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.
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!!
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.
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!
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.
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.
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!!
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?
I stumbled on this last night. It was SO EXCITING to read.
Do you know what this means?
This means finally, FINALLY Woodchuck could have a REAL diagnosis that is recognized by the DSM (Diagnostic and Statistical Manual of Mental Disorders,) a REAL ICD-9 code that distinguishes him from having Autism or any Autism Spectrum Disorder because he does not meet the criteria for autism at all!
While he would need a sedated MRI for this diagnosis, I would be okay with that if it means he would truly get the help and attention he needs. Please let this research continue, let it be recognized and respected. Let it help my beautiful, brave boy!
Apparently when starting sensory therapy it opens up a lot of curiosity and body exploration. We've gotten a lot of "'Sat?" ("what's that?") while pointing to his body or ours. He slapped his knee and said "knee" the other day too, which was nothing short of shocking.
It unfortunately leads to them feeling a little overwhelmed and leads to them constantly on the move. We've had a lot of climbing, jumping, not listening, misbehaving more than normal, etc etc etc. Rinse and repeat. We were a little at a loss as to what was going on but his OT explained yesterday that it's pretty normal when therapy first starts.
Joy.
At least I have an answer as to why this kid has been going a million miles an hour the last week and a half.
We went to play at Munchkin Playland today and he ran all over for an hour and a half, played with some kids (some kids were nice, some were little kleptos and I finally had to hide his trains in my purse because one kid kept yanking them out of Tristan's hands after shoving him...so I went over and politely jerked them back out of that kid's hand...and of course the mom was who knows where? I took a slightly sick delight in the kid's savage screaming, he was not a nice little boy).
Tomorrow is the pumpkin patch at Lakeview Farms in North Plains.I am super excited for this, we went last year but Tris was just starting to get into trains and wasn't super psyched about the train they have running there. I think he will practically poop his pants (not strange for a toddler I suppose) when he sees it this year. And then Sunday we are carving them and making a big, fun thing out of it!
Here's hoping for a less crazy, out of sorts weekend than the last one!
Woodchuck had sensory therapy this morning and it went really well (from what his OT said). They used weighted balls for the session and it kept his attention the whole time. This means I get to sit in on his therapy on Thursday! I am SO excited for this!
We also pared down his toys yet again to where all he has in the front room is his zany zoo, his arts and crafts table with coloring books and some larger reading books, and we brought his sand and water table in, cleaned it out and put rice and lentils in it (and all his trains and matchbox cars went in there too). We've had far less meltdowns without the train tracks being at his disposal, and I managed to get out the door...
...without any trains!
I used a bit of distraction and made a big show of putting his dinosaurs in his Thomas backpack, and he actually did okay. He unfortunately fell asleep again on the way into therapy which resulted in a super late nap today. I wonder how I'm going to get this kid on any semblance of a schedule with his therapy at such a wonky in-between time of the day. It unfortunately was all they had available and we were lucky enough to get an opening so soon, it was supposed to be months before his therapy would start.
But today at therapy he had an awesome day! He played for an hour with co-attention and no meltdowns with weighted medicine balls. His OT was able to direct his play, and that literally has never happened. He is so rigid in his play and so scared to deviate from the norm so this gives me immense hope. Hope for him. For me, too.
Some days I just am so proud of this little person that I created, that in the face of such challenges he still finds ways to laugh and smile and have fun.
Yesterday the husband was here for the weekend, while we work this marriage stuff out. He's gotten really into retro shaving stuff, old style razors, etc. so we wanted to go to some vintage shops and flea markets to see what we could see. But before that we wanted to take the boy to this awesome park I found that is comprised of a giant play structure THAT IS A PIRATE SHIP! There was also a huge sand pit (the boy's favorite feature of the whole park).
Huuuuuge slug!
He was quite enamored with the giant leaves but
wouldn't touch them because they were wet and slimy
I can't say enough cool things about this park, and it's a little hidden gem so I almost don't even want to say the name of it (like this blog has an insane following or something, ha!) but I'd hate to show up one day and have it be crawling with people.
I'll see you later, slide...
The entire play surface is recycled rubber and is uber soft, something I especially liked since my pregnant butt could sit at the sloped edge of the sand pit near Woodchuck while he played and not be uncomfortable. There also is protected wetland all around the park so we walked in a little wooded area and heard and saw birds. Lots of older people were out walking their dogs, Woodchuck especially enjoyed the dog watching.
He also went across a little bridge on one of the play structures. It didn't have as much play in it as most playground bridges too, and didn't bounce a lot, so he went across it three times. We were so proud of him and praised him boisterously for going across the bridge at all when he was scared, but then running back across when he felt safe. This is a big thing for Woodchuck!
