Wednesday, December 11, 2013

Long time no post, new therapy stuff and OH BOY, MELTDOWNS and HORRIBLE SLEEP!

It has been crazy to say the least.

Pre-term labor. A three day hospital stay. Bed rest. All while trying to manage my SPD boy.

There is someone here to help me watch the boy every weekday. He has not taken the extra stimulation well. We've had a major sleep regression, therapy regression, head-banging and head slapping regression. Lots of anger and tears. Food regression. It's been hard on all of us. But obviously nowhere near as hard as it is on him.

His therapist suggested this thing called an ILS pillow.

Well, they're $170, so hell to the no. It delivers sound through a special pillow and supposedly through vibration. Well, sound waves in and of themselves create vibration, so I had an idea to simulate this pillow without spending $170. The ILS dreampad music is available for download, so I looked into a set of pillow speakers, a vibrating pad and a special pillow to put the speakers in (thankfully I can sew and will just make little pillowcases with zippered pouches for the two speakers at the top for less than $5). Then I loaded the music on his iPod. For $40 I made one that is more tailored to him.

Here are the products I ordered:

Pillow Speakers

Stress Pillow

Massaging Base Pillow

We also have a special stuffed calming dog that is infused with lavender and has a flax base. I am going to start warming this up and giving it to him before bed, in addition to starting his calms forte again.

Something has to give. It took three, yes THREE hours to get him to sleep last night. He's exhausted, Dan and I are getting no time to ourselves and we're all frustrated. Fingers crossed all these things help!!

Wednesday, November 13, 2013

*warning, foul language because I'm beyond frustrated*

Well this is the worst day we've had in a good long while, and I think the worst meltdown he has ever ever EVER had.
What a day!

And it's all because of these little assholes right here:

Safari Limited Steam Train Toob

This will go down in history as the WORST toy purchase I have ever made.

I made some sensory bins with colored rice for the boy, just small ones with things like little plastic bugs and spiders in them. I thought I would get him trains along the same line for one of the buckets.

Well, they don't hook together, they don't stand up, they don't do anything he wanted them to do. He was hysterically crying, inconsolable, so I took them away. 

What ensued was biblical in proportion. He was screaming, throwing himself all over completely out of control, hyperventilating, turning purple and his whole body was trembling. He was so flipped out he couldn't calm himself. He was running in circles on the verge of passing out. I finally gave them back just to scale back the flip out.

I feel like burning these little shithead trains tonight in some kind of savage sacrifice once he's asleep. I will NEVER give him these damn things back, they're going in the garbage. At least they were only $8.

Saturday, November 2, 2013

Crash Pad Time!

As I've been posting, we're trying to find some funding to get Tristan some indoor sensory tools and therapy equipment. This stuff is unbelievably expensive, I wonder how they expect parents of SPD and ASD kids who are sensory seekers/avoiders to actually help them when not at therapy. Because let's face it, 2-3 hours a week is simply NOT enough.

So I started doing some of my own research to see if there was anything we could do on our own, either permanently or just in the interim. What I really wanted for Woodchuck was a crash pad. These are used in therapy to help "get the ya-ya's out", help SPD kids learn body mechanics, be comfortable with their own body, feel confident in their body, etc. Tristan gets scared by swinging motions and heights. One way to help him is to sway him and then "crash" him onto the crash pad. These are usually 4x4 ft (sometimes larger) pillows filled with dense foam. The pillows are anywhere from $150-$300 EACH. The foam to make them is equally expensive.

So...I got creative and called around to local furniture places, finally finding a wonderful place in Sellwood called Trio Furniture. The woman who owns the business has a son who is mildly autistic, so when I told her what I was looking for and why I needed it she didn't hesitate to donate to me an entire SUV full of large foam pieces for me to make Tristan's crash pad. There is easily $500 worth of foam pieces here. Easily.

So people are truly angels among us. I still get a little choked up when I think about people's generosity.

The crash pad is now halfway done. The boy got to play and jump on what I've done already tonight. I just took a huge half bolt of fleece yardage, made two 4 ft x 6 ft pieces, serged them together and turned it right side out. Once it's all done I'll just stitch it closed on my regular sewing machine.

The process of shredding the foam by hand has been rather tedious, I won't lie about that. To fill it half way took about four hours worth of ripping the pieces by hand (forget about scissors, they cut foam with a saw for a reason).

