I thought I better post this before both of the kids wake up. Which will probably be any minute now that I've jinxed myself.
Anyhoo. I wanted to get this down before I forget. Yesterday while the behavior analyst was here for Holden's therapy, he was stimming on little plastic pieces to the game "Perfection". He was gathering them and dropping them off the side of his table. Picking them up, dropping them again. Rinse, repeat x 20. So, I got on the floor with him and started "stimming" with him. I would let him drop them ... but in my hands, instead of on the floor. At first, he pushed my hands away. Then, after the 2nd attempt, he let me catch them. He smiled. We did this a few times. I would interrupt him and tickle him, and then let him go back to doing what he was doing. The interruptions didn't seem to anger him at all. He continued to let me join in with him, and after a while, we started working on signs. I would take the plastic pieces and not let him have them until he said "Please" (by signing it). After the 3rd attempt, he was signing "please" with only a verbal prompt.
I did this with him for about an hour nonstop. Yes, the behavior analyst was here, but, apparently, she was only doing "parent training" cause I was the one on the floor, interacting with him. But, that's another story.
Anyway, after she left, the speech therapist came over about 5 minutes later. She commented on how much more interactive he was. How much more verbal he was. And what a better mood he was in. I think by me joining in with him - it really opened the door for him to engage with us. I've heard of the "Son Rise" method, and even have an online friend who runs the program for her son. Yesterday was the first time I've seen it actually work!
Also, yesterday afternoon - I called for Holden to come eat. He didn't respond, so I called him again. I said "it's time to eat, Holden, come to mommy". He stopped what he was doing and came to me. Then, after eating, he sat on the floor and started stimming with a book - turning the pages over and over again. I stood about 20 feet from him and said "Holden, it's time for bath, come see mommy". He didn't respond, so I said it again. The 2nd time, he put the book down, got up, and walked over to me. Took my hand and took me to the stairs. The bath is upstairs. So, this tells me that not only did he respond to me, but that he UNDERSTOOD me. So, I had a few "wow" moments yesterday. It was a good day...
9.06.2007
8.29.2007
made my day
i thought i'd get a post in while i have a minute (cause lord knows i don't have much more than that anymore during the day).
right now, at this very second - holden's jumping on his trampoline. zoe was sitting on it, and he pushed her off, in true "holden" fashion. but, then, she got off and he pulled her hand back. he's trying to get her to get ON the trampoline with him, to jump. he's smiling at her and keeps wanting her to pick him up.
he's actually PLAYING with her. my day is officially "made".
right now, at this very second - holden's jumping on his trampoline. zoe was sitting on it, and he pushed her off, in true "holden" fashion. but, then, she got off and he pulled her hand back. he's trying to get her to get ON the trampoline with him, to jump. he's smiling at her and keeps wanting her to pick him up.
he's actually PLAYING with her. my day is officially "made".
8.22.2007
"wonder" drug & new therapists
Holden went for his bloodwork yesterday at the DAN! doctor's office. I had gotten a prescription for EMLA cream prior to his appointment. I didn't go to his appointment, seeing as I'm 10 day post partum, and Zoe started school the day before and I needed to stay home and make sure she got to school.
The EMLA cream apparently works well. Dietrich and my mother-in-law both said he didn't flintch one bit while being poked and having blood drawn. It wasn't until they began to administer the Glutathione that he had a mild freak-out session. And, I honestly think it was because the Glutathione was so thick, that it may have burned going into the vein. When I had Jackson, they gave me a pain med in my IV and had to give it slowly because it was so "hard" on the veins. It burned like hell. So, I'm sure he also felt the same thing, since the nurse said the Glutathione is extremely thick and has to be given very slowly.
So, Glutathione is this "wonder" drug. It's not a "drug" really. It's an amino acid. Our bodies naturally produce it, so it can't be classified as a vitamin. It's the most important agent our bodies produce in order to naturally detox our systems. Holden's Glutathione levels were only 1/2 of what would be considered "normal" range. His body doesn't naturally produce it right now. We opted to have the IV push of Glutathione to see if it made a difference. It did. Last night, Holden made more consonant-vowel sounds than he ever has. He said "wow" yesterday on the way home from the doctor. He was happy. His energy level was increased and he laughed and smiled and made good eye contact. The nurse says there are ways to administer Glutathione daily. It doesn't work orally - it should be given through a cream form, or an aerosol (breathing treatments). We have a followup appointment on September 4th and I'm going to ask for some type of daily dose.
We fired Holden's behavior analyst. She called in sick ALL. THE. TIME. I liked her, but, she was just not dependable. Not consistent. I called and asked for a new thearpist. She came out today. Her name is Barbara and I like her. I think she's definitely more professional. She asked a lot of questions. When I told her that I want to learn how to do what I need to do at home for Holden when she's not there, she said "that's what I'm here for". She's more positive. Even going as far as explaining to me that many of his behaviors I told her about are "normal", but just exaggerated. And, that teaching him in a different way is what is going to help him most. Did I mention I like her? Cause I do. So, she'll be at the house from 9:30-11am every Monday & Wednesday. Here's looking forward to Monday......
The EMLA cream apparently works well. Dietrich and my mother-in-law both said he didn't flintch one bit while being poked and having blood drawn. It wasn't until they began to administer the Glutathione that he had a mild freak-out session. And, I honestly think it was because the Glutathione was so thick, that it may have burned going into the vein. When I had Jackson, they gave me a pain med in my IV and had to give it slowly because it was so "hard" on the veins. It burned like hell. So, I'm sure he also felt the same thing, since the nurse said the Glutathione is extremely thick and has to be given very slowly.
So, Glutathione is this "wonder" drug. It's not a "drug" really. It's an amino acid. Our bodies naturally produce it, so it can't be classified as a vitamin. It's the most important agent our bodies produce in order to naturally detox our systems. Holden's Glutathione levels were only 1/2 of what would be considered "normal" range. His body doesn't naturally produce it right now. We opted to have the IV push of Glutathione to see if it made a difference. It did. Last night, Holden made more consonant-vowel sounds than he ever has. He said "wow" yesterday on the way home from the doctor. He was happy. His energy level was increased and he laughed and smiled and made good eye contact. The nurse says there are ways to administer Glutathione daily. It doesn't work orally - it should be given through a cream form, or an aerosol (breathing treatments). We have a followup appointment on September 4th and I'm going to ask for some type of daily dose.
We fired Holden's behavior analyst. She called in sick ALL. THE. TIME. I liked her, but, she was just not dependable. Not consistent. I called and asked for a new thearpist. She came out today. Her name is Barbara and I like her. I think she's definitely more professional. She asked a lot of questions. When I told her that I want to learn how to do what I need to do at home for Holden when she's not there, she said "that's what I'm here for". She's more positive. Even going as far as explaining to me that many of his behaviors I told her about are "normal", but just exaggerated. And, that teaching him in a different way is what is going to help him most. Did I mention I like her? Cause I do. So, she'll be at the house from 9:30-11am every Monday & Wednesday. Here's looking forward to Monday......
