So sorry for slacking on this blog. There's just so much going on right now. My husband, Steve, was in a car accident on Thursday. Steve is mostly OK, though he's having some back pain and had to take some time off work. The car is toast. We were really hoping to get another couple of years out of Steve's car, so that we wouldn't have to be making 2 car payments, but God/fate/karma/whatever had other plans. I'm sure we'll get through, but we've been really busy trying to get all of this straightened out.
In the meantime, Jesse is doing really well. His language is really coming along. His list of words, both imitated and spontaneous, grows daily. His SLP is really happy with his progress. I also have a book I'm reading that is giving me some great ideas on how to help this along at home as well. It's called Motivate to Communicate. It's written for kids on the spectrum, but I have a feeling it would really work well for kids with a "simple" speech delay as well. I'm not that far into it yet, but I'm hoping to have it finished by the weekend, and can give you a review of it.
We've also been assigned a senior therapist! Yay!!! She's actually still training, so her supervisor will be coming along with her and helping her, which is great. They both paid us a visit this morning. We mostly just went over Jesse's history and what our main concerns were. They also gave us a bit of an overview of what the next few weeks will consist of. On April 12th, they'll return and do Jesse's evaluations, and then on April 19th (tentatively) we'll have Jesse's ISSP (Individualized Supports and Services Plan...I think that's what it stands for). That's when we'll come up with the plan of attack for Jesse. It's only when we have the ISSP that we get funding for the home therapist. (Speaking of which, we still haven't hired anyone yet. I have about 40 resumes here, though, to look through.)
I also keep meaning to do a little book report, of sorts, on the book I just finished a couple of days ago. It's called Changing the Course of Autism: A Scientific Approach for Parents and Physicians. It's not an easy read by any stretch of the imagination. There's a lot of anatomy and physiology and immunology knowledge needed to understand it well. It did challenge me to recall a lot of what I learned in my B.Sc. and my B.N. I think it's worth reading though, for any parent who has a child on the spectrum. (And for any doctor treating a child on the spectrum.) Jesse's waking up from his nap, so I can't get into it now, but I will definitely give a review of this book later.
Tuesday, March 30, 2010
Tuesday, March 23, 2010
Holy crap!
No this isn't another poop post. LOL
Jesse said a TWO WORD PHRASE!!! I'm beyond over the moon about it. This morning when he woke up he climbed in bed and nursed, as per usual. When he was done, he pulled my shirt down and waved at my chest and said "Bah bees!" Translation: "bye boobies." I'm just so thrilled!
Jesse said a TWO WORD PHRASE!!! I'm beyond over the moon about it. This morning when he woke up he climbed in bed and nursed, as per usual. When he was done, he pulled my shirt down and waved at my chest and said "Bah bees!" Translation: "bye boobies." I'm just so thrilled!
Bad Day
Today started off on the wrong foot and that really set the tone. We both woke up at 7:15 am and had to get ready quickly for Jesse's speech therapy at 8:30 am. Jesse wanted to nurse, and he did, but apparently not long enough. As soon as I started trying to get him ready - change his diaper, get him dressed, wash his face, etc... - he freaked. Then he wouldn't eat breakfast, refused to put on his coat and shoes, and was just an over all pain in the rear. It didn't help that I was running on two hours of sleep.
So we were late for our 1/2 hour speech therapy. And when we got there, all Jesse wanted to do was nurse. She did give me some more ideas though for helping Jesse. It's all stuff I've already been doing with Jesse, just less intensive. Things like stressing the words in, out, on, off, up, down during play and in our every day life. I have to narrate everything. It's a bit difficult to get used to, since I'm not really a very talkative person (something I've been working on since I first noticed Jesse's speech issues a year ago). He is picking it up though. He can say all of those words, even if he only says up and off spontaneously right now.
After that we went to an active play playgroup, which went relatively well. At least it helped Jesse burn off some energy. Later though when I put him down for a nap, he wouldn't let me get up (he'd wake if I moved). I have so much stuff to do, and I really needed to use his nap time to do it! (((sigh)))
I have another 15-20 resumes (ABA home therapist applicants) to print. I have probably 40 resumes to review. I still have to figure out a way to rate them and decide who to interview. We were finally assigned a senior therapist (this past Friday...squeaky wheel gets the grease, I guess) but we don't meet with her til March 30th. So I have no idea how to go about hiring someone. And since we won't have had an ISSP yet, I have no idea how many hours we will qualify for, so I have no idea what to tell the home therapist applicants. The social worker was hoping we'd have someone hired by the time the ABA therapy training session comes up in April, but it's not looking hopeful. Steve and I will still do the training (if my manager gives me the time off, that is). But we may end up holding off for a couple weeks or more on hiring someone. And to be honest, I'm not that worried about it. I know that sounds horrible, but really, Jesse is doing pretty well lately (save for today, I guess).
