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.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Friday, April 23, 2010
Tuesday, March 30, 2010
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.
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.
Friday, February 12, 2010
The Assessment
We received a copy of Jesse's assessment in the mail a couple of days ago. It really helped me understand what Dr. Crosbie had been trying to explain to me last week in the office, when I was too stunned to think. I still have a lot of questions, of course. Hopefully many of those will be answered by the social worker next week and by Dr. Crosbie herself when Steve and I meet with her to discuss Jesse's case.
I've been debating on whether or not to post some of the assessment online. I wasn't sure I wanted that info out there for the world to see. But then, today, I took Jesse to McDonald's to play in the playroom while I had a cup of coffee. A father and his young son sat next to us while I was getting Jesse ready to leave. He asked me how old my son was and I told him Jesse had just turned two. Then he asked me if he was talking much. I said, "no." (We get these comments nearly daily, since Jesse is usually really quiet in public.) And then he said, "Yeah, my little guy will be three in August and he doesn't say much either. They say it's a boy thing." I didn't know what to say. Should I have told him about Jesse? I really didn't know what to do. What made it even worse was that this little guy reminded me very much of a family member who also has Autism Spectrum Disorder. If I said anything, would it have upset them? I really don't know.
So this is the big reason why I'm posting this. In case anyone out there has concerns about their child but has had it beat into their head that their child is "fine." The lesser, but still important reason, is that I'm getting tired of the "you're crazy" or "don't be silly" reactions whenever I've mentioned something being "not right" with Jesse (even though I, myself thought that it was just a speech issue). Maybe this will help people see why I've been concerned. I'll skip through a lot of it and focus on the actual assessment part of it. This was written by Dr. Crosbie but I've added my own notes in italics, to clarify and/or elaborate. Here goes:
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I've been debating on whether or not to post some of the assessment online. I wasn't sure I wanted that info out there for the world to see. But then, today, I took Jesse to McDonald's to play in the playroom while I had a cup of coffee. A father and his young son sat next to us while I was getting Jesse ready to leave. He asked me how old my son was and I told him Jesse had just turned two. Then he asked me if he was talking much. I said, "no." (We get these comments nearly daily, since Jesse is usually really quiet in public.) And then he said, "Yeah, my little guy will be three in August and he doesn't say much either. They say it's a boy thing." I didn't know what to say. Should I have told him about Jesse? I really didn't know what to do. What made it even worse was that this little guy reminded me very much of a family member who also has Autism Spectrum Disorder. If I said anything, would it have upset them? I really don't know.
So this is the big reason why I'm posting this. In case anyone out there has concerns about their child but has had it beat into their head that their child is "fine." The lesser, but still important reason, is that I'm getting tired of the "you're crazy" or "don't be silly" reactions whenever I've mentioned something being "not right" with Jesse (even though I, myself thought that it was just a speech issue). Maybe this will help people see why I've been concerned. I'll skip through a lot of it and focus on the actual assessment part of it. This was written by Dr. Crosbie but I've added my own notes in italics, to clarify and/or elaborate. Here goes:
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Jesse Snow is a young man reviewed through the Development and Rehabilitation Division as an urgent pediatric consult on December 7, 2009. (I didn't realize that a ten month wait was still considered an "urgent pediatric consult." Can't say I'm surprised though.) At that time presentation was characterized by a loss of speech. He had 9-10 words at 10-13 months of age and subsequently lost them. There were concerns with respect to motor delay but he did have a tight heel cord with contracture on the right foot and [had been] serially casted. (I just want to note here that Jesse's prior toe-walking was labelled "idiopathic", even though his wonderfully perceptive physiotherapist had mentioned that suspected it was a sensory issue. We're now dealing with this being an issue again, as he toe-walks more than he walks flat-footed.)
Family history is positive for....Autistic Spectrum Disorder....(I'm not comfortable giving more info than that, since it's not my (or my child's) medical history.)
Parents have been less and less concerned about Austistic Spectrum Disorder as time has gone on. (In very large part due to everyone and their dog telling me Jesse couldn't possibly have autism.) Jesse is being followed by Speech-Language Pathologist, M.S., who felt primarily his language was behind. (He hasn't been seen by her since last summer.)
At the age of 23 months words included mom, dad, hi, Jess, sometimes boots (and boobies)....
Parents note response to name is variable however he understands everything that is said. During the course of the office appointment he was making tea, pouring, stirring, and giving cups of tea. No repetitive play was noted. There was no unusual television shows watched. He eats a variety of food, continues to drink from a sippy cup, and is breastfed 2-3 times a day.Some early imaginary play was noted in the office. There is some contact with other children at playdates and a play group....
Sleep is generally non-problematic. (Is not *now* but was for 18 months of his life!) He previously hand flapped but this has extinguished. There was no hand gazing or finger gazing noted....
Abbreviated physical examination revealed a long lean child....Neurologically he appeared to be intact....
Given the concerns around language regression and some of the inconsistent response to name decision was made to proceed to complete an Autism Diagnostic observation Schedule (ADOS) Module 1. This was complete on February 1, 2010.
Jesse participated quite readily in all items on teh ADOS. The ADOS was administered by C.P., Occupational Therapist with assistance from D.S., Speech-Language Pathologist. At the time of assessment, Jesse was 2 years, 3 weeks of age.
