Special Needs Mommy

I'm a Special Needs Mommy. What does this mean to most people? Nothing. No one can truly understand what being a special needs Mommy is, unless they are a Special Needs Mommy (or Daddy) themselves.
We were told by so many specialists to do this and that to help Galen. We've done everything they've ever asked us to do, even when it went against my gut feelings.
So, what I'm going to say, may surprise most of you.
Don't follow what you're told to do, unless it feels right to you.
We followed everything we were told to do. What did this do to Galen? He still doesn't talk, but he does know how to communicate semi-efficiently now. You might think this is due to his therapists. But you'd be wrong. He's been in therapy since June 2015. He's learned to communicate through me and daddy working hard to get him where he is now. It's even harder when Daddy is also a "special needs" person. I can see things that he can't see and vice versa.
Galen has grown so much in the past couple of months. Ever since I decided to fully homeschool him over the summer. He still attended the Preschool Program we'd been recommended by countless therapists for 4 days and it went so badly, that I knew I was right all along, and utterly refused to take him back.
That was August 2016. He'd only attended for a grand total of 5 1/2 weeks. And in that time, he developed horrible habits, like pulling hair, hitting, kicking, etc, when he's upset, rather than trying to communicate with us. The teachers let him get away and didn't think it was necessary to contact his parents anytime he got sick or injured. This is insanity. It would be terrible with "normal" children. Just imagine if you have a child who can't talk and doesn't respond to his or her name getting away or vomiting and not being able to tell you. Both of these things happened with that program. My gut had always said not to take him and I ignored it.
Lesson learned.
Galen now looks me in the eyes a lot of the time, and while he's still doing the inappropriate behaviors, he's listening to me better about not doing it. He loves learning and is being involved in absolutely everything these days. We never used to take him out and about because it scared him and he hated it (and would have meltdowns and we couldn't understand what was going wrong). Now we take him everywhere with us and he's so happy. I keep telling him that I didn't take him places because he hated it so much, and was so afraid, and now that he isn't, he goes everywhere with us. He smiles so widely.
Galen is one of the happiest children I have ever met, most of the time, that is. But he was very solemn and depressed when I was making him do things that I thought were wrong (and clearly he agreed but couldn't tell me). We still make him go to therapy, even though he puts up a fight, and it is helping. It's just not helping with his speech.

I love hearing the success stories of special needs children, but I know it's not likely to occur with Galen. I will never give up hope though. Even if he never speaks "normally", as long as he's healthy and happy, that's all that matters.
But, it's incredibly difficult. Incredibly frustrating. Incredibly depressing some days. And there's not many people out there that really understand.
So, when you find a support group, grab ahold of it, and stay with them. We recently started attending actual homeschooling events, instead of just kinda being "part of the group" but in the shadows. Now, Galen's in a group called Tinkergarten and is 4 weeks into it, and actually starting to participate! And he's 2 weeks into a dance class with a teacher willing to work with him, and is not melting down the whole class! This is a huge improvement. All thanks to Mommy and Daddy doing what's right. And Flint's always along for the ride, giving Galen snuggles and kisses and trying to get him to participate more.

#Tinkergarten

Dance Class

The most important advice I can ever relay to you: You know your child best. Don't let other people (even specialists) bully you into something you don't feel is right for your child. Remember not to take everything for granted.

