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.
Flint, Mommy, and Galen
Sunday, November 22, 2015
Tuesday, November 10, 2015
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.
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.
Saturday, August 22, 2015
I haven't updated in awhile...
So here goes.
We took Galen and Flint to the park on July 3rd and Galen not only socialized, but even played in the water feature all on his own! It was an absolute blast!
On July 4th we went to see Grandma, Momzi, and Paw Paw. Galen sang "dead or alive" a few times. He'd never done so before. That was so awesome! But he's still afraid of fireworks.
We received a couch and a chair from Grammy and Grandpa and the kids absolutely love them!
Then we had a play date with a slightly older Autistic boy and Galen and Flint had a blast! Galen even played well with him though he'd never met him before.
A couple days later we all went to a baby shower. Galen absolutely loved it and made the place his own! He shared and played with balls and balloons with all sorts of adults and even a kid. His favorite part was the dog. He chased the dog and the dog chased him.
Then it was daddy's birthday. We went to a restraunt and took bubbles with us to keep Galen calm. He really LOVES bubbles now! He did pretty well, but had to be put in a high chair (which he hates) since he was trying to run off.
Galen did trip and bite through his lip towards the end of July and currently has a scar. :(
A good portion of July ended in doing nothing but staying home. The 104 degree weather was just too hot to do anything.
For Gran's birthday, August 1st, we went and saw her. It was such a great day. Galen hasn't seen her much and Flint's only seen her the twice now, but they were great together. He was running around like he owned the place! It was still a pretty warm day, so we stayed inside most of it, but towards the end of the day, we went outside and got some great pictures of the kids with Gran.
August has been a pretty lazy month since it's still hot out, the van's radiator broke, and I've been sick.
Galen has discovered the love of swinging in his therapy and also loves Brown Bear, Brown Bear by Eric Carle now. He tries to say the words in the book now. So Gran sent us a copy for the kids. :)
This isn't a very personable post, in my opinion, but I did want to update Galen's Autism Adventure, and don't really feel up to thinking at the moment, but t's been just shy of 2 months since I updated it.
We took Galen and Flint to the park on July 3rd and Galen not only socialized, but even played in the water feature all on his own! It was an absolute blast!
On July 4th we went to see Grandma, Momzi, and Paw Paw. Galen sang "dead or alive" a few times. He'd never done so before. That was so awesome! But he's still afraid of fireworks.
We received a couch and a chair from Grammy and Grandpa and the kids absolutely love them!
Then we had a play date with a slightly older Autistic boy and Galen and Flint had a blast! Galen even played well with him though he'd never met him before.
A couple days later we all went to a baby shower. Galen absolutely loved it and made the place his own! He shared and played with balls and balloons with all sorts of adults and even a kid. His favorite part was the dog. He chased the dog and the dog chased him.
Then it was daddy's birthday. We went to a restraunt and took bubbles with us to keep Galen calm. He really LOVES bubbles now! He did pretty well, but had to be put in a high chair (which he hates) since he was trying to run off.
Galen did trip and bite through his lip towards the end of July and currently has a scar. :(
A good portion of July ended in doing nothing but staying home. The 104 degree weather was just too hot to do anything.
For Gran's birthday, August 1st, we went and saw her. It was such a great day. Galen hasn't seen her much and Flint's only seen her the twice now, but they were great together. He was running around like he owned the place! It was still a pretty warm day, so we stayed inside most of it, but towards the end of the day, we went outside and got some great pictures of the kids with Gran.
August has been a pretty lazy month since it's still hot out, the van's radiator broke, and I've been sick.
Galen has discovered the love of swinging in his therapy and also loves Brown Bear, Brown Bear by Eric Carle now. He tries to say the words in the book now. So Gran sent us a copy for the kids. :)
This isn't a very personable post, in my opinion, but I did want to update Galen's Autism Adventure, and don't really feel up to thinking at the moment, but t's been just shy of 2 months since I updated it.
Monday, June 29, 2015
Today's Update
Today Galen did something really awesome. He was playing with a Mrs. Claus doll all by himself, clapping her hands together. It looked like he was pretend playing! And he's been playing patty cake and "Where's Galen?" with me again. It's been months since he's been interested in those things.
He's been snuggling with Flint more too.
Sibling love! Right after this picture, Galen grabbed Flint even tighter and she accidentally fell to the floor. Mazzu grabbed her and Galen got off of me (I picked him up) to check on Flint. I took some more pictures, but they're so blurry.
He's been snuggling with Flint more too.
Sibling love! Right after this picture, Galen grabbed Flint even tighter and she accidentally fell to the floor. Mazzu grabbed her and Galen got off of me (I picked him up) to check on Flint. I took some more pictures, but they're so blurry.
Friday, June 26, 2015
Updates
Wednesday: Galen did wonderful at therapy. And even more awesome, I took a bath with bubbles. Galen came and played with them some, then Flint got in and splashed with me, then Galen came back again. He put his hands in and even his foot twice. I told him he didn't have to get in, but could if he wanted and it sounded like he said 'maybe'. He didn't actually get in, but progress!
He's even been snuggling Flint more!
Last night he said (or I interpreted the sounds as) "I love baby and baby love me". :)
Today I did an hour walking at the store pushing grocery carts around with Mazzu and the kids. The kids actually did pretty well. Galen usually screams about being in a cart, so here's hoping he'll be better with them now. Flint didn't really care either way most of the time.