8.20.2007
He's here!
Jackson Collier Block. Born on August 10th @ 12:53pm. Weighing in at 8 lbs., 15 ozs. He's wonderful!
8.06.2007
holy moly, we're busy!
Zoe turned 8 yesterday. 8. I can't believe it. She's just the best kid in the world...
Holden imitated me 3 times in a row on Saturday evening. He was in his highchair and I asked him to "do this" and he did 3 things I asked him to - 1.) tapped his spoon on his highchair like I did, 2.) put his hands in the air, and 3.) clapped his hands. He did them all on either the 1st or 2nd request. His eye contact has been pretty good lately, too. I don't know if it's the L-Carnosine or not. He's up 600mg. now and I'm going to add the other 200mg. in the next 2 days. Research shows we could see improvements within 1-8 weeks of being on it. He's been on for 1 week and hasn't reached the full recommended dose yet. I'm hoping for great things to come our way soon.
2 more days until the amnio on Wednesday. Then the c-section on Friday. I'm SO ready. I need a martini!
7.31.2007
37 weeks, my 7 yr old is turning 8, and starting more supplements
There's so much going on for us, I can't keep track. But I'll try.
-I'm 37 weeks pregnant today. 8 days until the amnio, and 10 days until the scheduled c-section. Today, I had a regular appt with the OB (waste of time, as I saw a nurse who asked me if I had any questions and when I said "no", said "okay, see you later"). Then I had a NST at the hospital and they kept me hooked up for 1.5 hours because this little guy's heartrate was in the 180's. Excited, I suppose. Eventually, they let me go, thankfully. So, now, I sit and wait 8 days until the next step in this process. I cannot WAIT to get this pregnancy over with. I'm gonna have a HUGE martini!
-Zoe will be 8 on Sunday. How is that possible? I mean, just yesterday, she was born ... 8lbs. 9ozs. Now, she'll be 8 and she's starting the 3rd grade in a few weeks. I just. I don't know where it goes. The time. She's a typical 8 year old. She's turned into quite the young lady, and the best big sister in the world. She's so patient with Holden and even though she's aware there's a chance (although, be it small) that Jackson will also have "problems", she's ready to accept him and help and love him just as she does Holden. She has such a big heart, and is one of the most loving kids I know. She's respectful and parents tell me all the time what a good kid she is. We're so proud of her.
-Now that Holden's rash has disappeared and his 'negative' behaviors have subsided, we're starting the epsom salt rubs again. Along with starting the L-Carnosine. We're holding off on the Alpha Ketoglutaric Acid for now - until we check his ammonia levels at the next blood draw - scheduled for August 21st. I'm starting with a very diluted mixture of the salt rubs, hoping not to irritate his skin. And, we start off with 2 caps of L-Carnosine daily, working up to 4. I'm hoping that he has good results with these.
My friend came over for dinner this past Saturday. She's a behavior analyst and has been doing this type of work for 11 years. She told me that he's definitely improved since the last time she saw him (about 3-4 weeks ago). Said he's more engaged, and more aware of things going on. She said he's moving in the right direction - and THAT made me happy. It's hard for me sometimes to see the progress - I'm so closely tied to him. I'm never away from him, and so, people who may not see him all the time - see the changes before I do. Or at least, recognize them as progress.
We're busy over here, but i keep telling myself that August is going to be a good month!!!!
-I'm 37 weeks pregnant today. 8 days until the amnio, and 10 days until the scheduled c-section. Today, I had a regular appt with the OB (waste of time, as I saw a nurse who asked me if I had any questions and when I said "no", said "okay, see you later"). Then I had a NST at the hospital and they kept me hooked up for 1.5 hours because this little guy's heartrate was in the 180's. Excited, I suppose. Eventually, they let me go, thankfully. So, now, I sit and wait 8 days until the next step in this process. I cannot WAIT to get this pregnancy over with. I'm gonna have a HUGE martini!
-Zoe will be 8 on Sunday. How is that possible? I mean, just yesterday, she was born ... 8lbs. 9ozs. Now, she'll be 8 and she's starting the 3rd grade in a few weeks. I just. I don't know where it goes. The time. She's a typical 8 year old. She's turned into quite the young lady, and the best big sister in the world. She's so patient with Holden and even though she's aware there's a chance (although, be it small) that Jackson will also have "problems", she's ready to accept him and help and love him just as she does Holden. She has such a big heart, and is one of the most loving kids I know. She's respectful and parents tell me all the time what a good kid she is. We're so proud of her.
-Now that Holden's rash has disappeared and his 'negative' behaviors have subsided, we're starting the epsom salt rubs again. Along with starting the L-Carnosine. We're holding off on the Alpha Ketoglutaric Acid for now - until we check his ammonia levels at the next blood draw - scheduled for August 21st. I'm starting with a very diluted mixture of the salt rubs, hoping not to irritate his skin. And, we start off with 2 caps of L-Carnosine daily, working up to 4. I'm hoping that he has good results with these.
My friend came over for dinner this past Saturday. She's a behavior analyst and has been doing this type of work for 11 years. She told me that he's definitely improved since the last time she saw him (about 3-4 weeks ago). Said he's more engaged, and more aware of things going on. She said he's moving in the right direction - and THAT made me happy. It's hard for me sometimes to see the progress - I'm so closely tied to him. I'm never away from him, and so, people who may not see him all the time - see the changes before I do. Or at least, recognize them as progress.
We're busy over here, but i keep telling myself that August is going to be a good month!!!!
7.29.2007
sunday
We decided this weekend to cut Holden's hair ourselves, so we didn't have to deal with the "freak out" sessions at the hair cutting place. I love it, but it makes him look more like a little boy, than my baby.
He's also improving since my last post. No more rough, red rash, and no more "rocking" or strange behaviors. Thankfully. I honestly think he was going through a detox stage, in addition to having a bad reaction to being taken off the anti-fungal meds. Whatever it was, it seems to be over and I'm just thankful.
7.25.2007
stepping back
Holden's developed some 'strange' symptoms / behaviors over the past week. So I spoke to Dr. Berger via phone last night and we've decided to take a step back. He said when negative behaviors develop, he likes to "undo" the last step taken to see if thats causing it. We're taking Holden off of the salt rubs, and off of the alpha ketoglutaric acid - for 7-10 days to see if there's improvement. I also ran out of his anti-fungal medication and failed to refill it fast enough. He's been off of the diflucan for 4 days, which could have allowed yeast to grow back in his intestines. We're to start that again, immediately.
His symptoms/behaviors over the past week (in order):
-rough, red skin rash on his arms, upper thighs, and stomach
-vomitted (once - not sure if this was even related)
-constipation
-after constipation; black, sticky poop with "specks"
-acting frightened at a lot of things - TV, when waking up in the middle of sleep, etc.
-new stimming behaviors, including rocking back and forth (something he's never done)
Hopefully the symptoms will improve and we'll slowly add things back in to see what may have caused the negative reaction.