I also didn't get the chance to call the physiotherapist and ask about a joint PT/OT appointment. I really need to get on that. After speaking with some people who work at children's rehab or development departments, I'm thinking we may need to go private with OT as well. I'm just worried that these private services are going to result in a lack of communication between care providers.
I'm just feeling a bit overwhelmed at the moment.
So we were late for our 1/2 hour speech therapy. And when we got there, all Jesse wanted to do was nurse. She did give me some more ideas though for helping Jesse. It's all stuff I've already been doing with Jesse, just less intensive. Things like stressing the words in, out, on, off, up, down during play and in our every day life. I have to narrate everything. It's a bit difficult to get used to, since I'm not really a very talkative person (something I've been working on since I first noticed Jesse's speech issues a year ago). He is picking it up though. He can say all of those words, even if he only says up and off spontaneously right now.
After that we went to an active play playgroup, which went relatively well. At least it helped Jesse burn off some energy. Later though when I put him down for a nap, he wouldn't let me get up (he'd wake if I moved). I have so much stuff to do, and I really needed to use his nap time to do it! (((sigh)))
I have another 15-20 resumes (ABA home therapist applicants) to print. I have probably 40 resumes to review. I still have to figure out a way to rate them and decide who to interview. We were finally assigned a senior therapist (this past Friday...squeaky wheel gets the grease, I guess) but we don't meet with her til March 30th. So I have no idea how to go about hiring someone. And since we won't have had an ISSP yet, I have no idea how many hours we will qualify for, so I have no idea what to tell the home therapist applicants. The social worker was hoping we'd have someone hired by the time the ABA therapy training session comes up in April, but it's not looking hopeful. Steve and I will still do the training (if my manager gives me the time off, that is). But we may end up holding off for a couple weeks or more on hiring someone. And to be honest, I'm not that worried about it. I know that sounds horrible, but really, Jesse is doing pretty well lately (save for today, I guess).
I also didn't get the chance to call the physiotherapist and ask about a joint PT/OT appointment. I really need to get on that. After speaking with some people who work at children's rehab or development departments, I'm thinking we may need to go private with OT as well. I'm just worried that these private services are going to result in a lack of communication between care providers.
I'm just feeling a bit overwhelmed at the moment.
Thursday, March 18, 2010
Parents meeting with Dr. C
We had an appointment with Dr. C yesterday at her office. It was just for Steve and I to talk with her, since I was too stunned to think the last time we had an appointment, and Steve wasn't even there. Jesse spent the morning at day care.
I think Steve feels better for going and asking questions and getting her take on things. Me? I'm leaning towards taking Jesse out of the province to see another specialist. Possibly. It's not that I don't like Dr. C. I do. She's really pretty great, actually, and she has a special needs child of her own, so she kinda gets it. But I don't think she quite understands where I'm coming from on the gut/brain link issue (though she didn't completely discount it).
She agreed that Jesse really does need to see an occupational therapist. That might be tricky though, since she heard a rumour that the OTs at children's rehab aren't even taking new patients, and even if they are, the waiting list is about 18 months long. IN-FREAKING-SANE! She's sending off a referral anyways, and stressing Jesse's previous orthopedic issues (heel cord contracture) that likely resulted from his sensory problems. She also thinks that OT may be able to help him with his speech, since they'd be able to address any issues he has with apraxia. She ALSO wants me to call up Jesse's PT and ask her to set up a joint appointment with an OT, which wouldn't entail such a long wait. Hopefully. Our other option is to go private, and Dr. C did give us the name of a private OT in the area who works with kids with development issues. That's definitely an options. I'm pretty certain we have coverage for that under Steve's insurance.
Overall it was a good appointment. Dr. C did stress that with the gains Jesse is making (especially now with speech) that she would like to re-test Jesse with the ADOS at age 3, with the hope that he would no longer fit the diagnosis. My fingers are crossed that we can get to that point in a year. If the past two weeks are any indication, it's a definite possibility!
I think Steve feels better for going and asking questions and getting her take on things. Me? I'm leaning towards taking Jesse out of the province to see another specialist. Possibly. It's not that I don't like Dr. C. I do. She's really pretty great, actually, and she has a special needs child of her own, so she kinda gets it. But I don't think she quite understands where I'm coming from on the gut/brain link issue (though she didn't completely discount it).
She agreed that Jesse really does need to see an occupational therapist. That might be tricky though, since she heard a rumour that the OTs at children's rehab aren't even taking new patients, and even if they are, the waiting list is about 18 months long. IN-FREAKING-SANE! She's sending off a referral anyways, and stressing Jesse's previous orthopedic issues (heel cord contracture) that likely resulted from his sensory problems. She also thinks that OT may be able to help him with his speech, since they'd be able to address any issues he has with apraxia. She ALSO wants me to call up Jesse's PT and ask her to set up a joint appointment with an OT, which wouldn't entail such a long wait. Hopefully. Our other option is to go private, and Dr. C did give us the name of a private OT in the area who works with kids with development issues. That's definitely an options. I'm pretty certain we have coverage for that under Steve's insurance.