It's been extremely awesome that Galen loves bubbles now! Grammy (Mazzu's mom) gave us 2 bottles of bubbles. Galen's loved them so much, that I bought a couple of bubble guns since blowing them ourselves was wearing thin with my asthma. It arrived today and already one of them is almost out of bubbles. But I also bought stuff to make our own bubbles from a Pinterest recipe.
Yesterday Galen did wonderful at Occupational Therapy, but did really bad at Speech Therapy. There's good reason though. He had another fill-in speech therapist and this one was downstairs instead of in the same room as all the other therapists have been. This therapist said he screamed for 30 minutes, then fell asleep, so we left early. This therapist and I decided that Galen needs more consistency, so we've put it in his file, that for right now, he needs to see his specific therapists every time. Last week he did pretty well with the couple fill-in therapists, but I think the big clincher was being in a different room than the others have been.
He's even been snuggling Flint more!
Last night he said (or I interpreted the sounds as) "I love baby and baby love me". :)
Today I did an hour walking at the store pushing grocery carts around with Mazzu and the kids. The kids actually did pretty well. Galen usually screams about being in a cart, so here's hoping he'll be better with them now. Flint didn't really care either way most of the time.
It's been extremely awesome that Galen loves bubbles now! Grammy (Mazzu's mom) gave us 2 bottles of bubbles. Galen's loved them so much, that I bought a couple of bubble guns since blowing them ourselves was wearing thin with my asthma. It arrived today and already one of them is almost out of bubbles. But I also bought stuff to make our own bubbles from a Pinterest recipe.
Yesterday Galen did wonderful at Occupational Therapy, but did really bad at Speech Therapy. There's good reason though. He had another fill-in speech therapist and this one was downstairs instead of in the same room as all the other therapists have been. This therapist said he screamed for 30 minutes, then fell asleep, so we left early. This therapist and I decided that Galen needs more consistency, so we've put it in his file, that for right now, he needs to see his specific therapists every time. Last week he did pretty well with the couple fill-in therapists, but I think the big clincher was being in a different room than the others have been.
Saturday, June 20, 2015
First Birthday Party Experience Ever
Excluding Galen's own 2 birthday "parties" that is. Those were small since he was sick his 1st birthday and we were dealing with ceiling repairs for his 2nd birthday, and since he doesn't understand anyway, it was mostly for us, so just cake and a couple gifts.
We went to a friend's son's 2nd birthday party today. Galen and Flint threw fits about having to go anywhere today, but we went anyway. When we got there, Galen ran to the front door to try and leave immediately. I'd told him we could leave when he wanted to. I asked him to try it for a couple minutes but if he still wanted to leave, we would. Well, he discovered their backyard when we took the kids back there with the other guests. He sat on the swing with Mazzu while Flint and I explored the kiddie pools with another friend's daughter. For reference, we hadn't actually met these kids yet.
We went back in after awhile to get some snacks and because it's really hot out. Galen ran to the door to go back outside and another adult took him outside. I was shocked! Galen not only went out the door with the nice man, but was swung some on the swing by him, then walked around with him, and climbed in his lap. And then he got interested in the kiddie pools and even got in it! I took Flint back outside to check on Galen. But Galen was having a blast. Flint enjoyed being held by the nice man too.
We did come back in since it was still hot and they were getting ready for gifts and cake, etc. At which point, Galen started getting extremely grumpy and ready to go home again. He went to the door a few times and started crying like he does, so I gave him my phone with Bo on the Go playing on youtube and we started getting set up to leave.
We gave the friend and her daughter a lift home since her hubby had to go to work and they live about 10 minutes from us. Galen did pretty good with that too. Didn't even seem phased. Van's are good for extra people.
So, the moral of this post is this: Today was an awesome day!
Friday, June 19, 2015
Go Galen Go!
Today we had to do an OT make-up session since his Weds lady cancelled. So he saw the same lady as yesterday (not his normal one either) again. She said she was proud of him. He played ball some, put pegs in the game (about 1/2 of them), and even kept eye focus on her a few minutes while she sang to him. He didn't even cry when she made him walk back to the front. He did so great today!
Yesterday (or the day before yesterday, it's hard to keep track), we came home from his therapy and he played ball with me for 30 minutes straight. There was probably 10-15 minutes were he lost focus, but I could get him back to playing with me (and Mazzu sometimes too). I told this therapist that and she said that was "really good".
Yesterday (or the day before yesterday, it's hard to keep track), we came home from his therapy and he played ball with me for 30 minutes straight. There was probably 10-15 minutes were he lost focus, but I could get him back to playing with me (and Mazzu sometimes too). I told this therapist that and she said that was "really good".
Thursday, June 18, 2015
Since I haven't updated in a while, here's the updates.
Galen's hearing is fine. They actually managed to successfully test him without having to sedate him.
I started in with the calls today. Requested that the neurologist try to get the genetics testing done again, since we changed insurance and the other one wouldn't approve it. Got tired of waiting to hear about the MRI results, so now I have them. MRI results were mostly normal. I expected as much since they hadn't called for a follow-up one. Nothing to explain developmental delays. Nothing serious, but there was a few differences. Apparently they're common differences seen with developmental delays, and we'll find out more about them at our November appointment. He said Galen's brain looked really good for his age.
Yesterday makes 2 weeks at Cole Pediatric Therapy. With the storm, he only saw the speech therapist yesterday. But, he did do a puzzle with her for awhile, and at one point, she asked him if he wanted to do the puzzle more and he said "nope" to her. She was surprised by it. I haven't seen a huge difference, but I imagine with all therapies, it'll take awhile to see big differences. He has been trying to say "tea" more when he wants my tea though.