The sandpit was definitely the hit of the park.
From there we went to a new shop called Curiosities, and while they had no razors they did have a huge display of die cast cars (the average price of which was about $48 so Woodchuck was getting quite upset he couldn't touch). I did score him a little bag of hot wheels with some older and vintage cars for only $7.50, there was 12-15 cars in there so that was a nice little score. The BEST part of this shop though, was finding a vintage fruit crate that had a steam train on the end for only $8. Of course, Woodchuck loves steam trains and one of his Christmas presents is a bunch of art supplies-- new brushes and paint and crayons and sticker activity books, markers, you get it. I was still needing to get a basket to put all this stuff in, instead of individually wrapping everything (sensory kids, at least my sensory kid, does not enjoy unwrapping a ton of things and gets frustrated) so I figured a couple baskets of stuff and his wrapped books and we'd have an enjoyable Christmas morning. The baskets around here either weren't what I was looking for or ridiculous overpriced (can someone explain just why wicker is so bloody expensive?) so I was especially tickled with this find.
We next went to a huge, cluttered and kinda ratty flea market. Woodchuck was nearing nap time, he had only eaten pretzels and half of a milk so he was starting to lose his patience. He is overwhelmed by visually cluttered spaces, I should have known better than to take him in here. The husband and I agreed this will be a lone wolf hobby for him from now on, as it's too much for Woodchuck's sensory issues to handle.
Fast forward past a 20 minute nap, waking up upon arriving home, refusing to go back to sleep. He was a bit of a mess the rest of the day and nighttime, OY! It was a nightmare. He went to sleep fairly okay but woke up a half hour later, and didn't go back to sleep for over an hour. He was a complete mess, twitching, crying and screaming, not settling down. It was a direct result of the super-stimulating day. If he only gets a short nap and can't work through the sensory stimulation of the morning he wakes up grumpy and everything causes a meltdown. Yesterday was a prime example but bedtime was the absolute worst part of the whole day. All through the night he also had to be touching me, curled in my arms like a squirrel, holding a piece of my hair, some connection to me. It made for a very un-restful sleep.
I hope tonight is better. We were planning on going to the pumpkin patch that has a little ride-on train but decided to parlay that until next weekend for fear of a repeat of last night. So we're going to go back to the pirate park today and that will be the extent of our festivities.
So we tried out Kiwi Crate for a couple months. His attention just isn't there to do the projects so I cancelled it. We still had last month's box sitting around and what does he spot at 5:45 this morning?
The tempera paint.
For the sake of my sanity I relented and set up the canvas, brush, accouterments and pots of paint. It proceeded to thoroughly piss him off. I ended up having to pull him away from the canvas after he started running his beloved James train and coal car across the globs of gleaming red paint.
Looked cool. The mess it made? Not so much.
So I take the train and the screaming and head slapping starts (I even discovered after I'd cleaned everything up there were flecks of red and black paint over his eye and under his nose).
Normally he likes hand-washing and washing his trains but while he was repulsed by the sensation of the paint he wanted to keep painting. This is a real stumbling block we have with Tristan: he's both a sensory seeker and a sensory avoider, and sometimes the two overlap. He doesn't know what to do, he wants to continue doing what he's doing but his little brain is completely unsure what to do with the sensory input he's getting. He does this with his train tracks a lot, he wants his tracks to do something and he might not be able to get the tracks to stay or put them together and so he continues to try and build track while screaming. If I don't intervene this can go on indefinitely or until he's so mad he rears back and slams his head into the floor, slaps himself or even hits himself with his train.
Sometimes I'm so frustrated that I can't make this better for him now. The world can be a truly overwhelming place for my beautiful boy often.
Today was Woodchuck's first immersive therapy session at Sensory Kids, LLC in Portland. It's a decent drive from the house and just getting there was a fiasco. I forgot my wallet, something I didn't realize until I got into Starbucks and ordered his cake pop and had to leave empty handed, the second meltdown of the trip and we were only 15 minutes into it. As we were going into Dollar Tree to look for fabric baskets he wanted to bring every one of his trains; my gently telling him they would be waiting in the car when we got back and it would be quick did nothing to ease his anxiety. He cried and screamed a couple times though I let him take three trains (making it hard for me to hold onto him). He quickly calmed down once we got into the store, but they didn't have what we were looking for.
