Short

This is a good article to read about Sensory Processing Disorder. Galen has it, but isn't officially diagnosed with it.

I meant to include in the last post that I imagine a few people, at the very least, want to know why we were asking for donations to help build a swing and a sensory board for Galen, yet I could afford to have surgery during that time. The answer is quite simple: Medicaid paid for the entire surgery based on the diagnosis of "nasal blockage".

We're currently working on the sensory board. Mazzu says my thoughts that we could get it and the swing done over the weekend is way off. He wants to spend around a month researching the best stuff to buy and use to make the swing as safe as possible. I agree with that reasoning. The sensory board is under way as of tonight. We bought the board last night to go along with all the sensory stuff we bought. The board is drying and will be cut in half before we start adding stuff to it. It's far easier to make stuff while the kids are asleep or somewhere else.

Tomorrow we're taking the kids to a Homeschooling Group park day, assuming they wake up in a good mood. Flint tried to climb into the car as soon as I told her we were going to the park tomorrow.

Longish Update

Galen had his preschool evaluation thing last week. They agreed he'd qualify. We had to turn in some more papers from Cole Therapy to them today, but should be in the works to getting him started soonish.
I'd much prefer to homeschool them both, but this seems like it could really help him in the long run, so we're going to give it a shot anyway.
We've had a pretty busy February so far. I had sinus surgery and got to experience the "fun" of having my nose bumped into by both kids multiple times during the recovery. We took Galen and Flint to their first funeral ever. Flint seemed to enjoy the church singing and fell asleep during it. Galen, unsurprisingly, did not do well. Lots of screaming, so we alternated who was outside with him during the service.
Then we went to a birthday party for a cousin's daughter and the kids had a blast. Galen took very well to that part of the family, despite having never met them before.
Last Friday, we went back to the Kool Smiles dentistry and had a crappy experience again, so we just plain walked out. We're in the process of finding a new dentist for the kids.
We've been taking Galen out on more short shopping trips lately, since he seems to be handling it better these days. After the dentist disaster, we went to Goodwill for about an hour. He wasn't particularly fond of the experience, but didn't scream bloody murder this time. And we managed to spend less than $7 on 3 gifts for the kids.
Today, we took Galen and Flint to the dollar store after we went to an OT make-up session. This wasn't actually in relation to the kinda disappointing news we received from OT today, but needs mentioning. Galen has til June to start making actual progress or Medicaid will cut him off from OT. He's just not making any progress.
We actually went to the dollar store for a different purpose, but managed about an hour before the kids were really tired of shopping. Galen's been doing considerably better at sitting in the shopping cart and not screaming. I did sit him down at the end of the trip for a minute and quickly regretted it when he ran off smiling and giggling throughout the store.
While there, we bought lots of different sensory like stuff to make our own sensory board thingie for Galen and Flint. Hopefully Galen will enjoy it and use it, but at the very least, Flint will. We got some carpet for a different texture, a hand duster thing with cool texture, a back roller, a toilet paper holder, and miscellaneous other things. We spent quite a bit, but it was far cheaper than buying it at Walmart or Lowe's and WAY cheaper than buying an already made one. Basically to put together a couple of different versions of things I've seen made by friends and on Pinterest.
I got to see the sensory room that Cole Therapy has today. It looks really freaking cool. A homemade play house with a slide on one side and a ladder on the other and a door and window to see outside it. Along with a "crash pad" which is basically a big mattress cover over styrofoam pieces. They stopped taking him in that room because all he does now is lay out on the crash pad.
We also got a piece of carpet to go on the platform swing like they have at Cole. But we haven't gotten the wood to do these things yet. It's definitely a long process cause it's so exhausting doing all these things.

Tiny Update

Not much new to update, but we finally have a date set for Galen's evaluation for the preschool for disabilities. It's in 2 weeks.

Flint and I sat in on therapies today (make-up for a missed one). Galen had a pretty good day. He's still not a fan of most toys, but he'll do them with hand over hand. His core muscles are very weak, but at least now I have a better understanding of how to work on those with him.