His symptoms/behaviors over the past week (in order):
-rough, red skin rash on his arms, upper thighs, and stomach
-vomitted (once - not sure if this was even related)
-constipation
-after constipation; black, sticky poop with "specks"
-acting frightened at a lot of things - TV, when waking up in the middle of sleep, etc.
-new stimming behaviors, including rocking back and forth (something he's never done)
Hopefully the symptoms will improve and we'll slowly add things back in to see what may have caused the negative reaction.
7.23.2007
Pains
I've been doing the epsom salt rubs on Holden for about a week now. Today was the first time I did a morning rub, and it wasn't so bad. He doesn't like the way it feels when it starts to dry though, so, once it's dry, I wipe it off with a wet paper towel. It seems to make him a bit lethargic though. Don't know if that's the epsom salts, or if he's just been in one of those moods.
I emailed Dr. David's nurse today because he's developed a red, rough rash on his arms, stomach and legs. Kinda weird because I thought it might be the rubs, but, he gets most of the salt on his back because he can't mess with it, and his back is fine. Sooo. Not sure what that is, but I emailed to find out. He was also a bit red around his eyes, and his cheeks were red, too - this past weekend. He did the same thing when we went through taking the dairy out of his diet. It lasted a few days and then went away. So, maybe it's just his bodies way of detoxing, I don't know.
Anyway. He's into the Wiggles now, so we watch about 10 episodes a day. He loves it. He runs around when they sing and dances. He jumps on his trampoline. I'm okay with it, because it gives me an opportunity to dance around with him and try to get him to imitate some of the gross motor skills they're doing on TV. And, the activity seems to put him in a great mood.
Although, right this instant, he's wanting to be held, so gotta run. Will update more later.
I emailed Dr. David's nurse today because he's developed a red, rough rash on his arms, stomach and legs. Kinda weird because I thought it might be the rubs, but, he gets most of the salt on his back because he can't mess with it, and his back is fine. Sooo. Not sure what that is, but I emailed to find out. He was also a bit red around his eyes, and his cheeks were red, too - this past weekend. He did the same thing when we went through taking the dairy out of his diet. It lasted a few days and then went away. So, maybe it's just his bodies way of detoxing, I don't know.
Anyway. He's into the Wiggles now, so we watch about 10 episodes a day. He loves it. He runs around when they sing and dances. He jumps on his trampoline. I'm okay with it, because it gives me an opportunity to dance around with him and try to get him to imitate some of the gross motor skills they're doing on TV. And, the activity seems to put him in a great mood.
Although, right this instant, he's wanting to be held, so gotta run. Will update more later.
7.15.2007
Dan! Doctor Update
Holden had an appointment with Dr. Berger last Friday. He explained the bloodtest results to us and we've added a few things to his mixture of supplements, vitamins, etc.:
-Alpha Keto Acid - this is to lower his ammonia levels (1 cap / day).
-Epsom Salt Rubs - in addition to the epsom salt baths because his sulfate levels are still too low (twice / day).
-L-Carnisone - Holden has none of this in his system and Dr. Berger explained that studies show it improves symptoms in ASD kids; so this was something he really wanted us to start. We will start 2 caps, 10 days from now, and slowly work up to 4 caps per day.
We have a repeat blood test on August 21st (joy, joy - I HATE having to stick him again) at which time he will also administer an IV dose of glutathione. He's going to start with a low dose (300 mg.) and work up to a higher dose if he shows improvement. Holden's glutathione levels were one of the lowest Dr. Berger has ever seen. He would like to repeat this level just prior to infusing with the IV dose. He said if the levels are truly as low as they show on this recent blood test - then we should see a dramatic improvement with the IV dose next month.
Our next appointment with him will be 2 weeks after the bloodtest and IV glutathione.
We discussed chelation and he explained that it's very important to get the yeast levels down before starting full chelation. If not, it could have the opposite effect. We will continue the diflucan for now and will send in another stool sample test in 2 weeks to see if the yeast has cleared up. If not, we will add at least 2 weeks of diflucan onto the month he's been on it already. This will also help with his high levels of testosterone. Dr. Berger said this could be a long term medication, but he would lower the dose if using only for maintenence.
All in all, it was a good appointment. Hopefully we will continue to see improvement in Holden. I'm hopeful.
-Alpha Keto Acid - this is to lower his ammonia levels (1 cap / day).
-Epsom Salt Rubs - in addition to the epsom salt baths because his sulfate levels are still too low (twice / day).
-L-Carnisone - Holden has none of this in his system and Dr. Berger explained that studies show it improves symptoms in ASD kids; so this was something he really wanted us to start. We will start 2 caps, 10 days from now, and slowly work up to 4 caps per day.
We have a repeat blood test on August 21st (joy, joy - I HATE having to stick him again) at which time he will also administer an IV dose of glutathione. He's going to start with a low dose (300 mg.) and work up to a higher dose if he shows improvement. Holden's glutathione levels were one of the lowest Dr. Berger has ever seen. He would like to repeat this level just prior to infusing with the IV dose. He said if the levels are truly as low as they show on this recent blood test - then we should see a dramatic improvement with the IV dose next month.
Our next appointment with him will be 2 weeks after the bloodtest and IV glutathione.
We discussed chelation and he explained that it's very important to get the yeast levels down before starting full chelation. If not, it could have the opposite effect. We will continue the diflucan for now and will send in another stool sample test in 2 weeks to see if the yeast has cleared up. If not, we will add at least 2 weeks of diflucan onto the month he's been on it already. This will also help with his high levels of testosterone. Dr. Berger said this could be a long term medication, but he would lower the dose if using only for maintenence.
All in all, it was a good appointment. Hopefully we will continue to see improvement in Holden. I'm hopeful.
7.12.2007
dear baby # 3,
kid, seriously, you're killing me. i'm tired, oh so tired. all.the.time. i've taken to raspberry mocha frappachinos from starbucks to get me through each day. i can't sleep at night because you're so damn heavy now that it hurts my back, hips, butt, and every organ on the inside - especially my bladder. my poor bladder - i was up 4 times last night, and lost count today of how many times i've gone to the bathroom.
you're moving like CRAZY. yesterday, i actually had to get up and walk around because i could feel your feet in my ribs. you settled down, but, started back up shortly after i sat down.
you have a schedule now. pretty quiet in the evenings - from about 4-8. then, around 8, 9pm, you're up and going strong. rolling now, not just kicking.
i'm having twice weekly NST's now, and this morning, you decided NOT to cooperate, so i had to lay on my side (uncomfortable) so they could get some reaction out of you. i reassured the nurse that you are indeed moving around in there, but your heart rate didn't elevate like they wanted. so, i had to stay connected for an extra 10-20 minutes, thankyouverymuch.
even with all of that, we cannot wait to see you and meet you. your sister is going nuts. she wants to rock you in the rocking chair. your brother is rubbing my belly and actually saying "baby" - a fete in itself. he's constantly putting his head on my belly, and has discovered that mama's boobs are now incredibly huge.