Overall it was a good appointment. Dr. C did stress that with the gains Jesse is making (especially now with speech) that she would like to re-test Jesse with the ADOS at age 3, with the hope that he would no longer fit the diagnosis. My fingers are crossed that we can get to that point in a year. If the past two weeks are any indication, it's a definite possibility!
That mom
You know the one. You can hear her child coming a mile away and you roll your eyes. "Why would anyone buy those shoes for their toddler?!!!" you ask to the person standing beside you. "Don't they realize how annoying that is!!!"
Well, I used to be that mom who indignantly rolled her eyes and scoffed at the other mom who had decided to wear squeaky shoes on their child. Now I am the mom that has decided that squeaky shoes are well worth the annoyance factor, particularly if they encourage my little boy to walk heel-to-toe, instead of on his tip-toes all of the time. After Jesse spent 5 weeks in a cast last summer, after he was cut with dirty casting scissors, after he went through three rounds of bloodwork to make sure he had not contracted HIV or Hepatitis B from the dirty casting scissors, I would endure squeaking day-in and day-out to prevent that from happening again.
If you're that mom, the one rolling her eyes at me (like I used to do to others), then thank your lucky stars that you don't need to resort to such measures. It's the whole, "until you've walked a mile in someone elses shoes" sort-of-thing. No pun intended.
And now what you've all been waiting for:
As you can probably see, they're working! The squeaker is in the heel, so every time Jesse squeaks, it means he's walking flat-footed, instead of on his toes. I'm a happy mama!
Many thanks to Amy, who suggested this to me! Any thoughts of becoming an occupational therapist Amy?
Well, I used to be that mom who indignantly rolled her eyes and scoffed at the other mom who had decided to wear squeaky shoes on their child. Now I am the mom that has decided that squeaky shoes are well worth the annoyance factor, particularly if they encourage my little boy to walk heel-to-toe, instead of on his tip-toes all of the time. After Jesse spent 5 weeks in a cast last summer, after he was cut with dirty casting scissors, after he went through three rounds of bloodwork to make sure he had not contracted HIV or Hepatitis B from the dirty casting scissors, I would endure squeaking day-in and day-out to prevent that from happening again.
If you're that mom, the one rolling her eyes at me (like I used to do to others), then thank your lucky stars that you don't need to resort to such measures. It's the whole, "until you've walked a mile in someone elses shoes" sort-of-thing. No pun intended.
And now what you've all been waiting for:
As you can probably see, they're working! The squeaker is in the heel, so every time Jesse squeaks, it means he's walking flat-footed, instead of on his toes. I'm a happy mama!
Many thanks to Amy, who suggested this to me! Any thoughts of becoming an occupational therapist Amy?
Monday, March 15, 2010
Poop
I know poop seems unrelated to Jesse's diagnosis, but I have a very big suspicion that it has a lot to do with it. So I'm documenting this here too. Jesse's poops have been nasty, nasty, nasty for several months now. Usually he has several each day. They're mostly very loose. Occasionally, he'll go up to 3 days between poops (with much discomfort and acting out), but then when he goes, it'll be either a normal poop or a loose one.
So last night, when Jesse had a blow out, it was really nothing new. Except that this poop left a chemical burn on Jesse, similar to a bad sunburn. It's even on his thighs where it leaked out of his diaper. And yes, his diaper was changed right away. The burn was still there this morning.
Poor kiddo.
So last night, when Jesse had a blow out, it was really nothing new. Except that this poop left a chemical burn on Jesse, similar to a bad sunburn. It's even on his thighs where it leaked out of his diaper. And yes, his diaper was changed right away. The burn was still there this morning.
Poor kiddo.
What a breakthrough!
I feel like the big brick wall I've been bashing my head against for so long has started to crumble. We had Jesse's weekly speech therapy appointment this morning. Jesse's SLP, M., was THRILLED with his progress! I took my Flip video camera with the video of Jesse talking in the bathtub from last night and showed her. So right away she tossed her plan for incorporating signs into his therapy and wants to dive right into increasing his vocabulary and getting him saying things spontaneously.
During the appointment she got him to say "eat" and "bus." He's also now saying "bye." I can hardly keep up! She gave me some tips for how to play with him and encourage spontaneous talking and new words. Such a productive 1/2 hour!
In other news:
We had our follow-up with the physiotherapist. She gave me some more information sheets on how to deal with the sensory issues. We have some proprioception work to do with him. She's pleased with his range of motion in his ankles, but thinks that he could tighten up if he continues to toe walk so much. She advised me to do some stretches with him and keep an eye on his range of motion. She'll keep his file open, so that if I need to, I can call her up and make an appointment and we can get Jesse right back in to see her without the
wait. She did think Occupational Therapy would be a good idea though, to help with the sensory issues, and I will be asking for a referral to OT at our appointment with Dr. C on Wednesday.