Both of the therapists got to experience how Galen interacts with Flint (as in, hardly ever). Flint had a blast playing with a cute little piggy bank with huge coins that Galen liked last week, but wouldn't play with this week. He prefers to run around, aimlessly, looking at the sky. But he did climb the wooden staircase thing they have there today, all on his own.

We were trying to potty train him since we'd run out of pull-ups. But a loving cousin sent us some and Galen (and Flint) are so much happier. Galen understands the concept, but he's just not ready yet. Flint's no where near ready.

Short update

Today I took the kids outside by myself. They both wanted to go outside, so it was fair to take them. Unfortunately, Galen ran into the street twice and I had to chase him a lot the second time to catch him before he could get hurt. We came inside instantly. This didn't go over well with either kid, nor my bronchitis, but safety first.
I really think we'll have to invest in a fence for the front yard, given Galen's afraid of the back yard. I don't understand why, but I tried to take them in the back yard first, and all he did was cry.

Start of 2016 Update

Galen turned 3 December 8th. We had a great party at the park for him. He didn't care for the gifts and just wanted to run around. It was a great time.

Christmas was...fun. Neither kid understands what Christmas is, but we did it anyway. The reasoning for calling it fun is that Galen came down with a bad cold the night before Christmas Eve and Flint came down with it Christmas Day. Mazzu's family dropped off bbq for Christmas Eve. On Christmas Day, we went to a restaurant with my mom and step-dad and Galen was miserable. He screamed and cried and it was a horrible time. But after he had a nap, which is highly unusual, especially a 2 hour one, he woke up feeling better and had a decent time at their house. We came home with a ton of new toys (the ones that are kept there, so not technically new per say). Mazzu caught bronchitis. And so, for a good week and a half or so, everyone in the house was miserably sick. Not the best of times, to say the least.

For bedtime, we now have a pretty decent schedule. A melatonin around 8pm, an hour or so later, the medicine and brushing teeth. We've brushed teeth once a night, every night, for 2 months now. Bedtime is immediately after medicine and brushing teeth. They've been sleeping from 9pm to 8:30am (or thereabouts) pretty much constantly since we started this schedule. It seems to be going really well.

He's recently begun chewing his fingers constantly again. I've sat in on his therapy a couple of times and have discovered a few things that we realistically need to help him, but can in no way afford.

As an example, there's a wood platform swing that Galen really loves in therapy and there's a gymnastic-like mat that goes under it (in case he falls off). While we can get on without one, it would apparently be incredibly important to have access to such a swing because it would help his "core muscles" in his stomach that are apparently way too weak by making him straighten himself out (sitting up or laying on it).

Another example is that we would really benefit from some sort of AAC machine (probably an actual Ipad with an expensive program designed to help non-verbal people communicate).

In general, there's not much new news right now. Just same ol' same ol'.

But, I did create a GoFundMe in an effort to help. I hate asking for donations, but this is for my son.

GoFundMe for Galen's needs

Update

I've been feeling down the past few weeks. I've been needing to write an update, but just couldn't bring myself to do it until now.

We had an in-home dietitian referral a couple weeks ago. She was a nice, pleasant lady. She suggested we'd probably need to give Galen 2 Chocolate Boosts again, since I had put him down to 1 a day. So, he's back on 2 a day. Later that week, she called and confirmed that we definitely needed to up him back to 2 a day for calorie intake. She put in a referral to Medicaid to cover the costs of his Boosts since they're rather expensive, especially with 2 a day.

The next day we saw the neurologist, but I already updated about that. The big point on that visit was understanding that Galen probably won't be able to truly speak for a very long time. As such, she suggested that we should not wait until Galen can say he needs to go potty to start potty training him. That I plan to start when Flint's a little older and potty train both of them at once. What fun that'll be.