so, hurry! well, don't hurry, because we're not entirely ready. but, august 10th can't come fast enough.
love,
mama
you're moving like CRAZY. yesterday, i actually had to get up and walk around because i could feel your feet in my ribs. you settled down, but, started back up shortly after i sat down.
you have a schedule now. pretty quiet in the evenings - from about 4-8. then, around 8, 9pm, you're up and going strong. rolling now, not just kicking.
i'm having twice weekly NST's now, and this morning, you decided NOT to cooperate, so i had to lay on my side (uncomfortable) so they could get some reaction out of you. i reassured the nurse that you are indeed moving around in there, but your heart rate didn't elevate like they wanted. so, i had to stay connected for an extra 10-20 minutes, thankyouverymuch.
even with all of that, we cannot wait to see you and meet you. your sister is going nuts. she wants to rock you in the rocking chair. your brother is rubbing my belly and actually saying "baby" - a fete in itself. he's constantly putting his head on my belly, and has discovered that mama's boobs are now incredibly huge.
so, hurry! well, don't hurry, because we're not entirely ready. but, august 10th can't come fast enough.
love,
mama
7.05.2007
blood test results
So, I thought I had already posted about this, but apparently my pregnancy mind is out of wack - surprise, surprise.
We got Holden's blood test results back end of last week. We haven't spoken to the doctor yet about them, his appointment is Friday, the 13th. So, we'll really find out what they all mean at that time.
But, from what I can gather and what Dr. Google has said - his results weren't good. Which, in reality, this is the one time that I'm all for his test results being "bad". Why? Because it means that there's a reason for things. Now I have proof that his natural ability to detox is just not there. Which means that he's full of toxins. Which means that we can actually DO something about it, and hope that it increases his ability to learn and focus and progress.
His ammonia levels are high. Dr. Berger thought they might be. He said this would explain the "spaciness", and cloudiness he displays. For his metabolic panel, he had low levels of 2 out of 3 things his body needs to detox. He's low in sulfate and glutathione. His regular blood tests showed low levels of a few things, and increased levels of others. When I google those things and autism - he's pretty much text book for things he's "off" on. He does have extremely high levels of zinc, which is strange. Normally, kids on the spectrum have a zinc deficiency. So, I'm not sure what that's about. I'm sure we'll get more clarification next Friday at his appointment. And then we'll learn what the next step is in his treatment plan.
In other news, 4th of July was pretty much rained out for us. No fireworks, except for the one's the neighbors set off outside. Zoe was happy with that, though, so that was good. I went for my weekly NST this morning. Everything's good with the baby so far. On Tuesday, I'll be 34 weeks and have to have NST's twice a week, which is hard with 2 other little one's and a husband that needs to go to work everyday. But, somehow, we'll make it work. We always do.
We got Holden's blood test results back end of last week. We haven't spoken to the doctor yet about them, his appointment is Friday, the 13th. So, we'll really find out what they all mean at that time.
But, from what I can gather and what Dr. Google has said - his results weren't good. Which, in reality, this is the one time that I'm all for his test results being "bad". Why? Because it means that there's a reason for things. Now I have proof that his natural ability to detox is just not there. Which means that he's full of toxins. Which means that we can actually DO something about it, and hope that it increases his ability to learn and focus and progress.
His ammonia levels are high. Dr. Berger thought they might be. He said this would explain the "spaciness", and cloudiness he displays. For his metabolic panel, he had low levels of 2 out of 3 things his body needs to detox. He's low in sulfate and glutathione. His regular blood tests showed low levels of a few things, and increased levels of others. When I google those things and autism - he's pretty much text book for things he's "off" on. He does have extremely high levels of zinc, which is strange. Normally, kids on the spectrum have a zinc deficiency. So, I'm not sure what that's about. I'm sure we'll get more clarification next Friday at his appointment. And then we'll learn what the next step is in his treatment plan.
In other news, 4th of July was pretty much rained out for us. No fireworks, except for the one's the neighbors set off outside. Zoe was happy with that, though, so that was good. I went for my weekly NST this morning. Everything's good with the baby so far. On Tuesday, I'll be 34 weeks and have to have NST's twice a week, which is hard with 2 other little one's and a husband that needs to go to work everyday. But, somehow, we'll make it work. We always do.
6.25.2007
die-off
Well, we're on day 6 (or is it 7?) of the diflucan. It hasn't been TOO bad. Holden is definitely displaying some behaviors we haven't seen before. Strange things. He's taken to "scooting" himself across the tile floor. Not all the time, but enough that I've noticed. He's also had a lot of stimming lately with paper towels. The kid cannot see a paper towel without crying for it. He rips it up in little pieces and rips up the little pieces into even smaller pieces. We took away a paper towel yesterday and he freaked. He doesnt normally "tantrum", aside from the typical 2 yr. stuff. But, taking the paper towel away yesterday ... hooo boy did that cause a bigtime tantrum. He started hitting his chest like king kong, and walked over to me and started hitting me on the thigh. Hard. And he's so NOT an aggressive kid. So it was a shock for me. But, then I remembered that Dr. Berger told us that he may do that, he may become overly aggressive, and display behaviors we've never seen before. So, that's my saving grace. It's not normal for him, so hopefully it's only being caused from the die-off effect of the yeast releasing toxins into his blood stream.
He's also doing some not-so-bad things. He's more verbal. No words really, but attempting to communicate. He's definitely saying "dada", "bibi", "mama" now. I thought he was saying these things before, but now, it's a definite. And MOST of the time, he's using them in the correct context. He's also doing well with the signing. If he wants something, he almost immediately signs "please". Or, "drink". He also seems to be more here, playing with his toys and wanting to interact with us. Following his sister around enough that she had to throw him out of her room yesterday. He's also responding a lot more to me when I say "come here", or "stop". That's a good thing.
He found Zoe's perfection game. The one where you put in all the little tiny pieces (shapes) in a certain amount of time. So, he's now learning all of those abnormal shapes and where to put them. He's been working on that a lot this morning. The kid loves shapes.
Totally unrelated - it's hot as hell here. We just went to the park and I couldn't stand more than 30-40 minutes of the heat and humidity. So, so hot. And, I'll be 32 weeks pregnant tomorrow. So much to do in so little time. It's creeping up on me, this August 10th c-section date. I have to call the new pediatrician we're going to be using and pray that she's accepting new patients. I have to draw up the document saying we don't want the new baby receiving the Hep B vaccine at birth. I have to take Zoe school clothes shopping before I'm down and out for a few weeks (her school starts August 21st). And, on top of that, our weekly therapy schedule is now as follows:
Monday - 2-3pm - ABA therapy (home)
Tuesday - 10:30-11am - Speech therapy (home)
Wednesday - 2-3pm - ABA therapy (home)
Thursday - 10:00-10:30am - OT (clinic)
Friday - 11:30 - 12noon - Speech therapy (home) AND 2-3pm - ABA therapy (home)
Oh, and on top of that, I start twice weekly NST's for this pregnancy this week. Starting on Thrusday @ 7am. Fun.