I also spoke with the social worker, J., this morning. We still don't know when we'll be assigned a senior therapist. It was supposed to be a 2-3 week wait. It's now been 4 weeks. And J. said that she "hopes" it'll only be "another week or so." So frustrating! I told her that this makes it REALLY difficult in terms of hiring a home therapist. They want someone hired by the next ABA training session (April 6-8). But how am I supposed to hire someone when I have no idea how many hours I'll be hiring someone for? I don't know if it'll be 15 hours, 20 hours, 30 hours? Something in between? Who would even be willing to take a job if they have no clue what kind of hours I can offer them? So I'm sort of at a loss as to what to do about that right now. I guess I just have to keep my fingers crossed that someone will get the lead out get moving on this.
I have to focus on the positive though, right? And I am. I'm going to work on Jesse's speech with him and do as much as I can. He's already come SO FAR in just the last couple of weeks. It's actually really exciting!
During the appointment she got him to say "eat" and "bus." He's also now saying "bye." I can hardly keep up! She gave me some tips for how to play with him and encourage spontaneous talking and new words. Such a productive 1/2 hour!
In other news:
We had our follow-up with the physiotherapist. She gave me some more information sheets on how to deal with the sensory issues. We have some proprioception work to do with him. She's pleased with his range of motion in his ankles, but thinks that he could tighten up if he continues to toe walk so much. She advised me to do some stretches with him and keep an eye on his range of motion. She'll keep his file open, so that if I need to, I can call her up and make an appointment and we can get Jesse right back in to see her without the
wait. She did think Occupational Therapy would be a good idea though, to help with the sensory issues, and I will be asking for a referral to OT at our appointment with Dr. C on Wednesday.
I also spoke with the social worker, J., this morning. We still don't know when we'll be assigned a senior therapist. It was supposed to be a 2-3 week wait. It's now been 4 weeks. And J. said that she "hopes" it'll only be "another week or so." So frustrating! I told her that this makes it REALLY difficult in terms of hiring a home therapist. They want someone hired by the next ABA training session (April 6-8). But how am I supposed to hire someone when I have no idea how many hours I'll be hiring someone for? I don't know if it'll be 15 hours, 20 hours, 30 hours? Something in between? Who would even be willing to take a job if they have no clue what kind of hours I can offer them? So I'm sort of at a loss as to what to do about that right now. I guess I just have to keep my fingers crossed that someone will get the lead out get moving on this.
I have to focus on the positive though, right? And I am. I'm going to work on Jesse's speech with him and do as much as I can. He's already come SO FAR in just the last couple of weeks. It's actually really exciting!
"esse's!"
In case you can't read the title, that would be "Jesse's!" without the "J." Our awesome kiddo is saying his name again! He's dropping the J, but we still understand him. And it's quite obvious that he's referring to things as being his.
And not only that, but tonight he really blew us out of the water. Nearly literally. Tonight he added another...oh, six words to his vocabulary!!!
In case you didn't that, it's "nose," "eyes," "ears," "hair," "knees," and "toes." They weren't all that clear in the video, but he did say them all more clearly at some point this evening.
And yes, I did a dorky little celebratory dance. :)
And not only that, but tonight he really blew us out of the water. Nearly literally. Tonight he added another...oh, six words to his vocabulary!!!
In case you didn't that, it's "nose," "eyes," "ears," "hair," "knees," and "toes." They weren't all that clear in the video, but he did say them all more clearly at some point this evening.
And yes, I did a dorky little celebratory dance. :)
Friday, March 12, 2010
Frustration
It's been 4 weeks since our initial meeting with the social worker. We were told then that a senior therapist would be assigned to us within three weeks. It's now been 4 weeks. Four LONG weeks. I called and left a message with the social worker, but she hasn't called me back. This is just not sitting well with me! The senior therapist is supposed to do 3-4 weekly appointments with Jesse to help determine his therapy needs. Until then, we don't know how many hours of ABA therapy per week Jesse will need. How are we supposed to hire someone when we have no if we're hiring for 15 hours per week, or 30? And a little bit of guidance as to what qualifications or characteristics of skills to look for in a home therapist would be helpful.
Somebody needs to get with the program! Argh!
Somebody needs to get with the program! Argh!
Weirdness
I do realize that I've been posting like mad. It'll settle down in the next week, I promise. I have 4 12-hour shifts in the next week, so I won't have much spare time. But I HAD to document this so that I wouldn't forget it.
Today at the gym, Jesse started running around with his head held to his shoulder. I think it was the right shoulder, but I could be mistaken. He did it a few times. And I'm trying to remember if he had his arm raised or not. It reminded me of what he does when he's pretending to talk on the phone sometimes.
Very weird.
Today at the gym, Jesse started running around with his head held to his shoulder. I think it was the right shoulder, but I could be mistaken. He did it a few times. And I'm trying to remember if he had his arm raised or not. It reminded me of what he does when he's pretending to talk on the phone sometimes.
