Fun with Friends!

A bunch of friends (Amy with big S and little S, and Adrien with T and J.T.) came over on Monday to play and the boys had a lovely time. The weather was gorgeous, both Summy and Jack happily went down the slide AND rode the tire swing. Jack didn't fall one time. The play date was topped off by my neighbors having some gravel dumped for their new patio which everyone thought was, in the words of Summy, "Awesome."

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How did we get here? (Therapy history and SPD diagnosis)

Linda asked me a great question and while writing back to her, I ended up writing the history of how we got here, so to speak, therapy-wise. I thought it might be a great thing to share with my readers, as it gives you an insight to how we got to the diagnosis of SPD, and what process we have taken with therapy and assessments of the boys. Assessments are a struggle for all families with children who have been hospitalized in the NICU, because you're always waiting to see if your child(ren) have "caught up." Instead of a lot of answers, we found ourselves looking at scores and data that didn't give us a "what to do next."

Here's our story:

My boys were flagged from the NICU for Help Me Grow, which is our state's program for helping families with children who might have additional need. Right out of the NICU they were assessed, and we were forwarded on to our county board of MRDD. Through them we started monthly PT, OT and EI. We also did developmental assessments through the NICU outpatient program at the hospital, which now looking back I realize were only a benefit to our NICU Hospital and its research, and not much benefit to us.

They continued on like this until we moved in April. In Ohio, each county's MRDD has a different system. Our new county has an amazing one which allots each family a budget line for therapy, and another for community classes, equipment, etc. We were given a budget and allowed to pick our therapists, pick anything we wanted. (within reason) AKA< we now had choice!

Wehn we transferred counties, we found out that the old county had not followed up with assessments of the boys like they were supposed to. They had forged paperwork, etc. And they made the new county look "bad" with some of their practices. The director of the new county "took us under her wing" while they re-evaluated the boys and got everything re-written and fixed.

She brought up the possibility of sensory issues, and referred us to our current OT who is AMAZING. She (the new OT) had just gotten back from the STAR institute and had done a mentorship with Dr. Lucy Jane Miller and was wanting to try out her new method of therpay delivery which was based off a system of "bursts" of intensive therapy. Dr. Miller's research showed this method was more effective for the kids and led to greater results. Our new OT did the SIPD (sensory profile) with our kids and we learned they had SPD. A lightbulb obviously went on, and I wish we'd had someone so observant from the get-go. I am now learning SPD is not often diagnosed much before 2 years old.

So here we are. The boys go to therapy with our new OT for 1 hour 3 times a week during which we fully participate in sessions. We incorporate everything at home. We do the brushing protocol 6 times daily at 2 hour intervals. And we do the listening therapy 2 times a day for 30 minutes each. It is overwhelming but I can't tell you how much progress they have made in the 4 (or is it 5?) weeks since they started. We have equipment that should come to the house in the next few weeks including a trampoline, body sox, weighted vests, vibrating "bugs" and we're looking at what more we'll add.

Jack has always struggled with feeding and our OT thinks it could be from his Postural disorder/low tone which also extends to the mouth. I struggled so much with feeding him out of the NICU, I thought he wouldn't make it. It was a nightmare. If only someone could have helped me with that then! I will say therapy for other sensory things, like daily therapy, brushing, and listening have all increased their range of foods. They aren't awesome eaters, but they're not terrible either. Both have texture issues. One thing our OT will do more of in the next burst is using the vibrating toys in their mouths. Also, she has Jack practice blowing bubbles to increase muscle tone in the mouth. I will say that both my boys are below the weight charts and I have had to let go a little with my worry about their eating, in order to prevent mealtime from becoming a power struggle. I think that while they have obvious texture issues, I am thankful they are not limited to only 5-10 foods like some of the children I read about on my SPD listserve are, so I am thankful for that.

This is so fabulous, I had to share

THIS makes my Friday!

Hello? Can anyone out there hear me?!?

This week has brought a new tribulation joy to our therapy: listening therapy. Both boys are to spend 30 minutes 2 times a day listening to the CDs. This means 2 hours of our day are now eaten up with the boys listening. It's harder to get out and do stuff, it's slightly overwhelming, but we're learning to adapt. They'll do the listening therapy for 6 weeks.

The boys have started this program: Vital Sounds. So far it is amazing to me as a musician/music teacher how using sound can affect muscles, balance, and a host of other issues. I have been reading up a little bit about the "father" of using listening in a theraputic way, Tomatis. You might remember from a previous post that when I initially heard the CD during the boys' therapy, I felt nauseated. Makes me wonder what effect the CD has on me based off of my prior ear training.

Sa far so good...so far slightly overwhelmed!