He's also been trying to play with Flint more from time to time. A couple days ago, he tried to pick her up even!
One big surprise was his reaction to Grammy and Grandpa. While he didn't really recognize them, he didn't freak out and scream horribly either. And even ate a slice of the pizza they brought. He got fed up of being around them (expected), but it was probably a good 20-30 minutes before he did so.
Oh, and during the storm, Mazzu went outside (trash day) and Galen kept standing at the door looking out. He voluntarily went outside while it was raining and even got a little wet. He was having fun anyway. Maybe the random scared of water and the bathroom stage is coming to an end. I can definitely hope anyway!
I started in with the calls today. Requested that the neurologist try to get the genetics testing done again, since we changed insurance and the other one wouldn't approve it. Got tired of waiting to hear about the MRI results, so now I have them. MRI results were mostly normal. I expected as much since they hadn't called for a follow-up one. Nothing to explain developmental delays. Nothing serious, but there was a few differences. Apparently they're common differences seen with developmental delays, and we'll find out more about them at our November appointment. He said Galen's brain looked really good for his age.
Yesterday makes 2 weeks at Cole Pediatric Therapy. With the storm, he only saw the speech therapist yesterday. But, he did do a puzzle with her for awhile, and at one point, she asked him if he wanted to do the puzzle more and he said "nope" to her. She was surprised by it. I haven't seen a huge difference, but I imagine with all therapies, it'll take awhile to see big differences. He has been trying to say "tea" more when he wants my tea though.
He's also been trying to play with Flint more from time to time. A couple days ago, he tried to pick her up even!
One big surprise was his reaction to Grammy and Grandpa. While he didn't really recognize them, he didn't freak out and scream horribly either. And even ate a slice of the pizza they brought. He got fed up of being around them (expected), but it was probably a good 20-30 minutes before he did so.
Oh, and during the storm, Mazzu went outside (trash day) and Galen kept standing at the door looking out. He voluntarily went outside while it was raining and even got a little wet. He was having fun anyway. Maybe the random scared of water and the bathroom stage is coming to an end. I can definitely hope anyway!
Thursday, June 4, 2015
Update
Last Friday was Galen's rescheduled MRI. It was really scary having him sedated. One minute he was wide awake screaming, and the next, he was unconscious. It went really well though and now we're just waiting on the results.
We started with Cole Pediatric Therapy yesterday. The speech therapist yesterday was surprised at how affectionate Galen was to me. They had me come in to discuss what they want to work with him on. The first 30 mins was OT and all he did was scream. Then for ST, he climbed on me and fell asleep, so nothing actually happened in that hour, except they talked to me. She was surprised how much I knew and that I was already in the "acceptance" phase of his Autism diagnosis. And that I'm fully aware that Galen's the same kid he always was. She commented that a lot of parents don't believe the diagnosis and won't accept it. Today Mazzu took Galen alone and he apparently did much better. He actually participated and watched the OT therapist today. He did a shapes in holes puzzle. And participated some during ST alone with the lady. Responded to "no" once and said something like "opps" when he dropped something and said "mama" at least once, then started crying, so they let him leave early. They got home when his ST was supposed to be just ending, so only like 10-15 mins early, but he did much better today. And it was only day 2. So here's hoping it'll really help him!
He has an audiology testing on Monday, but we'll probably have to get him sedated for it, but they have to try without it first. The ST yesterday agreed with me that that's probably how it will be because that's how it usually happens with Autistic kids. But it's also hard to distinguish between Autism and hearing loss/deafness at 2 1/2 she said. I still think his hear's fine, but best to get him checked out to confirm it.
We started with Cole Pediatric Therapy yesterday. The speech therapist yesterday was surprised at how affectionate Galen was to me. They had me come in to discuss what they want to work with him on. The first 30 mins was OT and all he did was scream. Then for ST, he climbed on me and fell asleep, so nothing actually happened in that hour, except they talked to me. She was surprised how much I knew and that I was already in the "acceptance" phase of his Autism diagnosis. And that I'm fully aware that Galen's the same kid he always was. She commented that a lot of parents don't believe the diagnosis and won't accept it. Today Mazzu took Galen alone and he apparently did much better. He actually participated and watched the OT therapist today. He did a shapes in holes puzzle. And participated some during ST alone with the lady. Responded to "no" once and said something like "opps" when he dropped something and said "mama" at least once, then started crying, so they let him leave early. They got home when his ST was supposed to be just ending, so only like 10-15 mins early, but he did much better today. And it was only day 2. So here's hoping it'll really help him!
He has an audiology testing on Monday, but we'll probably have to get him sedated for it, but they have to try without it first. The ST yesterday agreed with me that that's probably how it will be because that's how it usually happens with Autistic kids. But it's also hard to distinguish between Autism and hearing loss/deafness at 2 1/2 she said. I still think his hear's fine, but best to get him checked out to confirm it.
Wednesday, May 27, 2015
2 Weeks Paci Free!
Today marked 2 weeks paci free! Woohoo! The first few days were difficult, but it got easier. Every once in awhile I can't help thinking I had one to get him to sleep, but that would be a horrible idea, and that's why we went cold turkey and threw them all out.
He's speaking some more. I still can't understand what he's saying most of the time, but we should start speech therapy and occupational therapy next week, assuming Medicaid doesn't fall through.
He's actually seeking out our attention a little more too! He just came over and talked to me while I type this. This week he's been eating more foods again. I don't suspect it will last, but I'm so happy when he does it. He's stealing off our plates and bowls and even eating off a plate on the floor sometimes. Still usually putting food on the floor off the plate first, but hasn't really been dumping it the past few days.