Very weird.
Doubt or Denial?
Have I mentioned that there are times that I really doubt Jesse's diagnosis. I mean, REALLY doubt it. Today at the active play time at the local gym, Jesse approached a mama and her sleeping baby. He gently patted the baby's head, gave her a kiss, and lightly nuzzled her. Then he pointed out the baby's ears and eyes and nose to me. He was captivated by this little baby girl. Totally made my heart melt. And he's been so insistent on us playing with him too. He says "Mom" or "Da," points to a chair at his little table (indicating he wants us to sit on the teeny tiny chair that we're both afraid we'll crush) and the goes on to pretend to serve dinner and to eat and drink.
And then I compare Jesse to age-matched peers and I come crashing back down to earth. They're talking in sentences. They're singing. They're engaging other children their age in play.
So I guess my doubt is really just denial?
And then I compare Jesse to age-matched peers and I come crashing back down to earth. They're talking in sentences. They're singing. They're engaging other children their age in play.
So I guess my doubt is really just denial?
Thursday, March 11, 2010
Words
Jesse is now 26 months old. Time sure flies. Since Jesse's vocabulary changes so much (gets larger, then smaller, than larger, then smaller....you get the idea) I thought it would be a good idea to document what he's saying every month or so. It'll give me an written record of his progress. So here goes:
Mom, Momber, Bamber (refers to me)
Da, Daddy (refers to Steve)
Josh (in reference to his cousin and his uncle - sounds like "dosh")
hi
baby
up
juice (sounds like "dooce")
pop (both in reference to popping bubbles and a couple of times to refer to his grandfather)
bubbles (sounds like "babas" - this is new as of today)
thank-you (sounds like "ah-su," which doesn't really sound like thank-you, but we're convinced that's what it means)
no
this
oh
boo
uh oh
This list has grown nicely in the last week or so actually. Juice, pop, bubbles, no, baby, and hi are all pretty new. (Though he has had some of these in the past and lost them for a significant period of time.) It's still a far cry from the 200+ words he should have by this point, but it's progress, right?
***Don't mind me if this list changes over the next day or so...I might have missed a couple
Mom, Momber, Bamber (refers to me)
Da, Daddy (refers to Steve)
Josh (in reference to his cousin and his uncle - sounds like "dosh")
hi
baby
up
juice (sounds like "dooce")
pop (both in reference to popping bubbles and a couple of times to refer to his grandfather)
bubbles (sounds like "babas" - this is new as of today)
thank-you (sounds like "ah-su," which doesn't really sound like thank-you, but we're convinced that's what it means)
no
this
oh
boo
uh oh
This list has grown nicely in the last week or so actually. Juice, pop, bubbles, no, baby, and hi are all pretty new. (Though he has had some of these in the past and lost them for a significant period of time.) It's still a far cry from the 200+ words he should have by this point, but it's progress, right?
***Don't mind me if this list changes over the next day or so...I might have missed a couple
Wednesday, March 10, 2010
Light bulb moment
I hope I don't have to pay Dr. Phil every time I use that, but it's the easiest way to describe how things clicked for me when I watched Dr. Temple Grandin's lecture. At about 00:02:43 she describes auditory issues in kids with ASDs. Even though auditory threshold ("hearing") is normal, their ability to hear auditory detail can be impaired. In addition to apraxia, I think that this may be part of why Jesse has such trouble with speech. One of the reasons I think this is because of his animal sounds. He makes the sounds for dog, cat, duck, and bear. But he drops the first part of each sound. Instead of "woof" it's "oof." So instead of "meow" it's "ow." Instead of "quack quack" it's "ack ack." Instead of "roar" it's "argh."
Here's a video to demonstrate what I mean. This was taken at the beginning of January of this year, just before Jesse's 2nd birthday.
The words that he has right now that start with a hard consonent sound (i.e. "mom," "da," "baby") are words that we've worked a lot on and enunciated the hell out of to try to get him to repeat. He has a lot of trouble acquiring words...a lot of trouble with consonant sounds. For example, he says "asu" for "thank-you."
Of course, I could be completely off the mark here and this might not be an issue at all. Either way, I hope that Jesse's new SLP can give us the tools to overcome whatever obstacles are in the way of Jesse being able to communicate with us.
And I thought I'd throw this in here...just because he's cute as hell:
Here's a video to demonstrate what I mean. This was taken at the beginning of January of this year, just before Jesse's 2nd birthday.
The words that he has right now that start with a hard consonent sound (i.e. "mom," "da," "baby") are words that we've worked a lot on and enunciated the hell out of to try to get him to repeat. He has a lot of trouble acquiring words...a lot of trouble with consonant sounds. For example, he says "asu" for "thank-you."
Of course, I could be completely off the mark here and this might not be an issue at all. Either way, I hope that Jesse's new SLP can give us the tools to overcome whatever obstacles are in the way of Jesse being able to communicate with us.
