It's been awhile since I updated. The kids are doing pretty fantastic most of the time. They are thriving in dance class with Miss Mistie. They love being outside.
The biggest update we have at the moment is this:
Galen and Flint's Autism Adventures book is officially published!
Flint, Mommy, and Galen
Showing posts with label Aspergers. Show all posts
Showing posts with label Aspergers. Show all posts
Thursday, March 29, 2018
Monday, January 11, 2016
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.
Tuesday, April 21, 2015
Today was AWESOME
Today we saw a developmental pediatrician who sent us for genetics blood work testing. It's going to be months before we find out anything about it, but it's supposed to identify if there are any chromosomal issues or if he might have "fragile x syndrome". She also wants us to go see a "feeding clinic" she called it. To try and figure out why Galen tends to eat only certain foods. Which textures he may not like, etc. I'm waiting on a call back from them since there's apparently 3 versions of said clinics at this hospital and I have no idea which one she wanted us to go to.
He did REALLY well today. He was in a good mood and everything! Despite being awoken so early. He even used a crayon to draw lines like the dr was doing (and didn't try to eat it!!! Score!). He managed to put a square, triangle, and circle in a puzzle-like thing, even after she flipped it a few different times (it took him some time to figure out what was different, but he got it). He even put blocks into a cup like the dr did over and over again. He tried to say "bye bye" at the trucks and cars driving by when the dr did. He wouldn't play with the ball though, which was strange.
He had an "abnormal gait" which Mazzu thought was just because he was tired, but it seemed close to how he generally walks to me, so that's what she went with. And he did wonderful with snuggling and smiling at the dr.
He even responded properly to "you can't escape right now Galen" (i.e. we aren't leaving yet) 3 or 4 times. The door handles there are ones he can open himself, so that was awesome. The last 2 times we've been there, he kept trying to leave and we had to grab him.
In other words, today went really well. She wants us back in 6 months (coincidentally, on my 31st birthday). I laughed when I saw the date they gave Mazzu (I was keeping Galen busy while signing out). He even fell asleep in the car on the way home (so very unusual!). Afterwards, he and daddy hung out at home while I took Flint for her booster flu shot, then came home too.
A couple hours ago, he and daddy went out for about an hour, so Flint and I had some mommy and me only time. Galen was naked and daddy started to leave and he ran to the door and insisted "go" with daddy. He even let daddy dress him so he could go with.
Galen got a treat tonight for being so very good today: french fries. One of his favorite foods. He barely ate them (that was surprisingly unexpected).
He did REALLY well today. He was in a good mood and everything! Despite being awoken so early. He even used a crayon to draw lines like the dr was doing (and didn't try to eat it!!! Score!). He managed to put a square, triangle, and circle in a puzzle-like thing, even after she flipped it a few different times (it took him some time to figure out what was different, but he got it). He even put blocks into a cup like the dr did over and over again. He tried to say "bye bye" at the trucks and cars driving by when the dr did. He wouldn't play with the ball though, which was strange.
He had an "abnormal gait" which Mazzu thought was just because he was tired, but it seemed close to how he generally walks to me, so that's what she went with. And he did wonderful with snuggling and smiling at the dr.
He even responded properly to "you can't escape right now Galen" (i.e. we aren't leaving yet) 3 or 4 times. The door handles there are ones he can open himself, so that was awesome. The last 2 times we've been there, he kept trying to leave and we had to grab him.
In other words, today went really well. She wants us back in 6 months (coincidentally, on my 31st birthday). I laughed when I saw the date they gave Mazzu (I was keeping Galen busy while signing out). He even fell asleep in the car on the way home (so very unusual!). Afterwards, he and daddy hung out at home while I took Flint for her booster flu shot, then came home too.
A couple hours ago, he and daddy went out for about an hour, so Flint and I had some mommy and me only time. Galen was naked and daddy started to leave and he ran to the door and insisted "go" with daddy. He even let daddy dress him so he could go with.
Galen got a treat tonight for being so very good today: french fries. One of his favorite foods. He barely ate them (that was surprisingly unexpected).
Wednesday, April 15, 2015
Background and Diagnosis
We suspected for a long time that something was different about Galen. When he was a baby, he was hitting the developmental milestones, but he never really seemed "normal" to me. Around the time we found out we were pregnant with Flint, he seemed to get less "normal" and I started watching his behaviors even closer. The pediatrician didn't think anything was wrong with him at his 15 month check up, but at the 18 month check up, I insisted that I wanted him tested for Autism (the check list indicated a couple of "Autism signs", but the pediatrician still wasn't concerned).
She went ahead and printed out the paperwork for a referral since I insisted and we filled it out. It finally got through to Texas Children's Autism Clinic the week before Flint was born (Sept 2014; Galen was 21 months when Flint arrived). He continued to hit some milestones, but didn't seem to be developing "normally" still. Then it seemed like he'd forgotten some of the stuff he'd learned (he'd done that at 13 months as well, except that he then proved he still knew it when I started to tell someone my concerns).