But, we're hanging in there!
He's also doing some not-so-bad things. He's more verbal. No words really, but attempting to communicate. He's definitely saying "dada", "bibi", "mama" now. I thought he was saying these things before, but now, it's a definite. And MOST of the time, he's using them in the correct context. He's also doing well with the signing. If he wants something, he almost immediately signs "please". Or, "drink". He also seems to be more here, playing with his toys and wanting to interact with us. Following his sister around enough that she had to throw him out of her room yesterday. He's also responding a lot more to me when I say "come here", or "stop". That's a good thing.
He found Zoe's perfection game. The one where you put in all the little tiny pieces (shapes) in a certain amount of time. So, he's now learning all of those abnormal shapes and where to put them. He's been working on that a lot this morning. The kid loves shapes.
Totally unrelated - it's hot as hell here. We just went to the park and I couldn't stand more than 30-40 minutes of the heat and humidity. So, so hot. And, I'll be 32 weeks pregnant tomorrow. So much to do in so little time. It's creeping up on me, this August 10th c-section date. I have to call the new pediatrician we're going to be using and pray that she's accepting new patients. I have to draw up the document saying we don't want the new baby receiving the Hep B vaccine at birth. I have to take Zoe school clothes shopping before I'm down and out for a few weeks (her school starts August 21st). And, on top of that, our weekly therapy schedule is now as follows:
Monday - 2-3pm - ABA therapy (home)
Tuesday - 10:30-11am - Speech therapy (home)
Wednesday - 2-3pm - ABA therapy (home)
Thursday - 10:00-10:30am - OT (clinic)
Friday - 11:30 - 12noon - Speech therapy (home) AND 2-3pm - ABA therapy (home)
Oh, and on top of that, I start twice weekly NST's for this pregnancy this week. Starting on Thrusday @ 7am. Fun.
But, we're hanging in there!
6.20.2007
DAN! Doctor Appt - 6/18/07
On Monday, we took Holden back to Tampa to see Dr. Berger. It was his second appointment. He explained Holden's urine and stool sample results. The way he explained things to us is that there are kids he sees on the spectrum who's test results are a "slam dunk". Meaning that the results are "clear" and he knows exactly how to treat them. Then, there are kids who's results are absolutely normal. Holden falls within the 20-30% of kids he sees where the results aren't necessarily BAD; but there are enough abnormalities that require tweaking in order to get his system ready for any kind of heavy metal detox.
Updated treatment plan:
-continue epsom salt baths (night sweats are completely gone now; and this will help continue to replinish his sulfate levels that will help with natural detox).
-continue fish oil daily
-begin 30 day course of diflucan for overgrowth of yeast.
-4-5 days after beginning diflucan, we will start Factor-4 daily to help replace bifidobacter (a "good" bacteria that he's lacking according to his stool sample).
-4-5 days after starting Factor-4, start buffered vitamin C (lacking according to urine results).
Holden also had blood work drawn. They drew 6-7 vials. It was hell, yes it was. They will test for basically everything known to man. Routine stuff - CBC, kidney function, etc. They will also be testing for testosterone levels. Seems that recent studies show that kids on the spectrum have higher levels of testosterone (explains why more boys than girls are on the spectrum in the first place). They will test for zinc levels, copper levels, amonia levels. They will also test for Holden's natural ability to detox his own system.
With these results, we'll have a better idea of what we also need to correct before beginning any type of chelation treatment.
Dr. Berger explained something called the "die-off effect" while on the diflucan. He said that he sees maybe 2-3 kids a year who go through this. It's an extreme reaction to the yeast dying off while on the medication. The yeast will release toxins into the blood stream and cause an adverse reaction. He said that a few things could happen and we may notice them in the next wek or so after starting the diflucan. 1.) we may see him doing things he hasn't done before - new "symptoms" of autism. He may not sleep well. He may be cranky and upset. 2.) we may see him slip into his own shell. Not verbalize at all, and sleep pretty much constantly. or 3.) he may have the adverse reaction mentioned above as the "die-off" effect. He said that if he does have this, he will become VERY aggressive and out of control. If this happens, we're to call his office and they will give us the dosing of liquid charcoal that will help bind the toxins together and will reverse the symptoms within 24 hours.
I'm hoping and praying #3 doesn't happen.
Updated treatment plan:
-continue epsom salt baths (night sweats are completely gone now; and this will help continue to replinish his sulfate levels that will help with natural detox).
-continue fish oil daily
-begin 30 day course of diflucan for overgrowth of yeast.
-4-5 days after beginning diflucan, we will start Factor-4 daily to help replace bifidobacter (a "good" bacteria that he's lacking according to his stool sample).
-4-5 days after starting Factor-4, start buffered vitamin C (lacking according to urine results).
Holden also had blood work drawn. They drew 6-7 vials. It was hell, yes it was. They will test for basically everything known to man. Routine stuff - CBC, kidney function, etc. They will also be testing for testosterone levels. Seems that recent studies show that kids on the spectrum have higher levels of testosterone (explains why more boys than girls are on the spectrum in the first place). They will test for zinc levels, copper levels, amonia levels. They will also test for Holden's natural ability to detox his own system.
With these results, we'll have a better idea of what we also need to correct before beginning any type of chelation treatment.
Dr. Berger explained something called the "die-off effect" while on the diflucan. He said that he sees maybe 2-3 kids a year who go through this. It's an extreme reaction to the yeast dying off while on the medication. The yeast will release toxins into the blood stream and cause an adverse reaction. He said that a few things could happen and we may notice them in the next wek or so after starting the diflucan. 1.) we may see him doing things he hasn't done before - new "symptoms" of autism. He may not sleep well. He may be cranky and upset. 2.) we may see him slip into his own shell. Not verbalize at all, and sleep pretty much constantly. or 3.) he may have the adverse reaction mentioned above as the "die-off" effect. He said that if he does have this, he will become VERY aggressive and out of control. If this happens, we're to call his office and they will give us the dosing of liquid charcoal that will help bind the toxins together and will reverse the symptoms within 24 hours.
I'm hoping and praying #3 doesn't happen.
6.14.2007
more withdrawls? ... and moving
We've made it to day 5 of the FULL gf/cf diet - both dairy and gluten-free. Yesterday, Holden woke up with really red cheeks for some reason. No fever. Just red cheeks and looking exhausted. The best word I can think of to describe him was ... "weepy" looking. When he woke up today, the cheeks were back to normal, but by 2:30 this afternoon - they're red again. Not as red as yesterday, but red. I don't know if this is a symptom of the withdrawls from the dairy and wheat? Who knows. I'm watching to see what happens. And we have an appointment with his doctor on Monday @ 9am.
We're moving tomorrow. I'm so not excited about this. I hate moving, with a passion. I just want to own a home. Really. That's what I really want. But, that's not going to happen, at least not for a few years. We're signing a 12 month lease. And once that's up, we'll probably move. Yet again. And this time, we're thinking about Dallas. Dietrich's twin brother and his wife are there. We went last Thanksgiving and I actually like the area. So, maybe. Either way, I hope we only have 1 or 2 more moves for the rest of our lives. Cause I hate this shit.