And I thought I'd throw this in here...just because he's cute as hell:
Monday, March 8, 2010
Doose!
We had our first appointment with our new SLP this morning. It went REALLY well. I'm more than pleased. The SLP, who I'll refer to as M., seems to know her stuff about ASDs. Jesse really seemed to be comfortable with her, and I was too. She asked me lots of questions and took my responses and concerns seriously. I also discussed with her one theory I have about Jesse's speech issues (again, I'll go more into this later). And she suggested that Jesse may have some apraxia, which is basically a motor issue affecting speech. I'm definitely thinking that this is a possibility.
Overall, M. was very pleased with Jesse. Jesse is very eager to communicate and does interact pretty well. So the big thing is to just get him communicating and expanding his vocabulary. She suggested working on both signing and speech. If apraxia is indeed an issue, then using signs until his motor skills catch up should be incredibly helpful.
Oh, and after our appointment, Jesse and I headed to McDonalds so that Jesse could play in the playroom to burn off some energy. Before we got out of the car he reached for his sippy cup and said "Doose!" (which is Jesse-speak for "juice"). That's the first time he's said that word unprompted. These are the little successes that keep me going.
Overall, M. was very pleased with Jesse. Jesse is very eager to communicate and does interact pretty well. So the big thing is to just get him communicating and expanding his vocabulary. She suggested working on both signing and speech. If apraxia is indeed an issue, then using signs until his motor skills catch up should be incredibly helpful.
Oh, and after our appointment, Jesse and I headed to McDonalds so that Jesse could play in the playroom to burn off some energy. Before we got out of the car he reached for his sippy cup and said "Doose!" (which is Jesse-speak for "juice"). That's the first time he's said that word unprompted. These are the little successes that keep me going.
Finally
For the last 5 weeks since Jesse's diagnosis, I've been cycling through avoidance and denial. Usually, when it's something that affects my child, I dive in head first and research the hell out of it. Not this time. I'm not sure why. Maybe because I don't want to admit that this is really happening. Perhaps because I'm afraid of what I'll find out. In the meantime, I've been going through the motions...scheduling appointments, going to doctor's offices, therapy appointments, meeting with the social worker to get the autism intervention program started, posting job ads. I also have my little project on my other blog There's Snow Place Like Home that's kept me busy. Kept my mind off of the big, fat elephant in the room.
But I couldn't avoid it forever.
These past couple of weeks I've been messaging back and forth with another mama with a son who has a son just a couple of months older than Jesse. She found this blog and realized that Jesse sounded very much like her little boy. She decided to get the ball rolling and get some evaluations. And even now, even before a diagnosis (or not, depending on the outcome of the evals) she has been researching the heck out of this. And our discussions have made me start to question things. We're all set to hire an ABA home therapist and do the training ourselves, yet we don't even know if this is going to help Jesse. We don't even know if this is going to HURT Jesse. I feel like I've let my son down, in a way, by going with the flow, and not figuring this stuff out for myself. I didn't go with the flow during my pregnancy. I didn't go with the flow during his birth. I didn't go with the flow when all the doctors were telling me Jesse was fine. So why now?
So I've started researching. As of last night, I started reading a blog this other mama linked me to, called A Little Bit Autistic. I haven't read it all yet...I'm starting from the beginning. And I can't say that I agree with all, or even very much of, what this blogger writes (though I have to say, I admire her honesty, her intellect, and her determination in finding the most appropriate treatment for her son). But this blog has given me a ton of food for thought, and provided links to some awesome resources. I've watched a lecture given by Temple Grandin on High Functioning Autism (HFA) and Asperger's (posted to Youtube). Some of what she said early in the lecture regarding sensory issues really struck me. (I'll post more on this in the coming day or so.) All of this has also given me the motivation to start reading the books I've ordered. I'm starting with Changing the Course of Autism. So far I've gotten through the Foreward, written by Katie Wright, daughter of the founders of Autism Speaks. What she has written has taken my breath away. Her son was also developing normally, and then suffered regression that lead to an autism diagnosis. He suffered with sleep issues, waking hourly overnight, and gastrointestinal issues, such as horrible diarrhea and food strikes. But the fact that, with the right care, her son is now making leaps and bounds in his development, is very reassuring, and gives me hope.
So, suffice it to say, I've finally dug my head out of the sand and I'm gearing myself up to face this head on. Not because I want to, but because I need to.
But I couldn't avoid it forever.
These past couple of weeks I've been messaging back and forth with another mama with a son who has a son just a couple of months older than Jesse. She found this blog and realized that Jesse sounded very much like her little boy. She decided to get the ball rolling and get some evaluations. And even now, even before a diagnosis (or not, depending on the outcome of the evals) she has been researching the heck out of this. And our discussions have made me start to question things. We're all set to hire an ABA home therapist and do the training ourselves, yet we don't even know if this is going to help Jesse. We don't even know if this is going to HURT Jesse. I feel like I've let my son down, in a way, by going with the flow, and not figuring this stuff out for myself. I didn't go with the flow during my pregnancy. I didn't go with the flow during his birth. I didn't go with the flow when all the doctors were telling me Jesse was fine. So why now?
