We're in business!

We've FINALLY hired a home therapist for Jesse! Yay! I won't use her name here unless and until she gives me permission, so for now I'll call her HT. We interviewed 3 people for the position. Any one of them would have been wonderful, I believe. It was a really hard decision to make. But there was just something about HT, and this position working for our family fits perfectly with her schedule. Her references all gave glowing recommendations. She starts working with us on Monday. It's a great day to start too! She'll come to Jesse's 8:30 a.m. speech therapy session, then get to meet Jesse's senior therapist (ST) and her mentor. Then in the late afternoon she can go with me to the "Making Connections in Autism" program offered at the Janeway.

I'm actually getting kind of excited about this. I think that this will be great for Jesse. He's been making great strides already these past 2 months. So this is probably just going to help him all that much more.

I still have to post about Jesse's ISSP meeting. I do have the report from that now. I have a 4 day weekend coming up, so I'll try posting it then.

G'nite!

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.

Look how far we've come, baby!

At Jesse's first speech therapy appt on March 8th (about 6 weeks ago) Jesse had 5 functional words. A simple conversation wasn't even a possibility. And now it's a reality. Last night when I was at work, Jesse didn't want to go to sleep for Steve, so they called me up and I talked to my boy. 

Me: Hi Jesse
Jesse: Hiiiiii!
Me: Are you being a good boy for Daddy?
Jesse: Umhmm
Me: Can you blow Mommy kisses?
Jesse: Mwah!
Me: I love you baby. Now give the phone back to Daddy.
Jesse: Bye Mom.

I'm feeling kinda optimistic. 

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 travels around the blogosphere

I have such a difficult time verbalising to others just how life changing an ASD diagnosis is for a family. This blog post does a much better job than I seem to be able to do.

While I may often seem like I am stuck in that moment in time where the entire world came crashing down around us, there are moments of hope breaking through. Jesse gives us hope every single day. This is a process. And I just ask those that care about us to not rush us. Let us work through this in our own time.

Operation OT

I'm on the hunt for a private Occupational Therapist (OT) for Jesse. He's finally on the list for the Janeway OT, but the wait is 18 months long. So, private it is! Well, it's not really as easy as that. According to the NLAOT, there is only ONE private therapist who specializes in pediatric learning and development. I called and apparently she is VERY part-time. She may not even be taking new patients. I should be hearing back from them within a few days.

So frustrating.

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.