Good thing is, Zoe's friend asked her to come stay at the beach with her for a few days. Her friend's family rented a condo in Port Orange / Ponce Inlet. I took her this morning and dropped her off. And yes, I already miss her. She won't be here for the move, so I tried explaining to her that when she comes back, she'll come back to a different house and neighborhood. It will be interesting to see how she responds.
Anyway, back to packing. Ugggg.
We're moving tomorrow. I'm so not excited about this. I hate moving, with a passion. I just want to own a home. Really. That's what I really want. But, that's not going to happen, at least not for a few years. We're signing a 12 month lease. And once that's up, we'll probably move. Yet again. And this time, we're thinking about Dallas. Dietrich's twin brother and his wife are there. We went last Thanksgiving and I actually like the area. So, maybe. Either way, I hope we only have 1 or 2 more moves for the rest of our lives. Cause I hate this shit.
Good thing is, Zoe's friend asked her to come stay at the beach with her for a few days. Her friend's family rented a condo in Port Orange / Ponce Inlet. I took her this morning and dropped her off. And yes, I already miss her. She won't be here for the move, so I tried explaining to her that when she comes back, she'll come back to a different house and neighborhood. It will be interesting to see how she responds.
Anyway, back to packing. Ugggg.
6.12.2007
GF/CF Diet
The doctor recommended we try the GF/CF diet for 3 months. I was hesitant because Holden doesn't have a lot of the "digestive problems" that I hear other kids on the spectrum have. But, after talking to some of the other moms who have children either on the spectrum, or that have fully recovered, I realized that it's not a matter of allergies or just sensitivities. Because of the higher level of toxins in our kids, they're unable to breakdown or digest dairy and wheat products. These leak through their intestines and cause peptides, which turn into opiates and affect their brains. Thus, the reason they're not able to learn as quickly as other kids. And, it can cause the "high" feeling for them.
So, we're trying it. Last Tuesday, I took Holden off of dairy. Cold turkey. Tuesday night, he went to bed at 11pm, and got up at 5am (and many times in between). He took a FOUR hour nap on Wednesday and then went down Wednesday night at 8pm. He was up every hour that night. Whining. I would try and give him his sippy cup (which normally would quiet him back to sleep) with juice and water mixed - didn't want anything to do with this. He would take a sip, throw it across the room, and then cry. We were up at 5am Thursday morning for good. Both nights (Wed & Thurs), he had massive night sweats. The bed was soaked. Thursday, his eye contact was horrible. He wasn't responding to me as much as he normally does. He was in his own little world. I called Dr. Berger's nurse, who called me back on Friday and assured me that this is all par for the course. He was going through withdrawls, and that is actually a GOOD sign because it means that the dairy was affecting him, and affecting him in a negative way. It's like a druggie detoxing off of drugs.
His eye contact improved by Friday and his sleep did, too. He was pretty much back to "normal" and became more vocal. Still no "real" words, but it's still as if he was trying to communicate with us more. Coincidence? Dunno.
I planned on taking him off of the gluten next week - after we move. But, we went to Chamberlains and Whole Foods on Saturday and I decided to go ahead with the gluten-free portion of the diet. They actually have some good stuff! So, today is Tuesday and we're on day 3 of no gluten. Not sleeping well, and the eye contact is back to minimal. The night sweats aren't as bad as with the dairy, but the responding to his name is awful. Yesterday, his ABA therapist mentioned how much different he seemed - in his own little world again. Kind of "out of it".
It's hard. I'm trying to stay positive and I keep telling myself a million times a day that this is just part of it. That his body is trying to regulate itself. Get used to being without it's drugs. His brain is adjusting. Now I understand why parents give up on the diet so quickly - it's hard to watch your child going through this. It's almost as if they seem "worse" and their symptoms definitely seem worse, but I'm told to stick it out because once you get through this part of it - you'll see the improvements.
I'm hoping and praying it happens soon.
So, we're trying it. Last Tuesday, I took Holden off of dairy. Cold turkey. Tuesday night, he went to bed at 11pm, and got up at 5am (and many times in between). He took a FOUR hour nap on Wednesday and then went down Wednesday night at 8pm. He was up every hour that night. Whining. I would try and give him his sippy cup (which normally would quiet him back to sleep) with juice and water mixed - didn't want anything to do with this. He would take a sip, throw it across the room, and then cry. We were up at 5am Thursday morning for good. Both nights (Wed & Thurs), he had massive night sweats. The bed was soaked. Thursday, his eye contact was horrible. He wasn't responding to me as much as he normally does. He was in his own little world. I called Dr. Berger's nurse, who called me back on Friday and assured me that this is all par for the course. He was going through withdrawls, and that is actually a GOOD sign because it means that the dairy was affecting him, and affecting him in a negative way. It's like a druggie detoxing off of drugs.
His eye contact improved by Friday and his sleep did, too. He was pretty much back to "normal" and became more vocal. Still no "real" words, but it's still as if he was trying to communicate with us more. Coincidence? Dunno.
I planned on taking him off of the gluten next week - after we move. But, we went to Chamberlains and Whole Foods on Saturday and I decided to go ahead with the gluten-free portion of the diet. They actually have some good stuff! So, today is Tuesday and we're on day 3 of no gluten. Not sleeping well, and the eye contact is back to minimal. The night sweats aren't as bad as with the dairy, but the responding to his name is awful. Yesterday, his ABA therapist mentioned how much different he seemed - in his own little world again. Kind of "out of it".
It's hard. I'm trying to stay positive and I keep telling myself a million times a day that this is just part of it. That his body is trying to regulate itself. Get used to being without it's drugs. His brain is adjusting. Now I understand why parents give up on the diet so quickly - it's hard to watch your child going through this. It's almost as if they seem "worse" and their symptoms definitely seem worse, but I'm told to stick it out because once you get through this part of it - you'll see the improvements.
I'm hoping and praying it happens soon.
5.30.2007
Biomedical Protocol
We had our appt with Dr. David Berger in Tampa a few weeks ago. Here's a timeline of what we've done so far:
May 18th - 1st appt with Dr. David
May 19th - started epsom salt baths (1/2 cup per bath) & cod liver fish oil (1 tsp.)
May 21st - stopped cod liver fish oil (supposed to wait until he's been in the epsom salt baths for 1 week before starting, so I stopped to get things back on track).
May 25th - started cod liver fish oil again (1.5 tsp., increasing to 2 tsp.)
May 27th - started NuThera hypoallerginic vitamins (without A & D). 2 capsules per day, mixed with milk or juice.
May 30th - gathered stool and urine samples for labs. Sent in Fedex.