He has his MRI on Fri since we had to reschedule it last week when Mazzu and I both came down with a stomach virus. Thankfully neither kid did, but it was best to be safe.
This week has been kinda rough. Houston was hit hard with flooding Monday night. Our street flooded some, but the worst thing that happened to us was that the power went out for 7 hours. This was bad for the kids. The house got so hot they wouldn't sleep. Once the power was back on, they fell asleep pretty quickly, even with the storm still going.
I'm happy to say that Galen and Flint don't appear to be frightened by loud storms at least. We didn't take them outside, of course, but they didn't seem phased by anything except the power being out. Mazzu and I kept jumping from time to time with the loud thunder.
At the moment, I'm looking into buying used clothes for the kids. We're running low on clothes that fit them and with the twice a week therapies for Galen, well, having different clothes on each day would be good. I even bought myself a new shirt since my old clothes are too big now, like this one Galen wore as a dress (he loves the feel of the fabric more than I do!):
He's speaking some more. I still can't understand what he's saying most of the time, but we should start speech therapy and occupational therapy next week, assuming Medicaid doesn't fall through.
He's actually seeking out our attention a little more too! He just came over and talked to me while I type this. This week he's been eating more foods again. I don't suspect it will last, but I'm so happy when he does it. He's stealing off our plates and bowls and even eating off a plate on the floor sometimes. Still usually putting food on the floor off the plate first, but hasn't really been dumping it the past few days.
He has his MRI on Fri since we had to reschedule it last week when Mazzu and I both came down with a stomach virus. Thankfully neither kid did, but it was best to be safe.
This week has been kinda rough. Houston was hit hard with flooding Monday night. Our street flooded some, but the worst thing that happened to us was that the power went out for 7 hours. This was bad for the kids. The house got so hot they wouldn't sleep. Once the power was back on, they fell asleep pretty quickly, even with the storm still going.
I'm happy to say that Galen and Flint don't appear to be frightened by loud storms at least. We didn't take them outside, of course, but they didn't seem phased by anything except the power being out. Mazzu and I kept jumping from time to time with the loud thunder.
At the moment, I'm looking into buying used clothes for the kids. We're running low on clothes that fit them and with the twice a week therapies for Galen, well, having different clothes on each day would be good. I even bought myself a new shirt since my old clothes are too big now, like this one Galen wore as a dress (he loves the feel of the fabric more than I do!):
Thursday, May 14, 2015
Long Week Almost Over
As much as I hate phones (and I DO, so much so that I hate calling the doctor's for myself), I keep making calls for Galen. I set up his MRI and an Audiology appointment today. Also called to find out how to get his blood work done for the full genetics testing they wanted us to do. And still waiting to find out how to get his "feeding clinic" test done. Apparently they're figuring that out at least, since I've called twice now, and they weren't sure either (figures, right?).
They'll be sedating Galen for the MRI. They plan to try the Audiology testing without sedation and then try it again with it if they can't get what they need without it (I imagine Galen won't cooperate well, but I don't know what's involved in it either). I'm assuming that his hearing is fine since it's always been fine with the checkups they do, but then again, with all his regressions, it could be possible he's losing his hearing and that's why he's seemingly regressing (I think that's the neurologist's thoughts, anyway).
And now it's time to get myself ready for the dentist fun that's to begin in an hour. I should be just about mentally prepared by then (hopefully!).
EDIT: So Medicaid is...fun. They have misplaced Flint's dental. So Galen was seen and Flint wasn't. The lady even called Medicaid and told them she was holding the card with the proper information on it for Flint.
On the other hand, all they'd do is wipe her mouth with cloth anyway we were told.
Galen did pretty well. He was quite scared but it was over quickly (maybe 5 mins) and we go back in 3 months. Theoretically both kids will be seen that time. He has no cavities and we need to get him drinking more water (for some unclear reason), but he usually likes water, so I guess that's a plus side.
EDIT: So Medicaid is...fun. They have misplaced Flint's dental. So Galen was seen and Flint wasn't. The lady even called Medicaid and told them she was holding the card with the proper information on it for Flint.
On the other hand, all they'd do is wipe her mouth with cloth anyway we were told.
Galen did pretty well. He was quite scared but it was over quickly (maybe 5 mins) and we go back in 3 months. Theoretically both kids will be seen that time. He has no cavities and we need to get him drinking more water (for some unclear reason), but he usually likes water, so I guess that's a plus side.
Wednesday, May 13, 2015
Update 5-13-15
Well, it turns out, the pizza thing was NOT a breakthrough. He quickly returned to only eating cheerios.
Yesterday we saw a neurologist. She asked why we were referred on the paperwork and I said I had no idea, so she read over the paperwork so far, and she came in and said she had no idea either. On the other hand, she did know that the genetics tests we had had come back and showed all normal. The only thing she wanted to test for had already been tested for in that genetics blood workup. She went ahead and consulted with an older guy who I'm guessing had more experience though, just to be certain, and he thought we should have more thorough genetics testing done (apparently we didn't have the most thorough one to start with), along with an MRI to see if they can figure out why Galen developed Autism. He also mentioned that Galen's head is smaller than expected and he's a bit thin.
EDIT: She wants him to have a hearing test done (a proper one), just in case.