Kinda short, kinda long

I have so much to update, but I don't really have the words for all I need to say. So, I'm going to write something shortish to give an overview.
Galen returned to the Preschool Program and less than a week later, we were full-time homeschoolers. I always wanted to do homeschooling and that's what we're doing. It's taken a lot of time and effort to get accustomed to having both kids when I go out. Mazzu's in college again, so the kids both go everywhere with me. The first couple of weeks, we didn't actually go out that much, but I've been getting better at it.
I signed the kids up for a Tinkergarten trial class and I've never been happier! I joined the class and the kids are doing so awesomely. Flint's interested in joining in on the stuff and Galen's interested, but watching from afar, as of last week.
I finally found a teacher willing to teach Galen dance! I signed Flint up as well. They start on Weds. I'm totally excited to see what happens!
Galen's ABA therapy is starting this week. Technically it was supposed to start Friday, but he threw up, so it got pushed to this Friday as the start instead. Not sure how that will go, but his therapist seems nice, and she said nothing about the current state of toys everywhere, which was a huge worry of mine.
I do have an issue that I'd love opinions on. Galen's therapists have been working with him since June 2015. He's finally pretty ok with being with them most of the time. But, I have a huge feeling that they actually think Galen's dumb.Now, I think switching therapist's would be a bad idea due to how long transitions are with Galen. But I also think that since they're against my homeschooling him, and now they've said something again that makes me think they think he isn't intelligent. I know so much better!
He told me last week he didn't want a hair cut. I told him we had to brush his hair or cut it. Did he want short hair like Mommy or long hair like Daddy? He put the brush to his hair letting me brush it again.
Today he chose "C" on one of the ABCmouse.com games that asked to pick the letter "C", so clearly he knows some stuff he hasn't been able to communicate efficiently (as I've always said and stood behind).
Anyway, I got sidetracked. A few months ago, I said something to Galen, and the therapists told me I needed to tone down my speech to him (essentially talk down to him, which I won't do). A few days ago, one of the therapists said that Galen couldn't possibly have said "How are you?" to Daddy (because he's currently only babbling 90% of the time). Clearly, Mazzu and I both heard him say it, so, duh, he said it. But they don't believe me.
The problem is if we change therapists now that he's finally making great progress (due mostly in part to my full-time homeschooling him, in my opinion), he'll regress. And I don't want that, especially with all the new transitions he's about to embark in (like dance class and constantly going places with the homeschooling groups).
Flint's birthday party was a success. Can't believe she's already 2! Galen played in the splash pad for something like 2 hours. Considering his hatred of water, that was so freaking awesome! He's been sneaking into the bathroom to play with his pool with bubbles in it that we got when he was willing to get in water with his therapists. He's mostly just touching it, but it's awesome. Hopefully he's starting to get better with water, but I'm not forcing it on him. It needs to be his choice. I have to keep telling Flint because she doesn't understand why Galen won't play in the water with her (especially when she's splashing it!).
Next month, we're venturing to a Pumpkin Patch. It's about an hour each way from us, so, I'm hoping it goes well. I have faith.

Shortish Update

I don't like to compare the kids, but I want to show them off in their own ways.

Yesterday, Galen played with applesauce for a good 10 minutes! He hasn't touched applesauce in at least a year.
Yesterday, Flint learned how to put on my socks and shoes! And she got them on perfectly!
This is such a big YAY for both kids. And such a huge difference in developmental abilities. 


Sunday we went to a birthday party. Both kids had an absolute blast. A couple things of note: Galen hugged someone he'd never met (a long time school friend of mine I haven't seen since getting married). He had no idea who she was, but he gave her a hug.
He touched the birthday cake icing (oops). He didn't eat it, but he played with it!
Flint did her usual thing of playing with all the things, especially the puppy dog.

Today we had Galen's Physical Therapy evaluation that was FINALLY scheduled last week after being requested give or take 6 months ago. In other words, they'd seen enough of him to know he'd need it (the first evaluation was on day 1 evaluation, and they've been keeping tabs on him the last year to see how he is when comfortable/more comfortable). He averages an 18 month score for physical therapy (this is where he falls for everything really, except speech). So, duh, he qualifies. It will be starting in a couple weeks if Medicaid doesn't screw up.
We also went and visited with Grammy and Auntie Karen. I have many videos and pictures, but haven't uploaded them yet. The kids had a great time playing with musical instruments. Daddy's side of the family is definitely the more musical side and the kids will probably get lessons from them at some point.

Oh, and Galen will be returning to his preschool program in a couple weeks too. August has turned into a bit of a busy month.
Especially since we have news that I'm breaking right now. Mazzu is returning to college the end of August to finish off his Engineering Bachelor's.

Updates

So this happened today:1.) I bought a platform swing for the kids (since making one never happened). They both want to play with it already. We still need something to get it hanging, but that should be easier to do.

Once again, thank you to everyone who helped fund this!!2.) I bought Play-Doh for the kids since Flint discovered some "sample" ones we got when Galen was a baby. Galen still wants to eat it.














Other things that need updating will eventually happen, but the short version is that Galen had a re-evaluation and scored poorly again. On the things he had gone up on, he made 4 months growth in 14 months time and went down on other things. They don't think he's actually regressed, so much as, he didn't want to do stuff. But, he still scores lower than Flint on most things. Flint was evaluated as well and came out as right on target, even a little ahead on a couple things. I try not to compare the kids, but sometimes it's really hard not to. Like when Flint learned how to do a zipper, I was shocked. Galen still can't. And it turns out that's something that's right on developmentally for her age.

Galen finished his HISD preschool program at the end of May. It's now Summer and we've been doing ABCmouse.com daily for at least an hour, sometimes 2-3 hours. Today we did about 110 minutes. We've only not done it one day and it was Daddy's birthday on Monday. Seems the kids could tell something was different I guess. Could just be the heat though. It's so hot outside, the house can't even start to compete. He returns to school next month. We're going to try it again since he was doing pretty well after the first few days and really loves his "school"/"learning" on ABCmouse.com.