While Jesse did perform many nice communication attempts throughout the assessment it was overall felt that his use of eye contact and social interaction were not typical for his age.
The scoring of the ADOS is divided into a communication and reciprocal/social interaction domain. The communication domain is looking at the frequency of vocalizations, use of stereotypic language, use of other bodies to communicate, pointing to point out things of interest as well as to get help, as well as gestures. Jesse obtained a score of 2 in communication which is at the autism spectrum cut off score. Reciprocal interaction is exploring eye contact, direction of facial expression, shared enjoyment and interaction, showing behaviour, joint referencing, response to joint attention, and quality of social overtures. His score of 8 in social interaction is just above the autism cut off of 7. His combined score of 10 is just above the autism spectrum cut off of 7 but below the autism cut off score of 12.
Overall it was felt, given the history as well as the curerent presentation, that the appropriate diagnostic label would be one of Pervasive Developmental Disorder Not Otherwise Specified. This is an Autistic Spectrum Disorder. This makes Jesse eligible for the Provincial Autism Intervention Program....
It needs to be stressed that Jesse is making quite rapid gains. (I'm not arguing, but I'm not sure what she was referring to here.) It is anticipated that involvement with the Autism Intervention Program can only serve to speed this up. My plan would be to repeat an ADOS when he is 3 years of age and review the need for ongoing programming....
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Wednesday, February 3, 2010
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.
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.
Tuesday, February 2, 2010
Day One
There are certain days and events that will be forever burned in your memory. The sights, the sounds, the smells.... Even though I've been around for going on thirty years, I don't have many of these days. Getting my high school diploma, walking down the aisle, getting my first positive pregnancy test, suffering a miscarriage, and the birth of my son Jesse comprise my list.
And then today happened. My beautiful, perfect little boy was diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified.
What does it mean? I'm not entirely sure. I do know that PDD-NOS is an autism spectrum disorder and that it scares the shit out of me. I've been avoiding google, because I'm not quite ready to dive into this just yet. I'm still adjusting to the shock of it all.
Jesse is the most wonderful little boy. He's incredibly loving - very generous with kisses and hugs. He flirts with pretty girls and ladies. He's very gentle around other children and adores older kids. He's incredibly smart (I know all parents say that about their kids, but other people have noticed this too). So how did Jesse end up with a diagnosis of PDD-NOS? I'll give you the long version later, but the short version, is that speech issues led us to an appointment with the developmental team neurologist, Dr. Crosby, who assured us that Jesse was almost certain a perfectly healthy normal little boy. But she suggested a team assessment just to completely rule out anything else. So we went to Jesse's appointment with the developmental team today fully expecting them to say to us, "What are you doing here? Your kid is fine." That didn't happen. After going over the assessment with the other team members (occupational therapist, speech language pathologist, psychologist?) Dr. Crosby met with us. In under two minutes my head was swirling with information that I was just failing to comprehend. "Autism spectrum", "Pervasive Developmental Disorder," "Social worker", "lead therapist", "therapy program".........
In a matter of minutes, our whole world turned upside down. Nothing has really changed. I mean, Jesse is the same child he was yesterday. Still the same happy, loving, wonderful child he was yesterday. Right now I have to remind myself of that constantly. But everything else has changed. Yesterday I was planning on starting a new business venture that would, hopefully, in the future, allow me to reduce my hours away from home. We've been planning to grow our family. Both of those are on hold indefinitely now. I have so much to do and learn. I have to help Jesse get better. I don't want my little boy to have to deal with a world that views him as "damaged." I just feel so ill-equipped to do this.
And then today happened. My beautiful, perfect little boy was diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified.
What does it mean? I'm not entirely sure. I do know that PDD-NOS is an autism spectrum disorder and that it scares the shit out of me. I've been avoiding google, because I'm not quite ready to dive into this just yet. I'm still adjusting to the shock of it all.
Jesse is the most wonderful little boy. He's incredibly loving - very generous with kisses and hugs. He flirts with pretty girls and ladies. He's very gentle around other children and adores older kids. He's incredibly smart (I know all parents say that about their kids, but other people have noticed this too). So how did Jesse end up with a diagnosis of PDD-NOS? I'll give you the long version later, but the short version, is that speech issues led us to an appointment with the developmental team neurologist, Dr. Crosby, who assured us that Jesse was almost certain a perfectly healthy normal little boy. But she suggested a team assessment just to completely rule out anything else. So we went to Jesse's appointment with the developmental team today fully expecting them to say to us, "What are you doing here? Your kid is fine." That didn't happen. After going over the assessment with the other team members (occupational therapist, speech language pathologist, psychologist?) Dr. Crosby met with us. In under two minutes my head was swirling with information that I was just failing to comprehend. "Autism spectrum", "Pervasive Developmental Disorder," "Social worker", "lead therapist", "therapy program".........
In a matter of minutes, our whole world turned upside down. Nothing has really changed. I mean, Jesse is the same child he was yesterday. Still the same happy, loving, wonderful child he was yesterday. Right now I have to remind myself of that constantly. But everything else has changed. Yesterday I was planning on starting a new business venture that would, hopefully, in the future, allow me to reduce my hours away from home. We've been planning to grow our family. Both of those are on hold indefinitely now. I have so much to do and learn. I have to help Jesse get better. I don't want my little boy to have to deal with a world that views him as "damaged." I just feel so ill-equipped to do this.
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