Dr. Berger thinks Holden has a sulfate deficiency, based on a few of his symptoms that suggest it. His symptoms include: night sweats, bumps (or rash) on the back of his upper arm, and the tips of his ears are more red than his cheeks. He explained that our bodies need sulfate to be able to detox itself from toxins that are in our bodies. The epsom salt baths are supposed to help replinish the sulfate. Based on what I told him, he thinks I may have a "sluggish" detox system too. Which means that it wasn't a good thing to consume a lot of sushi and tuna melts while pregnant with him.
The cod liver fish oil is from Nordic Naturals. It's strawberry flavored. I can't stand the smell of it, but Holden doesn't seem to mind the taste, too much anyway. Dr. David says after 2 weeks or so on the fish oil, we should see an increase in attention, focus, and eye contact. I hope so.
The stool and urine samples I'm sending off today are to test for a huge array of things. Overgrowth of yeast, which he suspects he has from the prolonged use of antibiotics. Holden was on antibiotics for the first 14 months of his life due to hydronepherosis and bi-lateral kidney reflux. I think this urine test will also test for toxins and metals in his system.
Dr. Berger also suggested a few things for me since I'm entering the 3rd trimester of this pregnancy. 1.) he suggested I take 1 capsule of omega 3's fish oil everyday (which I purchased from him). 2.) epsom salt baths. 3.) Vitamin B12 w/folinic acid nasal spray. I haven't gotten this yet, it had to go through a compound pharmacy.
Our followup appointment is June 18th. At that appointment, they'll do bloodwork, which will not be fun. Dietrich will definitely be going to that appointment with me!
So, we're hoping for the best. I've talked to a lot of moms and if nothing else, my son will be more healthy than he ever has. I truly believe that his autism and symptoms were triggered by the vaccines he received, the antibiotic use, and other environmental factors. I hope we can get his body and brain back to where it should be, so that we can begin his recovery.
*crossing everything I have*
May 18th - 1st appt with Dr. David
May 19th - started epsom salt baths (1/2 cup per bath) & cod liver fish oil (1 tsp.)
May 21st - stopped cod liver fish oil (supposed to wait until he's been in the epsom salt baths for 1 week before starting, so I stopped to get things back on track).
May 25th - started cod liver fish oil again (1.5 tsp., increasing to 2 tsp.)
May 27th - started NuThera hypoallerginic vitamins (without A & D). 2 capsules per day, mixed with milk or juice.
May 30th - gathered stool and urine samples for labs. Sent in Fedex.
Dr. Berger thinks Holden has a sulfate deficiency, based on a few of his symptoms that suggest it. His symptoms include: night sweats, bumps (or rash) on the back of his upper arm, and the tips of his ears are more red than his cheeks. He explained that our bodies need sulfate to be able to detox itself from toxins that are in our bodies. The epsom salt baths are supposed to help replinish the sulfate. Based on what I told him, he thinks I may have a "sluggish" detox system too. Which means that it wasn't a good thing to consume a lot of sushi and tuna melts while pregnant with him.
The cod liver fish oil is from Nordic Naturals. It's strawberry flavored. I can't stand the smell of it, but Holden doesn't seem to mind the taste, too much anyway. Dr. David says after 2 weeks or so on the fish oil, we should see an increase in attention, focus, and eye contact. I hope so.
The stool and urine samples I'm sending off today are to test for a huge array of things. Overgrowth of yeast, which he suspects he has from the prolonged use of antibiotics. Holden was on antibiotics for the first 14 months of his life due to hydronepherosis and bi-lateral kidney reflux. I think this urine test will also test for toxins and metals in his system.
Dr. Berger also suggested a few things for me since I'm entering the 3rd trimester of this pregnancy. 1.) he suggested I take 1 capsule of omega 3's fish oil everyday (which I purchased from him). 2.) epsom salt baths. 3.) Vitamin B12 w/folinic acid nasal spray. I haven't gotten this yet, it had to go through a compound pharmacy.
Our followup appointment is June 18th. At that appointment, they'll do bloodwork, which will not be fun. Dietrich will definitely be going to that appointment with me!
So, we're hoping for the best. I've talked to a lot of moms and if nothing else, my son will be more healthy than he ever has. I truly believe that his autism and symptoms were triggered by the vaccines he received, the antibiotic use, and other environmental factors. I hope we can get his body and brain back to where it should be, so that we can begin his recovery.
*crossing everything I have*
5.17.2007
"sissy"
I went in to wake up Holden this morning. Zoe came in and got on the bed. She went up to him to give him a kiss and he said "sissy". Her eyes got SO big and she said "mama, he said SISSY". I said "yes, he did sweetie". He smiled. When it was time to take her to school, I told him we were taking sissy to school. We walked into the garage and he said "sissy" again. It just made her day. And mine, too.
5.16.2007
moving on
I finally got a few calls from the providers who will be doing Holden's in-home therapy from Early Intervention. Finally. The behavior therapy will start the 1st week of June. I don't have exact dates and times yet, she's calling me next week to give me those. Let's just hope she actually calls. If not, I'll call again. I think they know that about me by now. The Speech therapist called me today. She's going to try and schedule something for as soon as next week, so that would be nice. Should know for sure in a few days, as she "said" she'd call me back. I'm hopeful, she sounds 'nice'.
Holden has an appointment with Dr. Berget in Tampa. He's a pediatrician (M.D.), but he's also a DAN! doctor. I don't know what to expect with the first appointment, but I'm anxious to get the biomedical approach started. I've talked to a lot of moms lately, and the majority have seen improvements in their children. I firmly believe this will be Holden's case, too.
I've started going to a playgroup once a week through EI. It's held at a local church, and even though the 1st time (last week), Holden really just played with the toys, it was nice. He was at least around other people. And, the other kids there were either too young to play with, or weren't interested either. So, they're having another one tomorrow and I'm hopeful that he'll "play". I also met another mom with a 2.5 year old diagnosed with PDD. She's asked us to come over next week for a playdate. Curious to see how the kids react without so many people and toys around.
I took him to the mall playground today. It was great, actually. He did awesome. He was running around, just like the other kids his age - bumping into other kids. Laughing, running, playing. He seemed to really have fun. He was smiling. He even went up to a few kids, but, honestly, I think it was just because he wanted to steal their binkies. Oh well, I'm going to count it as being somewhat social! He didn't avoid them, afterall.
Zoe's almost out of school. She gets out at 1pm on Friday, Monday and next Tuesday. Then she's done for THREE whole months. School starts late next year. August 21st. I can't believe she'll be in the 3rd grade. Wow, how time flies. She's such a good kid though. We are so lucky. She's beautiful, smart, nice, polite, and respectful. I can't tell you the number of times that adults (kid's parents, or just people we pass in the supermarket) have told me how "polite" she is. It's so good to hear coming from her peer's parents. I've mentioned to Dietrich that I actually would prefer her be more polite and respectful to other people and their homes, than to us! I tell her every day how much I love her because I just don't want a day to go by without her knowing how much she's loved.
Lucky, is what we are.
Lucky, is what we are.
And, here's a picture of the little guy in-utero. Today, I'm 26w1d.
5.08.2007
Early Intervention & MORE progress
Everyone tells you "you're doing the right thing by getting your son help while he's young" and "early intervention really works!".
