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 Developmental Issues. Show all posts
Showing posts with label Developmental Issues. Show all posts
Thursday, March 29, 2018
Wednesday, September 28, 2016
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.
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.
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.
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| #Tinkergarten |
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| Dance Class |
Friday, July 8, 2016
Wednesday, April 27, 2016
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.
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.
Monday, March 14, 2016
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.
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.
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.
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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