Tuesday, January 27, 2009

Music for Max.

Over the past few weeks, Max has been a busy little guy. It has been stressful for all of us, as he tends to act out when his world is turned upside down (don't we all?). Last week he started music/speech therapy, IBI, had a checkup at Sick Kids on his kidney, and a paediatrician appointment. That's a lot, even for a normally developing kid - it is no wonder that Max was left unimpressed.
At Max's first music/speech therapy session, he really struggled. He did not want to stay seated or participate - all he wanted to do was run around the room and tug on the door handle to try to escape. When I tried to bring him back to the circle, he screamed and thrashed about, which was exhausting for both of us. Luckily, the therapists - Sandy Lane and Lauren Murray, have pretty much seen it all, so this didn't stress them out. About half way through the session, we got him settled down and he was able to sit and observe, participating at a minimal level.
Given that we had a rough start with the first session, I was a bit stressed out as we headed into our second session. Max was whimpering as we entered Blue Balloon, and gave me a wary look as I coaxed him into the music room. But, to my surprise, he settled in immediately and managed to stay engaged for the entire 50 minute session! I think Sandy and Lauren are growing on him, and he seems to be starting to understand how the program works.

What I really like about the music/speech therapy, is Max's speech therapist, Sandy, designed the program for Max and the other little boy (named George) to meet their goals specifically. Max and George were both born in April 2006, have a diagnosis of ASD, and are at similar levels of development. By having them share the sessions, they also get the benefit of learning to engage with another child. Sandy also managed to find another little boy with similar goals (born in April 2006) to join our group, which brought the cost down. With the mounting costs of Max's therapy, I certainly appreciated that!

Over the next few months, Max will be in therapy 5 days a week. That is what he needs right now, so that is what we will do. While we can't afford the recommended 21 hours of IBI therapy a week (nor do I think Max could handle it), we are starting with 6 hours a week, plus music therapy. He also starts up another block of speech therapy at ErinOakKids in February. Luckily, he will have the lovely Emily as his speech therapist again, so he won't have to start all over and get used to someone new. I'm not sure how we'll manage all the to-ing and fro-ing once my mat leave ends and I am back to "work" in May, but we'll cross that bridge when we come to it.

Friday, January 23, 2009

Letter to My MPP, Kevin Flynn.

Dear Mr. Flynn,

I am writing to you via email in hopes that you will respond to me to discuss an issue that is of a very urgent nature. My son, Max, was diagnosed with Autism in December. He is only 2.5 years old. Max is a wonderful little boy (as you can see from his picture), and we are doing everything we can to get him treatment. The main course of treatment for children on the Autistic spectrum is IBI therapy (Intensive Behaviour Intervention) and the key years for the therapy to be most effective are between the ages of 2 and 5. The recommended number of hours per week is a minimum of 21 hours. At $45 per hour, plus program planning, this therapy costs $1000 a week. As I am sure you can understand, this is simply not feasible for the majority of Canadian families, mine included.
To understand Max's condition, you would need to meet him. I would like to invite you to our home to introduce you to our son, the light of our lives. Max is not able to speak, except for a handful of words that come and go (he is not able to consistently retain language). This inability to communicate is very frustrating for him and for us as it makes it difficult to meet his needs. He often falls and hurts himself because he is not able to relate to his surroundings, and he rocks back and forth and hits his head to cope with stress. He is not able to relate to other children, and has meltdowns and tantrums when his routine is disrupted. Max is not able to sleep throughout the night without waking and getting very upset. Episodes last up to 2 hours. We have to monitor Max every minute of every day to ensure the he does not hurt himself, and to assist him in every task that he undertakes (be that "play", getting dressed, or eating).

The current wait list to receive support from ErinOakKids is currently at 24-36 months. This is unacceptable. If IBI services do not receive a drastic increase in funding, Max will miss the key period for intervention altogether. I implore you to assist us in getting funding for Max. The quality of his life depends on it. Funding for him now would in fact be significantly less than the ongoing funding he will need throughout his entire life should he not receive this vital treatment now.

Please contact me as soon as possible to discuss this matter.

thank you,

Katrina C.

Monday, January 12, 2009

Max Update.

I realized the other day that the last post I put up seemed...well...I was exhausted, so what can I say? I am happy to report that we are doing much better in the sleep department here in the Fickle Feline household. My email friend Julie (of Mabel's Labels) was kind enough to tip me off to the fact that many kids with ASD do not produce enough melatonin so they have problems sleeping and staying asleep. I checked with some other mom's of kids with ASD and low and behold, yes, this is something they all of them are either using or have tried.

It would seem that this was the very thing dear Max needed to help him to sleep. We are experimenting with the dose and trying to see what works best for him. The interesting thing is that he is now falling asleep much faster and staying asleep, so he is waking up MUCH earlier and in a better mood overall. We like that he is staying asleep, and we are adjusting to the earlier wake time. I am also trying to get Cam used to sleeping more in her crib so that I can get a better rest.

Max is starting IBI therapy this week, and will have his second session with this new speech therapist. We are also getting him started with a new occupational therapist, so he will be one busy little dude. I am really excited about these new therapists and I am looking forward to reporting more progress for the little dude.

Friday, January 02, 2009

Time For Sleep.

Time for sleep. Indeed. One of the challenges we are currently dealing with is that Max's sleeping is hit and miss. He typically sleeps through the night, but as I've mentioned previously, when his schedule is off (as it has been during the holidays) or he isn't feeling well, he tends to have a hard time going to sleep and staying asleep.

As he gets bigger and stronger, this poses more and more of a problem. He is now in a regular twin bed (with a padded headboard and safety rails on both sides, and a body pillow across the bottom). His room is very safe - the only furniture in it is his bed and a dresser (that he can't tip). He has a bead toy and a musical/light carousel toy, and his books to keep him entertained, but that is it. Once he is in his room, he is there to stay, and he is not able to open the door from the inside because of the child safety knob.

While we know he is safe, it is still very hard to deal with what I call "episodes" when they occur in the middle of the night. He basically starts shrieking at the top of his lungs, and alternates banging on the door with throwing his body into the door (makes a great big loud sound because the door is wood and hollow to boot). When we go in to check on him, he is fine - all smiles, in fact. It seems that all he wants is attention, and perhaps to party.

After consulting with a Behaviour Therapist about the situation, we learned that

a) we have to be consistent with how we respond
b) we are not to let him out of his room (assuming he is fine and not sick)
c) we are not to take him downstairs to watch TV

If we break any of the rules, we are basically starting the re-training all over again the next time he has an episode, because he has learned that his behaviour will get him what he wants (which is out of his room and downstairs). The kicker is that Max can stay up all night with no problem if we do let him out - which leaves all of us exhausted the next day. So, as much as it kills me to do it, I have to leave him in his room and let him "work it out". Some nights this behaviour lasts 20 minutes, other nights it lasts 2.5 hours. Last night was a 2.5 hour night, and at one point I thought I would literally go outside and lay down in the snow, because that would be somehow better than sitting listening to my son wail in misery. I did check on him once to make sure he was okay, I brought him some milk and showed him the "time to sleep" visual we use to communicate to him that he needs to got to sleep. Neither worked, but at least I tried.

Today I am spent, both emotionally and physically, and have said a few little prayers to the Goddess of Sleep that Max is able to make it through the night tonight without waking up the entire house. If you could put in a good word for us with whoever it is you believe in, I would truly appreciate it.