The neurologist lady was the 2nd professional to tell us that Flint's perfectly fine. Apparently she could tell that just from the few mins of watching her while evaluating Galen. She kept smiling at us, engaging us, and even reached for the lady's hand when she put it in front of her to shake it (after shaking mine and Mazzu's hands).
Today we had a therapy evaluation from Cole Pediatric Therapy. It's determined that Galen is about on par for physical therapy, so nothing needs working on for that at the moment. He'll be receiving occupational and speech therapy twice a week, Weds and Thurs's for 1 1/2 hours, starting in June. His speech evaluation showed him to be in the 50-60 range when he should be in the 80-100 range. Basically, he's VERY far behind in speech. I wish I had followed my instincts last year, but then he spoke and showed he still knew how, so I didn't. I can't fix that, but I know my instincts are important to follow.
One unfortunately "fun" thing to come...cold turkey on pacifiers. Galen's teeth are getting a little messed up and is causing some issues with his speech. It seems he does have a bit of a tongue tie, but is saying the sounds he wouldn't be able to if it needed fixing according to the speech therapist.
Tomorrow we see the dentist for both kids. Galen's 6 months behind and has only seen them twice. Flint's 2 months behind and still has no teeth and hasn't seen them before. Expecting it to be fun.
Yesterday we saw a neurologist. She asked why we were referred on the paperwork and I said I had no idea, so she read over the paperwork so far, and she came in and said she had no idea either. On the other hand, she did know that the genetics tests we had had come back and showed all normal. The only thing she wanted to test for had already been tested for in that genetics blood workup. She went ahead and consulted with an older guy who I'm guessing had more experience though, just to be certain, and he thought we should have more thorough genetics testing done (apparently we didn't have the most thorough one to start with), along with an MRI to see if they can figure out why Galen developed Autism. He also mentioned that Galen's head is smaller than expected and he's a bit thin.
EDIT: She wants him to have a hearing test done (a proper one), just in case.
The neurologist lady was the 2nd professional to tell us that Flint's perfectly fine. Apparently she could tell that just from the few mins of watching her while evaluating Galen. She kept smiling at us, engaging us, and even reached for the lady's hand when she put it in front of her to shake it (after shaking mine and Mazzu's hands).
Today we had a therapy evaluation from Cole Pediatric Therapy. It's determined that Galen is about on par for physical therapy, so nothing needs working on for that at the moment. He'll be receiving occupational and speech therapy twice a week, Weds and Thurs's for 1 1/2 hours, starting in June. His speech evaluation showed him to be in the 50-60 range when he should be in the 80-100 range. Basically, he's VERY far behind in speech. I wish I had followed my instincts last year, but then he spoke and showed he still knew how, so I didn't. I can't fix that, but I know my instincts are important to follow.
One unfortunately "fun" thing to come...cold turkey on pacifiers. Galen's teeth are getting a little messed up and is causing some issues with his speech. It seems he does have a bit of a tongue tie, but is saying the sounds he wouldn't be able to if it needed fixing according to the speech therapist.
Tomorrow we see the dentist for both kids. Galen's 6 months behind and has only seen them twice. Flint's 2 months behind and still has no teeth and hasn't seen them before. Expecting it to be fun.
Sunday, May 3, 2015
Possible Breakthrough
Only Autistic kids' parent's will understand this. Galen STOLE 3 pieces of pizza I cooked tonight (that I was trying to eat one at a time). Not only did he steal them off my plate, but he actually ATE the pizza! Well 2 1/2 pieces or so, but still! Such a WIN! He still wouldn't eat it until he threw it on the floor, but success!
Yesterday he stole cereal out of my bowl (one he doesn't ever eat, not the usual cheerios) and ate it. Then later stole 2 pieces of toast off of Mazzu's plate. These all had to be thrown on the floor first, but he's eating other stuff again! I hope it continues.
This may have something to do with this: the past 2 or 3 days, he's only had 1 Boost Chocolate Milk instead of 2 a day. We usually give him 2 a day to make up for his lack of eating and 3 on days he refuses to eat at all. The pediatrician had said that too many in a day would keep him from eating because he'd be full. I'm thinking 2 a day might have been making him full these days. Alternatively, maybe it's a breakthrough again. Like last month when he was eating meat like crazy but then quit again.
I haven't been around much of the last week at all, due to Galen injuring my eye. Instead, Mazzu has really stepped up. Unfortunately, the call I was waiting on from the therapy referral going through FINALLY happened while I was out of commission. So now I have to call them back tomorrow. Hopefully a few days won't make that big of a deal. I couldn't see well enough to write anything they said or read anything to them they might need, so I had to wait either way.
Yesterday he stole cereal out of my bowl (one he doesn't ever eat, not the usual cheerios) and ate it. Then later stole 2 pieces of toast off of Mazzu's plate. These all had to be thrown on the floor first, but he's eating other stuff again! I hope it continues.
This may have something to do with this: the past 2 or 3 days, he's only had 1 Boost Chocolate Milk instead of 2 a day. We usually give him 2 a day to make up for his lack of eating and 3 on days he refuses to eat at all. The pediatrician had said that too many in a day would keep him from eating because he'd be full. I'm thinking 2 a day might have been making him full these days. Alternatively, maybe it's a breakthrough again. Like last month when he was eating meat like crazy but then quit again.
I haven't been around much of the last week at all, due to Galen injuring my eye. Instead, Mazzu has really stepped up. Unfortunately, the call I was waiting on from the therapy referral going through FINALLY happened while I was out of commission. So now I have to call them back tomorrow. Hopefully a few days won't make that big of a deal. I couldn't see well enough to write anything they said or read anything to them they might need, so I had to wait either way.