Last week we saw the dentist and didn't have a great time. I posted this on the dentist's facebook and was asked to elaborate: "We generally have a 'good' experience with the dentist. I quoted good because with a Autistic son who's afraid of brushing his teeth, there's not a great experience possible currently.
Today, however, I left feeling incredibly displeased and insulted by one lady. The rest were good and polite to us. We'll still be going back since our Medicaid has limited options, but the feeling reminds me of why I have always feared dentists."
After my Galen's teeth were brushed, I was calming him down and told him I could lie to the dentist, but I didn't since it's important not to. At which point, the lady who brushed his teeth said something along the lines of "You aren't trying hard enough". It was incredibly insulting and no one can really know what it's like to handle a total melt down every time you try to brush your child's teeth unless they have an Autistic child who's afraid of teeth brushing as well.
The actual dentist and the other assistant who frequently brushes Galen's teeth were incredibly nice and said he did a great job. He's never had cavities. And, considering how long the wait generally is, I was incredibly unhappy with the service. We were taken back, waited around 20 minutes until they finally brushed his teeth, then another 15 minutes or so until the dentist even showed up. They were much faster with Flint and treated her and Mazzu a lot better. She was done in about 15 minutes total.

Since Monday (when we saw the dentist), I've had a "chore chart" up to check off brushing our teeth. We're currently up to 1 total melt down a night when we force brush his teeth.

On Tuesday, we saw the GI again. Galen had lost weight since he'd been last seen. I estimate that's not true, given his fear of scales, and that he won't stand still long enough for it to measure accurately, but I can't be certain either. So now we have a medication to give him at night to try and make him hungrier. We started it last night. Boy was that fun. I gave him the medicine last night, then brushed his teeth, so it ended up being 1 much longer melt down than it's been all week.

We're also giving both kids melatonin every night around bedtime to get them ready for sleep. This was suggested by the neurologist, so we're trying it again. Now we know that it takes 30 minutes-1 hour after giving it to them for it to take effect. The last time we tried it, it didn't seem to work, and seemed to make Galen more energetic, but it would seem that we must've missed the "right now is bedtime" moment and he'd get his 2nd wind. I don't want to jinx it, so I haven't said it out-loud, but it sure seems to be helping Galen get on a more decent schedule.

This entire month has been extremely frustrating with Medicaid issues. We had the speech therapy evaluation, but then had to skip speech therapy the next week until Medicaid re-approved it. Last week the occupational therapy was cancelled until the evaluation can occur (which is tomorrow) and then Medicaid will have to re-approve it too, so probably cancelled this week as well.

This week is Thanksgiving and we'll be going to see my grandma Gran. Hopefully it will go well. Both kids had a blast last time we saw her, so I imagine it will be a blast, but given this month and my mood, can't be certain. The holidays always bring me down as it is.

Galen has his 3 year checkup next month and Flint will have her 15 month check up next month as well. I think we'll be putting in a referral for Galen for physical therapy evaluation again, since they've suggested he might actually need it now, and is much more comfortable so they can really see how he is physically. I also plan to get Flint referred for evaluations, just because I worry.

Galen will be 3 in just under a month

We saw his neurologist today and had some more blood work drawn on him. They're testing for any metabolic issues that could cause his delayed development. We won't need to see her again for a year, unless he develops some issue (ie seizures, really bad aggression).
He's doing pretty well, but she made sure to remind us that Galen won't suddenly be cured of his speech delay. She did explain the few times in the past months that it seemed like he had a major breakthrough, then that he reverted. She expects that he has actually been having episodes of "echolalia" (the meaningless repetition of words) like how he sang "dead or alive" a couple months ago and then didn't repeat them anymore.
I didn't realize that could be what he was doing. He was probably doing it with "bubbles" as well. Since he hasn't been repeating it in awhile. She said it's a normal part of learning to speak, so that's probably what he's been doing. And we should definitely not expect him to talk perfectly overnight some day.
We found out that the MRI shows he has "a perfect brain". She seemed so pleased and excited by how it looked. Apparently the radiologist thought something was slightly wrong, but it isn't.

We've pointed out a few times to different doctors that we understand what Flint says more than what Galen says and she's only 14 months old.
Flint turned 1 September 8th. We celebrated and Galen had a blast at the park. He even played with the sidewalk chalk and balls some others brought.

We're still having eating issues , but that's expected and will probably take a really long time to get Galen to a "proper"ish diet. On the other hand, we now have a referral to a feeding clinic he can see once he's 3. He also has a referral to a company that could cover his daily Chocolate Boost for nutrition.