Next stop was Starbucks, and since the line was 15 cars deep I decided to go in. This was the first huge meltdown. He wanted to bring every one of his trains again, but since he would be carrying his milk I had to make him leave his trains. He tried to fling himself on the wet pavement, only I had his wrist so he ended up bobbing up and down wildly flailing and shrieking like I'd knifed him. I tried to let him work it out, people in the parking lot staring, but it became clear he wasn't going to settle down so I had to resort to a stern "that's enough!" and walk into Starbucks. It was only after I ordered everything that I discovered I left without my wallet. Sometimes I wonder where people's humanity is, he was shrieking for his cake pop, clearly very distressed. While I don't expect handouts or special treatment, I also know were I that barista and my customer was a visibly pregnant, frazzled mommy who had forgotten her wallet I would have at least given the kid the cake pop. Maybe that's unrealistic, I don't know.
So I have to go tearing home, get my wallet, go back to a nearly cleared out drive through line at Starbucks only to discover Woodchuck has fallen asleep in the backseat. Typical.
We of course, in spite of the setbacks, got to therapy way too early and he was all over the waiting room not wanting to sit still or maintain one activity longer than a couple minutes. Cue contractions, what a joy. I finally had to just go into the observation room with him, shut the door and let the tantrum ensue because I couldn't keep running after him. I feel like such a jerk mom when I have to force something on him I know is going to cause a big meltdown. Thankfully there was no head banging or slapping, but he did throw himself on the floor and start screaming.
His therapist came in and therapy started. My PTSD that I'm starting to work through makes it difficult for me to let people take my son away from me, especially someone I don't know. Hell, I have trouble letting Woodchuck's own dad take him to the park five minutes away for fear he's going to pitch head first off the play structure and break his neck. This is how my PTSD rears his ugly head.
Anyway, today is just a "get to know you" session. Even though there was no real therapy happening, I sat in that room behind the two way mirror and I can't help it, the tears start flowing. I am so hopeful this will help, but I'm also a jumble of other emotions thrown into it: "what if his sensory patterns are so ingrained he can't overcome this?", "what if this doesn't help him talk?" (Woodchuck has Apraxia), guilt that I don't know how to help him, guilt that everything that happened during his birth is not only my fault but why this is happening to him. And so the tears come. I'm sure some of it is the pregnancy hormones. But it's legitimately all that other stuff more than anything.
(...yes, that's me sniffling because I'd been crying, sue me...)
I watch him through the glass go from thing to thing to thing, overwhelmed with all the things to do, not focusing on any one activity more than a couple minutes. But he's okay without me, something that wouldn't have happened a few months ago. He is joined at my hip, my little wart, even showering alone is impossible, bathroom breaks alone are impossible (if I shut the door without him, fuggedaboudit, your ear drums will rupture from the shrieking...)
She eventually had to just take him into the smaller gym because there was too much stimulus for him. Not being able to see where he was and what was going on was slightly nerve wracking, but I was actually proud of myself that I was able to handle it and didn't flip out. For some reason knowing that this is what they do and they can handle Woodchuck's issues puts me at ease more than in other situations. I think that's much of my anxiety is worrying people won't be understanding of his behavior; being on the other side of the equation now, I try to not be so judgmental of those kids that freak out in public places-- I'll side eye the parents if they do nothing to help their child and make the rest of us listen to it ad nauseum, but I don't immediately jump to thinking "what a brat", because I now know it may not have anything to do with that. Unfortunately most people have no understanding of this, and so I'm sure most people do look at Woodchuck mid-meltdown and think he's a brat. It bothers me a lot, but eventually I rationalize it that they just don't know any better and f*ck their opinion. Most of my own family have zero understanding or patience for Woodchuck's disorder, why should I expect a stranger to? I haven't even enrolled him in preschool because that kind of structure doesn't bode well with The Woodchuck, but I know the average preschool worker would have zero idea how to handle him. He will, however, be starting a special toddler group with Northwest Regional Education Service District (NWRESD for short) in January and then their special Preschool specifically for sensory kids once he's three. That will help give him some autonomy from mommy, and Bean will be born by then and that will give us some bonding nap time.
And so we're here. I hope Jen can get a nice rapport established with him and we can see some real progress here. His goals for therapy at this time are:
*Lengthening and Strengthening Attention Span (this will help with his speech therapy immensely)
*Transitions (or how to handle them and not have a meltdown- this is his biggest struggle)
*Bedtime Routines (at this time he has to be touching me to sleep, he is unwilling to sleep in his own bed)
*Self Regulation
*Body Movement (Woodchuck HATES movement he's not in control of, especially swings and he's very unsure about uneven surfaces, high surfaces or new places-- he's pretty scared of big play structures at this time, won't go across bridges, etc)
*Textures (especially slimy textures, which will help with his ridiculous eating habits)
I think that's enough for now, you deserve a cuddle and a cookie if you got this far. More to come!
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