Monday, April 27, 2015
Day to Day Struggles
Yesterday Galen dragged me outside. We were outside for around an hour before he started to run into the street. He was doing a good job listening and staying safe.
Today, we went outside again. He managed another hour or so (guesstimate) and Galen did really well again. He only ran into the street once.
This week Galen's had 2 pull up poopy explosions, requiring us to have to shower him. I was trying to get him re-accustomed to the bathroom, so he wouldn't scream his head off. It was starting to work, but then he had another explosion today (the second one), and that made it a lot worse. :( We also showered Flint (in the hopes that maybe Galen would associate that he wasn't the only one forced to have one) and she was screaming too. I wish I could fix their worries.
I'm really hoping to get Galen and Flint balance bikes. I think it'd help Galen and Flint would plain love one. I tried to get Galen to play on his push trike thing he got for his birthday but he wouldn't, so I put Flint on it. Oh how she loved it! Didn't even move her since she can't balance herself completely yet, but she loved it.
It made me feel happier. Today had been a pretty big downer. I'd had no success with anything. The SSI appointment was the only thing that even worked, but it's not until the end of June. That was the earliest appointment available. We couldn't get into the therapy place until they get a referral from us. We're still waiting on a referral for so many other things. But, eventually it will start to help. I'm sure of it.
Someone on FB suggested this website to me and it looks really cool (for whenever we have money again): funandfunction.
Today, we went outside again. He managed another hour or so (guesstimate) and Galen did really well again. He only ran into the street once.
This week Galen's had 2 pull up poopy explosions, requiring us to have to shower him. I was trying to get him re-accustomed to the bathroom, so he wouldn't scream his head off. It was starting to work, but then he had another explosion today (the second one), and that made it a lot worse. :( We also showered Flint (in the hopes that maybe Galen would associate that he wasn't the only one forced to have one) and she was screaming too. I wish I could fix their worries.
I'm really hoping to get Galen and Flint balance bikes. I think it'd help Galen and Flint would plain love one. I tried to get Galen to play on his push trike thing he got for his birthday but he wouldn't, so I put Flint on it. Oh how she loved it! Didn't even move her since she can't balance herself completely yet, but she loved it.
It made me feel happier. Today had been a pretty big downer. I'd had no success with anything. The SSI appointment was the only thing that even worked, but it's not until the end of June. That was the earliest appointment available. We couldn't get into the therapy place until they get a referral from us. We're still waiting on a referral for so many other things. But, eventually it will start to help. I'm sure of it.
Someone on FB suggested this website to me and it looks really cool (for whenever we have money again): funandfunction.
Friday, April 24, 2015
Somewhat emotionally exhausted
The kids have done me in the past couple days. I really just broke down last night. Flint wouldn't quit screaming at me, so I decided to try to take a bath with Galen. I figured if it had all his toys and nothing unusual in it, then maybe he'd take one with me again like he used to. Well, of course not. Instead, he screamed and I couldn't even get him fully wet (just the lower half of him) before he got out of the tub himself and ran off screaming. He wouldn't even play with any of the toys with me. He didn't want to come back in the bathroom even.
So I laid there crying. While Galen and Flint were screaming. Mazzu was watching them, so they were safe. I started to get out of the tub when Mazzu was trying to bring Galen in the bathroom to see me (to see if he'd calm down if he saw mommy), but he screamed and wouldn't let daddy bring him in.
So as I was about to come out of the bathroom, I heard Galen say "I want my mama" (that's the longest sentence I've heard in 8 months). I came to get him, he climbed off Mazzu, then screamed and crawled back on Mazzu (wouldn't let me even touch him). He wanted a pacifier, so I handed him the one that I cut the tip off of last night (in an effort to see if the "no tip means less satisfying sucking" theories other mom's have would work on him). He cried still, so I was handing him a real one, right as he finally passed out on Mazzu. Mazzu brought him into the room with me a few mins later and he slept all night, finding only one pacifier in the bed once and then in the morning.
Flint continued to scream for awhile once she was brought to bed too, but they eventually slept. I cried.
I can't even take care of my children's hygiene issues. Neither kids enjoy baths anymore. Galen's teeth are getting bad from the pacifiers and he refuses to allow me to brush his teeth anymore. So, I'm emotionally worn out right now.
So I laid there crying. While Galen and Flint were screaming. Mazzu was watching them, so they were safe. I started to get out of the tub when Mazzu was trying to bring Galen in the bathroom to see me (to see if he'd calm down if he saw mommy), but he screamed and wouldn't let daddy bring him in.
So as I was about to come out of the bathroom, I heard Galen say "I want my mama" (that's the longest sentence I've heard in 8 months). I came to get him, he climbed off Mazzu, then screamed and crawled back on Mazzu (wouldn't let me even touch him). He wanted a pacifier, so I handed him the one that I cut the tip off of last night (in an effort to see if the "no tip means less satisfying sucking" theories other mom's have would work on him). He cried still, so I was handing him a real one, right as he finally passed out on Mazzu. Mazzu brought him into the room with me a few mins later and he slept all night, finding only one pacifier in the bed once and then in the morning.
Flint continued to scream for awhile once she was brought to bed too, but they eventually slept. I cried.
I can't even take care of my children's hygiene issues. Neither kids enjoy baths anymore. Galen's teeth are getting bad from the pacifiers and he refuses to allow me to brush his teeth anymore. So, I'm emotionally worn out right now.