So I've started researching. As of last night, I started reading a blog this other mama linked me to, called A Little Bit Autistic. I haven't read it all yet...I'm starting from the beginning. And I can't say that I agree with all, or even very much of, what this blogger writes (though I have to say, I admire her honesty, her intellect, and her determination in finding the most appropriate treatment for her son). But this blog has given me a ton of food for thought, and provided links to some awesome resources. I've watched a lecture given by Temple Grandin on High Functioning Autism (HFA) and Asperger's (posted to Youtube). Some of what she said early in the lecture regarding sensory issues really struck me. (I'll post more on this in the coming day or so.) All of this has also given me the motivation to start reading the books I've ordered. I'm starting with Changing the Course of Autism. So far I've gotten through the Foreward, written by Katie Wright, daughter of the founders of Autism Speaks. What she has written has taken my breath away. Her son was also developing normally, and then suffered regression that lead to an autism diagnosis. He suffered with sleep issues, waking hourly overnight, and gastrointestinal issues, such as horrible diarrhea and food strikes. But the fact that, with the right care, her son is now making leaps and bounds in his development, is very reassuring, and gives me hope.
So, suffice it to say, I've finally dug my head out of the sand and I'm gearing myself up to face this head on. Not because I want to, but because I need to.
Thursday, March 4, 2010
We're in business!
No, not really.
But I do have a business number now. Unfortunately, it's not because I'm starting my own cloth diapering business. (insert sigh here) I had to register for a Business Number with the Canada Revenue Agency so that we can hire, and pay, a home ABA therapist for Jesse. So that's done now, and I have placed an add with the HRDC job bank, which should be posted by tomorrow. I'm hoping it yields lots of great candidates. The listing will run for 2 weeks, ending on the 19th, and then we'll go through the applications and call some people for interviews. I'd really like to have someone hired by the time the 3-day ABA training takes place April 6th-8th. I'm starting to feel the pressure!
In other news, we now have some stretches/exercises to do with Jesse. His right ankle is getting tight again. We have a speech therapy appointment Monday morning (which will be covered up to $1000 yearly! Yay!). And Steve and I are going to a support group meeting tonight (NOT shopaholics anonymous, it's for parents of kids who are newly diagnosed). I hope it's helpful.
But I do have a business number now. Unfortunately, it's not because I'm starting my own cloth diapering business. (insert sigh here) I had to register for a Business Number with the Canada Revenue Agency so that we can hire, and pay, a home ABA therapist for Jesse. So that's done now, and I have placed an add with the HRDC job bank, which should be posted by tomorrow. I'm hoping it yields lots of great candidates. The listing will run for 2 weeks, ending on the 19th, and then we'll go through the applications and call some people for interviews. I'd really like to have someone hired by the time the 3-day ABA training takes place April 6th-8th. I'm starting to feel the pressure!
In other news, we now have some stretches/exercises to do with Jesse. His right ankle is getting tight again. We have a speech therapy appointment Monday morning (which will be covered up to $1000 yearly! Yay!). And Steve and I are going to a support group meeting tonight (NOT shopaholics anonymous, it's for parents of kids who are newly diagnosed). I hope it's helpful.
Tuesday, March 2, 2010
My Time Management Skills are Getting a Run for their Money!
Oh, boy....
We had our second appointment with the social worker today (well, I guess it's now yesterday....Monday, I mean). It was all about how to go about hiring a home therapist. Though the cost of the therapist will be paid for by the provincial autism program, Steve and I will be considered the employer. We have to get a business number, hire an accountant/book-keeping service, and do all the advertising, interviewing, and hiring ourselves. It's quite daunting! The social worker is hoping for us to advertise this week, start interviewing mid-month, and have someone hired and all the paperwork done by the time the ABA training session comes around the first week in April. Just submitting all the job postings and reading through resumes is going to be so time consuming! And then there's the interviewing! I really hope we can get this done in time!
Tomorrow (Tuesday) morning we have an appointment with a physiotherapist (PT) who works with kids on the spectrum. I'm hoping she'll be able to give us some direction regarding Jesse's toe-walking. He walks on his toes much more now than he does flat-footed...even in boots! I'm so worried that he'll develop another contracture and require casting again. I do NOT want to deal with ortho again! (But I think that's a story for another day.) The physiotherapist should be able to tell us whether or not we need to get Occupational Therapy (OT) involved. After his appointment we'll be getting Jesse's bloodwork done. We'll be at the hospital anyways, so it's as good a time as any.