Well, if I could get a therapist to call me back, then I might agree with them. It's been almost 3 weeks since Holden's evaluation and services were approved. 3 different therapies: at-home speech (2x per week), at-home behavior (3 hours per week), and behavior/daycare environment (3 hours per day). Funny thing is, the 3 hours per week of home behavior therapy goes away once he gets into the preschool/daycare environment. But that's beside the point. Anyway. I've called both consulting companies for the speech and at-home behavior therapy. I'm now being told that he's been "assigned" to a therapist, so the therapist will call me back to schedule an initial appointment and his weekly therapies. No call. No one has called. I've called every 2 days, asking for updates. Yesterday, I was told that the speech therapist that he's been assigned to just happens to be out of town this week and "will be back sometime next week". Meaning that she'll have to play catch up and probably won't be able to call me until the week after, and then not schedule an initial appointment with us until the following week. So, yeah. Probably at least another 3 weeks until we can get in for speech. The at-home behavior people tell me he's been assigned ... just have to wait for the therapist to call. I called for an update yesterday and left a message. No call back yet. The daycare/preschool ABA thing - they don't have an opening right now and it may be as late as June/July before then do. Which really means August/September in english. I am frustrated people. Everyone tells me what a great job I'm doing getting him into Early Intervention so "early". Well, if I'd waited another 2 months, he would be turning THREE before they made any appointments, and he wouldn't qualify any longer. Every DAY that goes by, I get a little more pissed that no one's taking me seriously.
Progress. This is what keeps me going and helps me have a positive outlook . Holden's saying "mama" now. I mean, he said it before - but stopped when he lost all language. BUT, he said it again. And he keeps saying it, although I'm not sure he is using it in the corrrect text. He did look at me once and said "mama", so I know he used it correctly at least 1 time. He's also starting to imitate me. I stick out my tongue, he sticks out his (I think just to lick me really, but still, I'll take it!). About 20 minutes ago, I took his binky and held it out of reach and tried to make him say it - or at least make the "ba-ba-ba-ba" sound for it. He looked at me when I said "ba-ba-ba-ba" and he repeated the sound. He's NEVER done that. I take that to mean that he's more aware and if I can get him to imitate sounds - maybe speech and language will follow. That's my goal anyway.
We went to visit my mom over the weekend. Zoe and Dietrich were out of state, so it was just me and Holden. We went to my aunt's house. Holden was playing on the floor and she said "he just looks like a normal little boy to me". It felt good. Because, I've always said that if you didn't know the signs, you would look at him and just think he's like any other 2 year old. He was very "social" with them, too. And he's not around them much, so it's not because he's used to them. He took my aunt's hand and brought her into their kitchen to ask for a drink. I was shocked that he took someone else's hand but mine.
After we got home from our little trip away, we stopped at the grocery store. We were standing at the deli counter and a dad came by with his little boy in a shopping cart. Holden looked at the little boy, stared at him practically, and watched him go by. He normally doesn't notice other people, and especially kids. When he did that, my heart smiled.
Today, while watching the Wiggles on TV, they were running in place, singing a song - and I looked and Holden was watching and running around like they were. He was imitating them. He's never done that before.
So, although I'm dealing with a crap system that takes 2 months to get services for my son who needs them - I still see the progress he's making and it makes me happy. I'm playing the role of "mama" and therapist right now, and of course I don't mind. I'll do anything to help him. But, sometimes I'm scared I'm not doing things right. I just need some guidance, and it seems almost impossible to get.
Well, if I could get a therapist to call me back, then I might agree with them. It's been almost 3 weeks since Holden's evaluation and services were approved. 3 different therapies: at-home speech (2x per week), at-home behavior (3 hours per week), and behavior/daycare environment (3 hours per day). Funny thing is, the 3 hours per week of home behavior therapy goes away once he gets into the preschool/daycare environment. But that's beside the point. Anyway. I've called both consulting companies for the speech and at-home behavior therapy. I'm now being told that he's been "assigned" to a therapist, so the therapist will call me back to schedule an initial appointment and his weekly therapies. No call. No one has called. I've called every 2 days, asking for updates. Yesterday, I was told that the speech therapist that he's been assigned to just happens to be out of town this week and "will be back sometime next week". Meaning that she'll have to play catch up and probably won't be able to call me until the week after, and then not schedule an initial appointment with us until the following week. So, yeah. Probably at least another 3 weeks until we can get in for speech. The at-home behavior people tell me he's been assigned ... just have to wait for the therapist to call. I called for an update yesterday and left a message. No call back yet. The daycare/preschool ABA thing - they don't have an opening right now and it may be as late as June/July before then do. Which really means August/September in english. I am frustrated people. Everyone tells me what a great job I'm doing getting him into Early Intervention so "early". Well, if I'd waited another 2 months, he would be turning THREE before they made any appointments, and he wouldn't qualify any longer. Every DAY that goes by, I get a little more pissed that no one's taking me seriously.
Progress. This is what keeps me going and helps me have a positive outlook . Holden's saying "mama" now. I mean, he said it before - but stopped when he lost all language. BUT, he said it again. And he keeps saying it, although I'm not sure he is using it in the corrrect text. He did look at me once and said "mama", so I know he used it correctly at least 1 time. He's also starting to imitate me. I stick out my tongue, he sticks out his (I think just to lick me really, but still, I'll take it!). About 20 minutes ago, I took his binky and held it out of reach and tried to make him say it - or at least make the "ba-ba-ba-ba" sound for it. He looked at me when I said "ba-ba-ba-ba" and he repeated the sound. He's NEVER done that. I take that to mean that he's more aware and if I can get him to imitate sounds - maybe speech and language will follow. That's my goal anyway.
We went to visit my mom over the weekend. Zoe and Dietrich were out of state, so it was just me and Holden. We went to my aunt's house. Holden was playing on the floor and she said "he just looks like a normal little boy to me". It felt good. Because, I've always said that if you didn't know the signs, you would look at him and just think he's like any other 2 year old. He was very "social" with them, too. And he's not around them much, so it's not because he's used to them. He took my aunt's hand and brought her into their kitchen to ask for a drink. I was shocked that he took someone else's hand but mine.
After we got home from our little trip away, we stopped at the grocery store. We were standing at the deli counter and a dad came by with his little boy in a shopping cart. Holden looked at the little boy, stared at him practically, and watched him go by. He normally doesn't notice other people, and especially kids. When he did that, my heart smiled.
Today, while watching the Wiggles on TV, they were running in place, singing a song - and I looked and Holden was watching and running around like they were. He was imitating them. He's never done that before.
So, although I'm dealing with a crap system that takes 2 months to get services for my son who needs them - I still see the progress he's making and it makes me happy. I'm playing the role of "mama" and therapist right now, and of course I don't mind. I'll do anything to help him. But, sometimes I'm scared I'm not doing things right. I just need some guidance, and it seems almost impossible to get.
Subscribe to:
Posts (Atom)