Day 1

End of semester party

We've been working on "want" and "more" in sign language. The therapy issues have cleared up, so Galen's been back with both therapists again. For now, one of us goes with him every therapy session. He was once going by himself, but he refuses to do anything without one of us in there now.

Have stuff to update, but not in the mood right now, except for this:

Check my babies out!

Huge Update

So it's been awhile since I updated.
We haven't managed to get the swing built yet, but I did finally make a sensory bottle for the kids.
Momzi, PawPaw, and Grandma moved to Las Vegas. We helped them pack and got some free stuff from them. We've visited their storage units a couple times in the past couple months. Galen and Flint really enjoy being able to run around it freely while we work.

It's amazing how much can change in a month. Galen's really enjoying being outside all the time and is exploring more things, like daddy's ladder. We've had a huge problem with him being scared of the fenced-in backyard, so we had to go in the front yard all the time. Well, I left the back door open, after locking the cats up, and Galen finally came out on his own accord, and so now, he'll go into the backyard more often and have lots of fun.

Now for probably the biggest news since my last post. HISD finally got back to us about getting Galen into the preschool for children with disabilities program last week. He officially started Mon. I haven't posted about it. I was terrified that he'd be miserable all day. I've always wanted to do homeschooling, but all these specialists said it would be wonderful for Galen, so I felt like I had to at least try. Well, day 3 has come and gone now. None of these days have actually been the full time because of previously scheduled appointments and his normal therapy days. He's tried matching, and exploring the room, and only cried when it was nap time (which he doesn't do) on Mon (he hasn't been there long enough the other days), because the lights were turned off.
Yesterday he had a make-up therapy day and played with water in a bucket and actually enjoyed it. This is a win, a small one, but a win. He's petrified of baths still here. I bought a water toy for him, which we set up tonight, but he was scared of it. I have faith he'll love it in a few days.

Now, for the astonishingly good news...

Galen ate a blueberry waffle and considered a cutie orange at school today. He even tried to help clean up. And he isn't throwing his food on the floor before eating it either! Then, at therapy, we did food stuff again, and after avoiding the jalapeno Cheetos for the past 4 tries, he finally tried it and just kept eating them.

So, it would seem, Galen is doing awesome at school, and while I wanted to homeschool him, this may be the best place for him. Of course, I think we'll re-evaluate when he would start kindergarten. But by then, he'll hopefully be talking, and will be able to give us input on what he'd like to do.
It's been extremely weird without him here with us. But, we've made astonishing progress on cleaning up the sunroom and hanging out with Flint by herself and she even played outside by herself, because she never minded the backyard and we can see her.
The sunroom is slowly being converted into a kid's playroom. It will need some sort of air (window a/c) to make it more comfortable, especially with the horrid summer ahead. But, it'll be nice to be able to have a room they can really play in year round, that's not just a bedroom.

Sensory Board Completed!

Since my last post, we took the kids to the Homeschooling Park day and didn't manage very long. Maybe an hour, but the kids absolutely had a blast, once they got accustomed to where we were.
Galen's been interested in going out more. We've gone to Goodwill twice in the last month for Galen to explore (and gotten a few toys to help his development), Harbor Freight once, and the Kroger grocery store twice in the last week with both kids. He's been very insistent on going out. Last week, he ran outside and got in the car in just his pull-up because Flint was going to the store with daddy, so we put him in clothes, and all went out.

So, as the title says, we finished the homemade sensory board. Completed for approximately $100. Incredible deal for the happiness it gives the kids. The swing will be starting in a few weeks. We're still researching it to make it as safe as possible.

Cole Therapy has combined Galen's Occupational and Speech therapies into one hour on Wednesday's and Thursday's. He's being tag-teamed by 2 therapists and is doing well. It started this way on Thursday and both therapists were excited and very hopeful after how well he did that day. More specifically, he was engaged with both therapists; watched the speech therapist read the entire book to him while she held it (usually he looks away or screams); and they plan to work on his feeding skills together. They know he needs to work on other skills, but his feeding skills are really bad, so they think they should tag-team that first, along with other skills being worked on in the background. We need to get white place mats because they'll apparently help make the food the most interesting thing he sees and will help get him off of "on the go" eating (crackers, pretzels, etc).
He has been playing with more foods and seemingly interested in them lately again too. He even played with gummy bears for a good 5 or so minutes today! And played with a see n' say for 5 minutes a few days ago.
Anyway, I'm going to stop here.