Receptive Language

At last Monday's speech therapy appointment the SLP tested Jesse's receptive language. What she expected to take 2-3 sessions took all of 20 minutes. His attending was awesome! And it turns out that Jesse is right on target! He scored 50th percentile for 2 - 2 1/2 year olds. I'd always thought that his understanding was pretty normal, and now we know it is.

Amazed!!!

We had our weekly speech therapy appointment this morning. SLP was very impressed with Jesse's vocabulary growth over the past couple of weeks. In the two months since we started speech therapy, Jesse has gone from being about 14 months behind (12 month level at 26 months of age), to being just 4 months behind (24 month level at 28 months of age). I'm over the moon!!!

Put yer feet up....

...this is gonna be a long one!

Tomorrow is Jesse's Individual Support Services Plan (ISSP) meeting. It'll be here at the house, so I don't have to find a sitter (thank goodness). There will only be a few people in attendance - the Autism Program's social worker, Jesse's senior therapist (ST) and her supervisor, and myself. Jesse's SLP can't make it, but she emailed me a progress note. Steve can't make it either, since he's already at his max vacation time this year. He helped me write up our own contribution to the meeting anyways. It's basically just a sheet of paper with the heading "strengths" written on the left and "needs" written on the right. We came up with the following...

Strengths:
-non-verbal communication
-growing vocabulary
-will attempt new words
-imitation
-high energy
-great fine motor and gross motor skills
-likes to be around adults and other children
-transitions easily from one place to another and from one activity to another.

Needs:
-to work on increasing vocabulary and phrases
-to work on decreasing toe walking
-to work on interactive play with other children
-to work on not running away when out in public
-has difficulty breaking certain routines 

Jesse's SLPs progress note also listed some strengths and needs, none of which were a surprise to me. It was very encouraging though, that she seems so pleased with his progress thus far. It will be interesting to hear what his ST and her supervisor have to say at the meeting tomorrow.

I'm also really looking forward to this, because the funding for Jesse's home therapy program will be approved. We'll actually be able to pay whoever (whomever?) we hire to be Jesse's home therapist!

Speaking of which, we have an interview set up for Wednesday night! I'm very nervous about interviewing someone. I've never really done that before, aside from sitters for Jesse. I suppose this shouldn't be that different though. I definitely need to prepare for it though! I also have to go through the rest of the resumes and try to find a few more candidates to interview. I'm thinking 5-6 interviews should be sufficient. I really want to find someone who's high energy, friendly, creative, and dependable.

Also, I figured now would be as good a time as any to share an update on Jesse's vocabulary. It's growing so much! It's very difficult to keep up with now too, since he'll at least try to imitate almost any word you ask him to say.

Imitated/prompted words:
Koko (the daycare owner's dog)
ears
hair
knees
toes
on
out
boots
shoes
go ("doe")
duck
gone ("don")
ball
arm
god
mouse
purse
pee
cheese

Spontaneous Words:
Mom
Da/Dad
Nan
Pop
Josh ("Dosh")
Jesse ("esseez")
Anna ("Nana" - daycare owner's daughter)
no
this
up
nose
baby
hi
bye
juice ("dooce")
bees (refers to nursing)
boo
uh-oh
off
eyes
poop ("doot")
hot
beep
more ("no")
ta-da
night-night
hop
ding-dong ("ning-nong")

Jesse also has a handful of two-word phrases now too, including "bye bees/Mom/Dad/Nan/Pop/Josh," "my baby," "no, Jesse's!" and "uh oh Da!"

It's quite a bit better than the list from March 11th, which was the last time I did this. And so, so much better than the 5 words he was using when we had our first speech therapy appointment with his current SLP on March 8th. That was only 6 weeks ago! His non-verbal communication has also come a long way since then, which is very helpful. He's much better able to communicate with us what he wants (to eat, for example) and when he wants us to play with him.

There's so much more to tell, but it's getting late and we have an early rise tomorrow. Speech therapy is at 8:30 and the ISSP is at 10 am! Hopefully I'll get a chance to update tomorrow.

"My Baby!"

Yes, this is what Jesse said today. I'm adding it to his list of two-word phrases, which, until today, has consisted only of "bye [insert noun]." He says "bye bees," "bye Mom" (I nearly fell on the floor when he said that to me when I dropped him off at day care last week), and "bye Da/Josh/Nan/Pop."