We got on the 3-5 month waiting list and finally got seen in April 2015, which was actually 6 1/2 months after getting on the waiting list. He was first seen on March 30, 2015. After a 3 hour evaluation, we had a 2 week wait to find out the results.
On April 13, 2015, Galen was officially diagnosed as Autistic with other developmental issues. His highest skills are of an 18 month old and his lowest are of a 6 month old, and he's 28 months old currently. These are what were seen during testing and gathered from a questionnaire I filled out. I honestly think he might actually be farther than that, but testing was only one day and based on our own experiences. He has been showing signs of development that the dr actually said made no sense based on his testing, he shouldn't be able to do it (sorting blocks by colors).
We were given a ton of referrals for Galen to get help with speech, motor skills, and other things. Yesterday I spent the day looking over the referral stuff and attempting to process the diagnosis. It was entirely expected, but it still gives me a "now what?" feeling looking at everything he will need help with. Today I spent the day reading the "What to do in the first 100 days after diagnosis" stuff we were given. I haven't finished it (it's not that long, honestly, but my dyslexia makes reading difficult). The dr was worried we were going to have a lot of problems understanding what she was telling us, but thankfully with my background in Psychology, I understood the vast majority of what she was saying to us.
Some of the differences we noticed as a baby are:
he smiled, but infrequently
didn't really respond to his name
seemed totally in his own world all the time
didn't really enjoy toys
wasn't really interested in pointing at stuff
couldn't be interested (at all) at house Christmas lights
incredibly dependent (wouldn't sleep in a crib or without me 75% of the time)
wouldn't sleep alone, even by 18 months
learned many words and spoke them, then seemed to forget them all
wouldn't wave bye bye, clap hands (occasionally, not generally)
hasn't learned high fives
wouldn't pretend play
Once Flint was born:
he didn't want anything to do with her
wouldn't hold her or feed her
pushes her away when she tries to play with him
The BIGGEST sign (to me) was that Galen puts EVERYTHING in his mouth. Bottle cap lids, metal, pencils, crayons, pens, paper; he doesn't distinguish between things. It tends to mean he's hungry or that he's tired and wants his pacifier.
In total, I feel a sense of relief for being right (that something is unusual about Galen's behavior) and a sense of scaredness for what the future will hold with all these appointments with new people and stuff like that that we have to do now.
She went ahead and printed out the paperwork for a referral since I insisted and we filled it out. It finally got through to Texas Children's Autism Clinic the week before Flint was born (Sept 2014; Galen was 21 months when Flint arrived). He continued to hit some milestones, but didn't seem to be developing "normally" still. Then it seemed like he'd forgotten some of the stuff he'd learned (he'd done that at 13 months as well, except that he then proved he still knew it when I started to tell someone my concerns).
We got on the 3-5 month waiting list and finally got seen in April 2015, which was actually 6 1/2 months after getting on the waiting list. He was first seen on March 30, 2015. After a 3 hour evaluation, we had a 2 week wait to find out the results.
On April 13, 2015, Galen was officially diagnosed as Autistic with other developmental issues. His highest skills are of an 18 month old and his lowest are of a 6 month old, and he's 28 months old currently. These are what were seen during testing and gathered from a questionnaire I filled out. I honestly think he might actually be farther than that, but testing was only one day and based on our own experiences. He has been showing signs of development that the dr actually said made no sense based on his testing, he shouldn't be able to do it (sorting blocks by colors).
We were given a ton of referrals for Galen to get help with speech, motor skills, and other things. Yesterday I spent the day looking over the referral stuff and attempting to process the diagnosis. It was entirely expected, but it still gives me a "now what?" feeling looking at everything he will need help with. Today I spent the day reading the "What to do in the first 100 days after diagnosis" stuff we were given. I haven't finished it (it's not that long, honestly, but my dyslexia makes reading difficult). The dr was worried we were going to have a lot of problems understanding what she was telling us, but thankfully with my background in Psychology, I understood the vast majority of what she was saying to us.
Some of the differences we noticed as a baby are:
he smiled, but infrequently
didn't really respond to his name
seemed totally in his own world all the time
didn't really enjoy toys
wasn't really interested in pointing at stuff
couldn't be interested (at all) at house Christmas lights
incredibly dependent (wouldn't sleep in a crib or without me 75% of the time)
wouldn't sleep alone, even by 18 months
learned many words and spoke them, then seemed to forget them all
wouldn't wave bye bye, clap hands (occasionally, not generally)
hasn't learned high fives
wouldn't pretend play
Once Flint was born:
he didn't want anything to do with her
wouldn't hold her or feed her
pushes her away when she tries to play with him
The BIGGEST sign (to me) was that Galen puts EVERYTHING in his mouth. Bottle cap lids, metal, pencils, crayons, pens, paper; he doesn't distinguish between things. It tends to mean he's hungry or that he's tired and wants his pacifier.
In total, I feel a sense of relief for being right (that something is unusual about Galen's behavior) and a sense of scaredness for what the future will hold with all these appointments with new people and stuff like that that we have to do now.
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