Thursday, April 23, 2015
Short update
Yesterday we got a call about a neurologist appt for Galen. We were referred by the developmental pediatrician apparently. So that's in May.
Today we had an unexpected visit to the regular pediatrician. She actually just wanted to check in (the developmental pediatrician had called her yesterday). She got to witness Galen having a bit of a melt down. It was unexpected since he'd been in a good mood, but HATES to be weighed or having his height checked, so then he was very upset.
Flint's doing great as always. Galen's doing ok. She recommended we get his medicaid changed to the Texas Children's plan the rest of us are on (as it will cover more stuff for him). She's sending in a referral to ECI for both Galen and Flint (since they'll be here evaluating Galen anyway, they can also evaluate Flint just in case). She signed the handicap placard paperwork for Galen as well.
He needs to lose the pacifier since it's messing his teeth up now :/ This is going to be a HUGE deal, since he sleeps with them and it's one of the only things that calms down his melt downs. Not sure how to go about this.
Oh and since we got home, he even (seemingly) listened to "Galen no!" outside. He followed me out as I put some trash in the trash can and had stopped following me (which I didn't immediately realize). I quickly looked for him and he was a couple inches from the street on the driveway and when I said "Galen no!" he turned slightly in a different direction. I picked him up and brought him back in with me.
Today we had an unexpected visit to the regular pediatrician. She actually just wanted to check in (the developmental pediatrician had called her yesterday). She got to witness Galen having a bit of a melt down. It was unexpected since he'd been in a good mood, but HATES to be weighed or having his height checked, so then he was very upset.
Flint's doing great as always. Galen's doing ok. She recommended we get his medicaid changed to the Texas Children's plan the rest of us are on (as it will cover more stuff for him). She's sending in a referral to ECI for both Galen and Flint (since they'll be here evaluating Galen anyway, they can also evaluate Flint just in case). She signed the handicap placard paperwork for Galen as well.
He needs to lose the pacifier since it's messing his teeth up now :/ This is going to be a HUGE deal, since he sleeps with them and it's one of the only things that calms down his melt downs. Not sure how to go about this.
Oh and since we got home, he even (seemingly) listened to "Galen no!" outside. He followed me out as I put some trash in the trash can and had stopped following me (which I didn't immediately realize). I quickly looked for him and he was a couple inches from the street on the driveway and when I said "Galen no!" he turned slightly in a different direction. I picked him up and brought him back in with me.
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).
Saturday, April 18, 2015
Wish I could understand some things that bother Galen
I really wish I understood why Galen stopped liking baths. He hated them from birth and started to like them when I was pregnant with Flint. We got a few great pictures of Galen, Flint, and I in the tub together and then he reverted to hating baths.
Tonight I tried again, but added milk bath (for me) and it bubbled. I wasn't expecting bubbles, but I usually just wash them away quickly, but this was a lot of bubbles. Galen's so very afraid of bubbles. I really don't understand why. It makes me sad cause I love bubbles. Flint didn't enjoy the bath either (but I think that had to do with such a difference in temperature in the water and out of it).
Tonight I gave Galen a few m&m's (one of his favorite snacks) and he sorted them by color before eating them. It was sooo adorable. I took pics.
The past few days, all Galen will eat is cheerios and cheese sticks. He ate some Spanish rice once too, but then wouldn't again. He used to eat a few more things like graham crackers, peanuts, mac and cheese, and would even eat meat a few weeks ago. I really can't figure out why sometimes he'll eat something and other times he won't. There seems to be no rhyme or reason to what he'll eat and when. I know he's healthy and getting enough nutrients from his Boost Chocolate Milk for kids. He's been checked out routinely and is due for a check up in June, but I'd feel better if he'd eat more consistently and better.
The first thing I want to work on with Galen is his speaking. He's clearly able to say certain words and clearly seems to know more than that. He's been trying to say thank you and welcome again (he used to say those around 14 months old and then stopped). If I could get his speech better, then I think we could figure more stuff out just by him communicating better.
Then I'd like to work on eating on plates and in bowls (like he used to!). He really only eats off the floor these days.
I'd also like to work on his eating habits, but that's pretty low on the list compared to other things he needs help with, and I suspect that's actually stuff that will all be worked on together in different therapies.
Mazzu (hubby) will be reading all the info they gave us so we can determine which therapies we'd both like to try on him. I could just choose some, but it needs to be a family effort.
Tonight I tried again, but added milk bath (for me) and it bubbled. I wasn't expecting bubbles, but I usually just wash them away quickly, but this was a lot of bubbles. Galen's so very afraid of bubbles. I really don't understand why. It makes me sad cause I love bubbles. Flint didn't enjoy the bath either (but I think that had to do with such a difference in temperature in the water and out of it).
Tonight I gave Galen a few m&m's (one of his favorite snacks) and he sorted them by color before eating them. It was sooo adorable. I took pics.
The past few days, all Galen will eat is cheerios and cheese sticks. He ate some Spanish rice once too, but then wouldn't again. He used to eat a few more things like graham crackers, peanuts, mac and cheese, and would even eat meat a few weeks ago. I really can't figure out why sometimes he'll eat something and other times he won't. There seems to be no rhyme or reason to what he'll eat and when. I know he's healthy and getting enough nutrients from his Boost Chocolate Milk for kids. He's been checked out routinely and is due for a check up in June, but I'd feel better if he'd eat more consistently and better.
The first thing I want to work on with Galen is his speaking. He's clearly able to say certain words and clearly seems to know more than that. He's been trying to say thank you and welcome again (he used to say those around 14 months old and then stopped). If I could get his speech better, then I think we could figure more stuff out just by him communicating better.
