Playing catch-up

I've been slacking on this blog. Big time. So I'm going to give some brief up-dates of a few things we've been up to.

ISSP
From the ISSP meeting we came up with the following three major goals:
1. To increase expressive vocabulary to 100+ words. To be implemented by family, home therapist (HT), and senior therapist (ST) in the home environment. To be reviewed October 2010.
2. Jesse will navigate his environment using heel-toe pattern. To be implemented by family, HT, and ST in the home and in the community. To be reviewed October 2010.
3. Jesse will understand and follow one and two step commands regarding safety. To be implemented by the family, HT, and ST in the home and in the community. To be reviewed October 2010.

As of now though, I think Jesse has likely already met goal #1. His vocabulary has just exploded. Jesse's SLP has told us that we're not going to be able to keep up with writing down his new words. And it's true! I'm going to try though. Probably tonight at work. I'd like to have a better idea of exactly how many words he does have. I suspect though, that it is around 100 words. Jesse's already come a long way in terms of meeting goal number 3 as well. I can actually hold his hand in parking lots now, whereas I used to have to carry him. He's much more compliant about important things, like holding my hand, and not running off. I'm still cautious, of course, and hold his hand tightly, but it so much better.

I think that the most difficult goal to meet is going to be #2 - dealing with the toe-walking. We have activities and exercises in play to encourage heel-toe walking, but so far, he goes straight back to toe-walking. I'm hopeful, but not convinced, that this goal will be met by October.


Home Therapy

Our HT is working out really well thus far. She's here from 8 am to 12 noon Monday - Friday. Jesse really seems to like her, and she's really patient with him. He's even saying her name. The therapy is going well and Jesse is mastering his programs without much trouble at all. He's working on puzzles, letters, matching, body parts, animal sounds (he knows a ton!!), prepositions, and following instructions.

My only concern with the home therapy, and it's a big one, is that the ST and her mentor seem to be very reluctant to move Jesse's therapy outside. The weather's getting nicer, and I don't want Jesse stuck inside this summer. Yes, his therapy is only in the morning, but Jesse naps for 2-3 hours every afternoon. That leaves little time for getting out and about. So right now I'm trying to come up with ways of doing his home therapy outside the home. I need to do some research on this over the weekend.


Chiropractor

We've decided to start taking Jesse to the same chiropractic clinic Steve and I use. One of the chiropractors there works with kids with developmental issues. She's trained in Brain Gym. We had our first appointment yesterday. She did a physical assessment and asked me lots of questions about Jesse and his development. It was interesting to say the least. She does think that she can help with the toe-walking and the w-sitting. She wants to do some craniosacral work, and possibly do some adjustments as well. She assured us that adjustments in kids are nothing like adjustments in adults. I was very happy with how calm and respectful she was. She told Jesse everything she was going to do, and adjusted her assessment and treatment to suit Jesse's desire to be up and about and active. Some of what she does seems very strange (which she warned me of!) but I'm not going to discount it unless I see that it's not helping. I can't say that I understand chiropractic care very much, but I do know that it works for me, so I'm willing to give it chance to help Jesse.


And last, but not least, we took Jesse to feed the ducks at the park on May 24th. He had a blast! Here's a video. You can here him asking for "more" bird seed. Don't mind my voice.

Just a quick update

We had our Individual Support Services Plan (ISSP) meeting this week. In attendance were the social worker, Jesse's senior therapist, her mentor, and myself. Jesse's SLP sent along a progress report to be included as well. We discussed Jesse's strengths and needs, and picked three main areas to work on in the coming six months. I should have a copy of the formal report on Monday, so I can go into more detail then. We also reviewed and signed the service funding agreement, which will pay for the home therapist that will be working with Jesse.

Speaking of which, we're finally on the ball with regard to hiring someone. We've interviewed one person already, and it went REALLY well. The only issue is that she's looking for the full 30 hours per week (as it's her income and all) and we were hoping to find someone part-time. It's an option though. We have two more interviews lined up in the coming few days. Hopefully we'll have a decision made by Wednesday and can get everything lined up for home therapy to start the week after next.

Also, I received and invited to attend a program called "Making Connections in Autism" at the Janeway. It's a program of four education sessions for parents, caregivers, and therapists of children with autism - in particular those who have been waitlisted for SLP and OT services. It's taking place over 4 weeks in May. I've already notified them that I will be attending. I'm hoping our home therapist (if we have one hired by that time) will be able to attend as well. My fingers are crossed that this will give me some ideas for how to break Jesse of his toe-walking.

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.

Denial

It's so devious, isn't it? Everything's going well and so it creeps in and you start thinking, "they have to be wrong." Jesse had his assessments yesterday by the senior therapist (ST) and her supervisor yesterday. It went so well! He was so compliant with the testing (which mostly just resembled structured play) and was so interactive. ST and her supervisor were really pleased with how things went and how easy it was to work with him. He seemed so normal. I mean, really normal! There were things that he couldn't do, of course, like identify colours, and he did have trouble with one of the matching games, but so would neurotypical 2 year olds, I would think. So all day yesterday I kept thinking that they must have made a mistake when they decided Jesse has autism.

Then last night he started spinning. And he's been doing it today as well.

I guess it's a good think his ISSP is next week.

"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.