We should have a senior therapist assigned to us at some point this week, or early next week. This person will over-see Jesse's home therapy and his progress in general. She will be a sort of mentor/supervisor for Jesse's home therapist. She'll be coming to our home once a week for the next 3-4 weeks to assess Jesse's needs so that we can develop a treatment plan. I'm really anxious to meet this person. I really hope she'll be a good fit.
Monday coming Jesse will be seeing his new Speech Language Pathologist (SLP). She has a weekly 1/2 hour appointment available for Monday mornings at 8:30. I jumped at it, since Jesse is still wait-listed for the Children's Rehab SLP for another few months. I really need to check out our insurance, since I know speech therapy has limited coverage ($500 or $1000, I can't remember). At $60/appointment, we're going to run out quickly. But you gotta do what you gotta do, right?
March 17th we have an appointment with Dr. C. Steve wasn't with Jesse and I when we went for the ADOS, when Jesse was diagnosed. Since we expected Jesse to emerge from the ADOS with a clean bill of health, we felt that it wasn't necessary for Steve to take a day off work to attend the appointment with us. So this appointment with Dr. C will give Steve a chance to talk discuss this diagnosis with the doctor. It'll be good for me too, since I was too shell-shocked the last time to really comprehend what she was telling me.
And to top it all off, at some point we should be receiving appointments for audiology and clinical nutrition as well. And then there's the three day ABA training in April that Steve and I will be attending, along with our newly-hired home therapist (as long as we can find an afternoon sitter, that is).
Have I mentioned I also work 60 hours every two weeks?
At least I've found a way to keep track of everything. Google Calendar has been a God send. I've set it to E-mail me reminders of appointments 24 hours prior. I've also been able to share the calendar with my husband as well, so that he can access it anytime, anywhere, from his Google account. I highly recommend it if you have a crazy, busy schedule and poor time management skills!
I guess that's enough of an update for now. I need to get to bed. We have a busy day tomorrow!
We had our second appointment with the social worker today (well, I guess it's now yesterday....Monday, I mean). It was all about how to go about hiring a home therapist. Though the cost of the therapist will be paid for by the provincial autism program, Steve and I will be considered the employer. We have to get a business number, hire an accountant/book-keeping service, and do all the advertising, interviewing, and hiring ourselves. It's quite daunting! The social worker is hoping for us to advertise this week, start interviewing mid-month, and have someone hired and all the paperwork done by the time the ABA training session comes around the first week in April. Just submitting all the job postings and reading through resumes is going to be so time consuming! And then there's the interviewing! I really hope we can get this done in time!
Tomorrow (Tuesday) morning we have an appointment with a physiotherapist (PT) who works with kids on the spectrum. I'm hoping she'll be able to give us some direction regarding Jesse's toe-walking. He walks on his toes much more now than he does flat-footed...even in boots! I'm so worried that he'll develop another contracture and require casting again. I do NOT want to deal with ortho again! (But I think that's a story for another day.) The physiotherapist should be able to tell us whether or not we need to get Occupational Therapy (OT) involved. After his appointment we'll be getting Jesse's bloodwork done. We'll be at the hospital anyways, so it's as good a time as any.
We should have a senior therapist assigned to us at some point this week, or early next week. This person will over-see Jesse's home therapy and his progress in general. She will be a sort of mentor/supervisor for Jesse's home therapist. She'll be coming to our home once a week for the next 3-4 weeks to assess Jesse's needs so that we can develop a treatment plan. I'm really anxious to meet this person. I really hope she'll be a good fit.
Monday coming Jesse will be seeing his new Speech Language Pathologist (SLP). She has a weekly 1/2 hour appointment available for Monday mornings at 8:30. I jumped at it, since Jesse is still wait-listed for the Children's Rehab SLP for another few months. I really need to check out our insurance, since I know speech therapy has limited coverage ($500 or $1000, I can't remember). At $60/appointment, we're going to run out quickly. But you gotta do what you gotta do, right?
March 17th we have an appointment with Dr. C. Steve wasn't with Jesse and I when we went for the ADOS, when Jesse was diagnosed. Since we expected Jesse to emerge from the ADOS with a clean bill of health, we felt that it wasn't necessary for Steve to take a day off work to attend the appointment with us. So this appointment with Dr. C will give Steve a chance to talk discuss this diagnosis with the doctor. It'll be good for me too, since I was too shell-shocked the last time to really comprehend what she was telling me.
And to top it all off, at some point we should be receiving appointments for audiology and clinical nutrition as well. And then there's the three day ABA training in April that Steve and I will be attending, along with our newly-hired home therapist (as long as we can find an afternoon sitter, that is).
Have I mentioned I also work 60 hours every two weeks?
At least I've found a way to keep track of everything. Google Calendar has been a God send. I've set it to E-mail me reminders of appointments 24 hours prior. I've also been able to share the calendar with my husband as well, so that he can access it anytime, anywhere, from his Google account. I highly recommend it if you have a crazy, busy schedule and poor time management skills!
I guess that's enough of an update for now. I need to get to bed. We have a busy day tomorrow!
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