Then I'd like to work on eating on plates and in bowls (like he used to!). He really only eats off the floor these days.
I'd also like to work on his eating habits, but that's pretty low on the list compared to other things he needs help with, and I suspect that's actually stuff that will all be worked on together in different therapies.
Mazzu (hubby) will be reading all the info they gave us so we can determine which therapies we'd both like to try on him. I could just choose some, but it needs to be a family effort.
Friday, April 17, 2015
Floortime: A Therapy for Autism
There are a few versions of therapies that I'd like to try for Galen.
Floortime sounds just like it's named. You literally sit on the floor and play with your child at their own level. (https://www.autismspeaks.org/what-autism/treatment/floortime)
This is what we did when we got home after his diagnosis on Mon (though, I didn't realize it was an actual type of therapy then). It hurt so much to get up off the floor that we ordered a thick yoga mat. This has SIGNIFICANTLY helped me with getting up and down off the floor.
Today, I was playing on the floor with Galen and asked him if he liked me on the floor playing with him and he said "Yeah". We played for a long time, probably at least 2 hours (not the entire time, since he ran off and came back, etc), but a really nice long time. He spoke a little and just enjoyed playing with us. We bought some lettered blocks after he experienced them during testing and those are some of his favorite toys right now (plus the stacking cups from Playskool). We played with the stacking cups for a long time. He's really good at them, even though he wouldn't do them at all during testing. I showed him how to stack them upside down too. Then we also played with the blocks. He and I sorted them by colors, then later I found "1 2 3 4" and touched them saying what numbers they were and then he took my finger over and over again having me repeat the numbers while touching the blocks. And he even added 2 other blocks (both orange C's) which I also said when he put my finger on them.
Our replacement Baby Einstein turtle toy arrived today and is already being played with by both Flint and Galen. The broken one (the orange harp wouldn't light up) was played with a lot today too. Galen stared at it for mins today trying to figure out why the one light didn't light up no matter what button he pressed (that's what it appeared to me anyway).
For all the pain and difficulties we have sometimes (it is SOOO frustrating to not understand what he wants or needs!!), he's such a good natured child so much more often. But his melt downs sure aren't fun.
Floortime sounds just like it's named. You literally sit on the floor and play with your child at their own level. (https://www.autismspeaks.org/what-autism/treatment/floortime)
This is what we did when we got home after his diagnosis on Mon (though, I didn't realize it was an actual type of therapy then). It hurt so much to get up off the floor that we ordered a thick yoga mat. This has SIGNIFICANTLY helped me with getting up and down off the floor.
Today, I was playing on the floor with Galen and asked him if he liked me on the floor playing with him and he said "Yeah". We played for a long time, probably at least 2 hours (not the entire time, since he ran off and came back, etc), but a really nice long time. He spoke a little and just enjoyed playing with us. We bought some lettered blocks after he experienced them during testing and those are some of his favorite toys right now (plus the stacking cups from Playskool). We played with the stacking cups for a long time. He's really good at them, even though he wouldn't do them at all during testing. I showed him how to stack them upside down too. Then we also played with the blocks. He and I sorted them by colors, then later I found "1 2 3 4" and touched them saying what numbers they were and then he took my finger over and over again having me repeat the numbers while touching the blocks. And he even added 2 other blocks (both orange C's) which I also said when he put my finger on them.
Our replacement Baby Einstein turtle toy arrived today and is already being played with by both Flint and Galen. The broken one (the orange harp wouldn't light up) was played with a lot today too. Galen stared at it for mins today trying to figure out why the one light didn't light up no matter what button he pressed (that's what it appeared to me anyway).
For all the pain and difficulties we have sometimes (it is SOOO frustrating to not understand what he wants or needs!!), he's such a good natured child so much more often. But his melt downs sure aren't fun.
Overwhelmed
With Galen's recent diagnosis, it's even more impressive and awesome that at 20 1/2 months old, Galen said "Flint Bailey coming soon" twice. She arrived 2 weeks later, named by her big brother.
I'm overwhelmed by the amount of time that these therapies Galen needs will be weekly. I finished the reading last night and am still trying to process it all. I decided we'd start calling on Mon, so that I can have the weekend to fully process and figure out which therapies I think would benefit Galen most. There are so many types.
I'm overwhelmed by the amount of time that these therapies Galen needs will be weekly. I finished the reading last night and am still trying to process it all. I decided we'd start calling on Mon, so that I can have the weekend to fully process and figure out which therapies I think would benefit Galen most. There are so many types.
Thursday, April 16, 2015
Forgot to add to 1st post
I came up with an idea of printing pics of stuff he eats and drinks and getting it laminated Tues night. So Mazzu got them printed and laminated Wednesday. It may have helped some already. When he saw the pic of the chocolate milk, he smiled and semi-smiled at the pic of the cheese sticks. We gave him both and he wanted them. He sounded like he tried to say 'eat' tonight too and then ate a little. I hope it helps him.
Oh and the Dr had a Baby Einstein turtle that Galen wouldn't play with, but Flint played with for 30 mins straight and loved it. We came home and ordered one for her. Galen seems to love it now that we're home. It's defective some, so we're getting it exchanged, but keeping it til that one arrives.
Oh and the Dr had a Baby Einstein turtle that Galen wouldn't play with, but Flint played with for 30 mins straight and loved it. We came home and ordered one for her. Galen seems to love it now that we're home. It's defective some, so we're getting it exchanged, but keeping it til that one arrives.
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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