Here are some pics below of the process  and what the crash pad currently looks like:

Foam block being ripped

Run and CRASH!

The calm lasted for a few seconds

Before that gave way to rolling around. I think he likes it!

Wednesday, October 30, 2013

Frustrating Morning, and a plea for help

Speech therapy was very frustrating this morning. Tristan has reached a serious plateau where he is all over the place, running around like a crazy person, not focusing. This has been happening with increasing frequency.

His therapists have had a meeting of the minds and have decided the best course of action is to remove all single, small toys from his play area and replace it with a play structure that offers the ability to climb and jump and get his abundance of energy out. He craves constant movement and small toys are presenting a huge challenge to him advancing in his therapy.

Step2 Clubhouse Climber

The problem with this is play structures are extremely expensive. Between the cost of his therapy (not all of which is covered by insurance) and fuel/transportation costs of getting to therapy which has skyrocketed, we simply cannot afford to provide such a structure for Tristan.

I created a gofundme page in the hopes we can raise enough money to provide this much needed piece of equipment for Tristan. Anyone who knows me knows how much I absolutely abhor asking for help or a handout, but this is my kiddo and he needs this. So I'm stuffing my pride and asking for help. Any help is appreciated more than words could express, even if it's just sharing the link.

Tristan's Go Fund Me

Monday, October 28, 2013

Trains. Oh Trains!

Trains at sensory therapy last week


We've come to realize, and his therapists agree, the trains are really a detriment to Woodchuck right now.

This partially breaks my heart for my beautiful boy, but I kind of knew it already. He does so love his trains though...

The thing is, when he doesn't have them he does fine, he doesn't seek them out, he happily plays with other toys. Sensory therapy today went a MILLION times better than the last two sessions because I didn't let him bring trains. He was mad when we left the house, and cried and struggled with it. But once we were out the door and there were new things to look at he was fine. He didn't ask for his trains. He didn't go looking for them. He engaged better at therapy and played with different toys.

So soon the trains will all be phased out unless it's a book or a puzzle with a train on it. Here's hoping bedtime goes better (that's been a huge pain in the derriere also lately, as he insists on sleeping with them and then I have to be mean mommy and take them away and there's tears and screaming and crying and flailing and I feel like a big ol' jerk). Not to mention if he rolls over and they make noise he wakes up and it's rinse and repeat. I will  not  miss that bit about his trains at all.

Really, I won't miss any of it. For far too long all they seem to do is make him mad in short order and they've overstayed their welcome. Perhaps when we're further into therapy and he can regulate on his own better we can reintroduce them. There was a time before his SPD really took hold he got a lot of enjoyment out of them, but as things have progressed and we've been tossed through so many changes they became both his security blanket and simultaneously his antagonist.

Here's to blue skies sans trains soon!

Sunday, October 20, 2013

A new phrase!!

I just have to brag on my Woodchuck for a minute, because this is a very proud Mommy moment right now!

He said THANK YOU!

Or at least his version of it. With his apraxia things can come out pretty garbled, the signals from the brain to the mouth get jumbled and the mouth doesn't know how to imitate sounds well or often.

But this morning, a correct signal got through. At least, more correct than usual. I handed him something and said "there ya go babylove" and he responded, without missing a beat, "tay ya!"

Sure sounds like THANK YOU to me!! My heart is just swelling with pride. My little boy might actually speak sooner than I think. Maybe I should scale it down and not get too excited, but right now that's impossible! I am just so elated! Yay for sensory therapy and speech therapy! And yay for exclamation points!!

Wednesday, October 16, 2013

Speech Therapy was a success!

Tris got to see his awesome speech therapist Jean this morning. It had been a few weeks so he could get into the swing of things with his sensory therapy.

What a difference a few sensory therapy sessions has made! She said she saw a big change in him already, in terms of playfulness, lack of meltdowns, attention span, etc. I will be so so so so so sad when she has to transfer him to another therapist, we love her and have been with her over a year now. I can't imagine someone else being his speech therapist.

I also told her about the study I found regarding SPD and brain imaging that I posted here. She was very excited about it!

It was a much better morning than yesterday, where Woodchuck had to miss his sensory therapy because I had a scary ultrasound and got stuck in the doctor's office for nearly three hours (which overlapped his sensory appointment). At least we won't miss tomorrow's appointment!

So what better way to celebrate a good speech appointment than to make yourself a little joker-esque?