This sweet little phrase turned my otherwise crappy afternoon into pure awesomeness. We were meeting with Miss Crabby-Ass insurance adjuster when he said it. I had just taken him out of the room because he was getting loud. I was holding his baby doll (which was MY baby doll 29 years ago) and he reached out and said "my baby!" Clear as day. He hasn't said it since, but I'm hoping to hear it again soon.

In other news, we reached a deal with the other guy's insurance agency. They're giving us a grand total of $1000 for our car, but we get to keep the car and scrap her. (They're paying to replace the car seat as well.) We also found a new(ish) car to replace Steve's 1999 Sonata. It's another Sonata. A 2006 model. Steve is quite pleased that for once his car will be newer than mine (by about 5 months). We get to pick her up tomorrow. I was so worried that we wouldn't have found another car by the time Steve goes back to work next week. (He's on holidays this week for the ABA training.) We need two cars since Steve works about 30 minutes outside of town and Jesse has his speech therapy and various other appointments during the week that I need to take him to.

So that's a couple of things that are now out of the way.

Tomorrow Steve and I start the ABA training. We had hoped to be doing this with our newly hired home therapist, but we haven't even gotten around to looking at the resumes yet. We'll probably be starting that task tomorrow night or Wednesday night. The ISSP is tentatively scheduled for April 19th. Only then will funding be approved to pay our home therapist, so I don't feel too behind.

Oh, and we're also going gluten free (GF) this week. I just need to pick up some foods to get us through the first week or so while we learn how to incorporate non-gluten containing foods into our diet. I'll definitely write more on this later. Oh, and my book report. I'll have to work that in too. Damn, I'm such a procrastinator!

Now we're getting somewhere

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.

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!

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!

"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. :)

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?

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:

New Words!

So, in the past few days Jesse has learned two new words! He now says "baby" and "no." It's so adorable when he says "baby" and not quite so adorable when he says "no" but I'll take it anyways.

I know this isn't they typical brag of a mama of a two-year-old, but language has been a HUGE challenge for Jesse. Jesse had about 10-12 words by his first birthday. Then, between the ages of 13 and 15 months, he lost all but a couple of them. A couple of times he'd say a new word and then never say it again. At my cousin's wedding last August, Jesse said "dancing" twice (in context!) but then never said it again. He also said "kisses" around the same time, but hasn't since. This past Christmas while my parents were visiting Jesse went from saying around 5 words to about 10, but then lost them again after they left.

This pattern of language growth and regression was the big sign that tipped me off about 10 months ago that something just wasn't right. Of course everyone assured me that Jesse was just a mover, not a talker and that a lot of boys talk later. Our family doctor sent the referral to the development team at the Janeway just to reassure me. But then other issues were being dealt with (particularly Jesse's heel cord contracture) and the speech thing was no longer our number one concern. We DID get in to see a private speech therapist (the wait for one of the Janeway's speech therapist is about 14 months...we're still waiting) and she did an assessment and gave me a bunch of suggestions on how to help encourage language development. But they didn't help. For the longest time I felt like I wasn't doing it right or talking to him enough or I was doing something wrong. I still feel that way a lot of the time, but at least now I KNOW that there's something going on other than just a speech delay. And I know that I don't have the knowledge or skills to deal with it on my own.

Pretty soon Jesse will be getting consistent, intensive in-home therapy to help him learn to talk and to work on his other issues. For right now though, I'm going to celebrate these new words and hope they don't disappear. 

Sinking in

Is it sinking in yet? Maybe. Or maybe I'm just too numb to deny it. I think this whole thing is complicated by the fact that Jesse seems so happy and normal. I mean, to anyone who is unaware of Jesse's diagnosis, Jesse is just a normal little boy. Sure, they'd probably pick up on the language issue, but other than that....clueless. I mean, that was ME prior to yesterday. And now I'm noticing things. Things that should have made this less of a shock. The toe walking is happening a lot more than I noticed. The echolalia.

And then there's the fact that this diagnosis explains almost everything we've been through with Jesse since he was 6 months old. The food intolerances (not explained by allergies) and gastrointestinal issues, the sleep issues, the heel cord contracture (which the physiotherapist felt was related to a sensory issue), and the speech problems (delay and regression). Why did I not put this all together before?

I guess it's all moot anyways. The past doesn't exactly matter very much now. We have to figure out where to go from here. I guess we'll be getting a call from the social worker soon. And I placed a $150 Amazon.ca order today for around 10 different books on autism. Maybe by the time they get here I'll be prepared to start reading them.