT sessions ago his PT had decided to change his under garmet therapy pressure suit called a TheraTog which he has worn for 3 years to a different suit called a Spio Vest. He keeps outgrowing the Theratog and it has a few pieces that seem to come undone or loose throughout the day. As he has become older and more active this seems to have more issues at school. 

Prior to her trying the sample suit on he hadn't worn his theratog to school due to school function, pictures, etc. and surprisingly his behaviour in school had been excellent. Being "smart old Ethan" he chalked it up to not needing his 'behaviour suit' anymore. He threw a fit at therapy even running into a closet and trying to lock himself into it. This isn't typical Ethan reaction, he will usually just tell you matter of fact he's not doing it. He also started throwing issues in regards his shoe inserts.
So after the session I was able to talk to him. He was telling me suit was too tight and it's so uncomfortable and itchy and so many other what I classify as SPD. So we came up with an agreement to give the suit a break possibly til next school year depending on how things go since his behaviour prior to not wearing the suit was decreasing in school and then was fantastic for a week and half when he didn't wear it which is usually the complete opposite!  But shoe insets we decided would be a must.
Later I heard him telling one of the neighbor boys notice anything different about me, no special suit!

So I wonder, did he really show some SPD issues or did he work his magic to not wear it because kids have been noticing it....

Hi Mrs. Fescoe, It's Abby's teacher...

Not exactly the voicemail I wanted to receive on a rainy Monday afternoon...

I came back in the house, drenched, and noticed that I had a voicemail. I put it off a few minutes since Abby came home wild, saying she "accidentally cried" at school and her face was blotchy, red and puffy. I didn't get much info out of her so I decided to give her a half an hour to rest and then revisit what had happened.

That's when I picked up the voicemail. I heard "Hi Mrs. Fescoe, it's Mrs. F.... Abby's teacher. I wanted to talk to you about a couple of things. {GULP} First there are a few birthdays coming up and I wanted to give you dates to send in vegan snacks for her {SIGH OF RELIEF}. Second, I wanted to see how her doctors appointments went {SECOND SIGH}. And I also wanted to talk to you about some behavior we are seeing. {SHIT!}

She did some brief explaining but I hung up the voicemail, called her back and prayed I would catch her before she left. I didn't see myself sleeping well if it had to wait until tomorrow. I lucked out and did catch her.

We went through the pleasantries, the party dates, the doctors visits... then got down to business. It seems my previously "model student" has escalated significantly. Meltdowns, temper, screaming, throwing things, obsessing over people and things, perseverating, singing inappropriately, being loud... you name it. I wish I could say I was surprised but we have been here before. In preschool we had to meet with the behaviorist and her OT to completely revamp Abby's behaviors and sensory plan because she was so out of control. Seems we are back to square one.

It's just so frustrating sometimes. I am not naive. I know that raising a child who is "different" will always be chock full of issues. It's because the "issues" have a tendency to ebb and flow that we become the most frustrated. There are times when things are good; her balance seems better, we have no significant falls, her behavior is great, etc. In those moments we *almost* forget that she has lifelong "issues". Because of that we sometimes feel blindsided when it falls apart.

I am not sure how, after almost six years of dealing with these ebbs and flows, we can still manage to be blindsided. Maybe it's my eternal optimism? Maybe it's self preservation? Maybe it's stupidity? I'm not sure but it sure as hell is hard!

So now we will be revamping her sensory/OT plan and it looks like the behavioral specialist will be called in. I am guessing her developmental pediatrician will want to get in on the planning and I am sure there will be another push for meds. Not sure what the outcome will be but I realize we're lucky to already have a team in place.


Posted by Kristen Fescoe

Brushing - Day 1

We officially started using the Wilbarger Brushing Program for Abby. This means that we follow a VERY specific brushing, joint compression and oral input regimen EVERY TWO HOURS while she is awake. Thankfully we will only have to follow this rigorous schedule for three weeks and then we will only have to brush a couple of times a day and then as needed (birthday parties, church, going out to eat, etc.). The thought it that if she will be positively effected by the program we should see the benefits immediately. I can say that she had a much better day today than she had had in a long while. She was very organized (settled) and very tantrum free. Was it a fluke or was it the brushing??? We shall see!

Going on Vacation

Today we leave for a two week vacation at the beach. We are so excited!!! We have been waiting for this vacation all summer. While we leave with tons of excitement we also leave with a little bit of hesitancy. Both of our girls are living with Sensory Processing Dysfunction. They both have very different forms of SPD but one things they both have in common is a general inability to deal with change to their schedule and environment. Traveling, for us, usually means about three days of complete hell while we readjust to a new schedule. We are so hopeful that as the girls get older this gets a little easier. Fingers crossed this is the year!