Emotionally worn out

I cried at therapy yesterday. There, I said it. I am emotionally drained by all the things my boys are doing. The therapy is so wonderful, but it makes me really really tired. (Them too.) I am so nervous about what will happen next. Will we do more? Will they qualify for continuing services with the sd? We had an OK session Wed and an awesome one Thurs. I am overwhelmed though. Brushing, trips back and forth, trying to do all these things at home to incorporate what they're doing there...

I am tired.

I am thankful every day that my kids got the chance to do what they are doing. To be able to try the service model Dr. Lucy Jane Miller has pioneered. To have found a place where the therapy is cutting edge and is making my kids brains' grow and stretch. When we talked yesterday, our OT said the boys have made greater strides in these 4 weeks than many kids they see make in a year.

So what's next? We're waiting on someone to pick up our call for a PT consult/eval. The boys will probably get some shoe inserts/orthodic type things. We'll see if Jack will need additional PT for building core strength, and to continue working on his postural issues.

Fishy Wishy

I know I've mentioned him before, but the pictures I took today of fishy wishy speak volumes about the love the boys have for him. I had just changed his water last night and thought I'd get a few shots of him for the boys to remember...



...then they came down in the morning and saw him on the counter.
First Summy:



Then both.





love it!!!

Big step back

Both boys struggled with therapy today. Summy went back to his repetitive "looping" patterns, and Jack cried he got so frustrated with himself. I admit, I was pretty freaking frustrated myself.

There's always tomorrow, right? It can't always be sunshine blowing up my ass, I suppose...

I cried.

Summy rode the carousel today. He seemed slightly nervous but after picking out his horse color (they both chose brown) he made whinnying sounds and seemed super excited while we waited for the ride to begin. It started to move and he cracked a huge grin. (A far cry from a few months ago when we went for Mother's Day. Summy cried "I'm scared, all done!" as the ride was going, but we couldn't obviously get off.) A few times today he said "I got you" which in Summy's world is SPD speak for "my propriceptive and vestibular systems are in overdrive" But when it was over he said "more?" and cried as we got off. Being able to ride the carousel at the zoo was one of Summy's 4 goals for our therapy "burst" that we are currently in. I could not be prouder. I feel like my heart will burst.

After spending the day at the waterpark, we learned a new goal we might make for both boys will be regarding the water. I'd love to see them be able to enjoy it more.

What a huge step today!

SPD breakthroughs

3 breakthroughs my SPD kids made in the last 24 hours:

Jack:
-climbed a rock wall at the playground without falling off. Realized when he reached an unsafe part.
-played in the rice in a sensory tub
-helped his brother today go down the tall slide at the playground

Summy:
-Went down a tall curly slide by himself after only one time going down with David!!!
-Initiated a kiss tonight at the playground and before bed
*** This is a HUGE ONE!!! Went on a spinning merry go round at the playground tonight!!!

I am so proud. Summy is like a different kid!

Pictures from the 4th

Too many to choose from, as always. I'll share the morning pics from the parade at my mom's house. We spent the evening at my Papaw's and the boys loved the fireworks. Hope your fourth was filled with as much joy as ours was!

Meet my new baby

I applied for a grant/scholarship and was accepted into a week long guitar class through Duquesne University. Today was my first day. We walked in, were given numbers, and they drew from a hat. We got to walk up to a huge table and choose a guitar to keep from TONS of makers...Martin, Taylor, Fender... I got this AMAZING Michael Kelly. I am SO EXCITED! It's my new baby! I went to guitar center tonight and picked it out its own stand and gig bag! LOL!

By the end of the week, I plan to fully rock out on it. I can't believe how much better I can play after one day!!!

Looky looky, we've got a swingset!!

We went from this...




to this




to this!



I am about to go wake the boys up so they can try it out. They are going to be SO excited! I am also happy that Summy will have a chance daily now to attempt going down the slide, and swinging!

Sensory Processing for Mom?

Two wonderful updates for you:

Yesterday Jack tolerated getting in the ball pit for the first time during therapy.
Today Summy did as well!

Albeit during Jack's therapy today when he accidentally got shaving cream on his hand, he freaked out and ran like a hysterical mess around the room, but I think it's huge progress! Jack is also climbing down a ladder better, putting one foot at a time instead of missing rungs, hanging, and falling.

I hosted a ton of friends for book club Monday night and Shannon was so kind as to leave her puppy chow behind. The boys couldn't be happier!



Today during Jack's session the therapist put on some "sensory listening." It was freaking me out. Music with muted channels, things going on in the background, and distortion. It literally made me sick to my stomach. Perhaps I need some therapy myself??