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.
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.
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 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).
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.
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.
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 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.
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.
