A Bus Ride, Riding lessons, and a bit of Frustration for Mommy

Today at 1:30 a strange sight could be seen on our driveway camera. Jake and I have often watched the cars and the schoolbusses go by on our camera (installed because we have no windows on that side of the house), but this time there was a bus. A STOPPED bus. A stopped SCHOOL BUS! I told Jake to look and he ran to the TV breathlessly saying "Schoolbus! Schoolbus!" I already had him dressed and in shoes and had Manny on my back in the carrier, so I said "Lets go see it!" I thought he might trip over himself getting to the door. We jogged down the driveway and Jake was simply delighted to see the bus door open and nice ladies inside waving at him. They were equally delighted to see Jake so excited that he had to stop every few feet to flap and squeal and jump up and down. He climbed right on the bus and hopped into a seat and clapped his hands and exclaimed "Yaaaaaaay!"

After I spoke to the bus driver and her aide while Jake tried out different seats, I asked if they would take him for a ride. They were happy to, and I decided to stay and let him go by himself. I didn't want him to get the idea that Mommy rode the bus with him. They drove around the block and he returned just as happy as he had been when he left. We discussed his schedule (they will pick him up at 7:30AM on Monday morning and drop him off around 11:00 AM) and I led a reluctant Jake off of the bus. He waved to the bus and drivers all the way up the driveway, as it turned the corner, and until it was completely out of sight. I think that the bus is a definite go. I wish I had pictures, but I do not. Maybe there'll be more of his first day of school.

After reading Temple Grandin's book and seeing her speak of how wonderfully children with autism do when exposed to horses, I decided that Jake would probably benifit from being around them. I love horses and I love to ride, and after watching Jake sit so calmly during a pony ride, I started looking around. I contacted Storybook Farm and Equine Rescue which is just a couple of minutes from our home. Crystal, the owner of the farm, agreed to meet with us this afternoon. Jake loved the farm where there are pigs, ponies, chickens, cats, donkeys and of course, lots of horses. Crystal and I worked out a trade. I will groom her three farm dogs monthly, and she will give Jake a half-hour riding lesson every Friday at 3 PM. He will be riding Redwho we met today. Red is a beautiful horse.

Jake is aquiring quite the weekly schedule. School on Monday and Thursday, OT on Thursdays after school, Riding lessons on Friday and Speech on Saturday. Not to mention the activities that I'll manage to come up with on off days. It may seem like a lot for a 3 year old, but it sure beats watching him lay in the floor and stim. It also takes some of the pressure off of me to figure out activities every single day with only me. I think it will help a lot.

And as for the frustration....

Today Dr. Causo's office(the developmental pediatrician) called to remind me of an apointment that Jake has tomorrow. I had no idea. I was quite confused. I told the receptionist that we hadn't had any of the testing done and that Dr. Michaels had told me it would be at least 4 weeks before he got the report from Dr. Causo and that I should call him by the end of the month. "You haven't done anything?" she asked. Ugh. She checked and told me that the report had been mailed to Dr. Michaels on September 6th. Double Ugh! I cancelled tomorrow's appointment and rescheduled for their next closest appointment which is October 22nd. I called Dr. Michael's office and made an appointment for this Friday at 11:30 for a consultation. I am a bit frustrated that things have been delayed for yet another month. I have a lot of questions. One of which is about Jake's toenails, which have always been flat and thin, have begun to look worse and even concave. I worry that this is a sign of something related to nutrition or metabolism... or somethine else weird. Anyway, I can ask him on Friday. I am ready to get some of these things off of my mind so that we can move forward.

So it was a great day if you are a three year old.. school buses, horses. And a long and tiresome day for Mommy. At least we're getting somewhere!

Special Education Department Results Meeting

The meeting went pretty well. Steve and both boys went with us. I have on my desk a giant report that is mostly a summary of things I have told them or that they tested themselves. I will hit the high points.

(a number with a % means the 'th percentile and a number that says, for example 1-8 means that jake is functioning on the level of a child who is 1 year and 8 months)

Cognition:
"Jake's performance on the BDI-2 yielded a Cognitive standard score...which falls at the 2nd percentile when compared to same age peers."

Attention and memory: 1% 1-8
Reasoning and Academic skills: 9% 2-0
Perception and concepts: 1% 2-2

Communication:
"...first percentile... The results from the [tests] indicate that Jake has significant language delays."

Receptive: <1% 1-11
Expressive: 1% 2-1

Motor Skills:
"...42nd Percentile" Jake's gross and fine motor skills were OK, and his perceptual motor skills are exceptional, rating in the 5 year old range and >99 percentile.

Adaptive Behavior:
"The results indicate that Jake's adaptive behavior or daily living skills are adequate at this time."

Social/Emotional:
"Parent ratings on the [test] yielded a social-emotional score.... equivalent of 2 years 1 month. The ratings on the [test] yielded a socialization domain standard... which falls in the 13th percentile. These results indicate that Jake's social development is somewhat below average."

Autism:
Jake was seen to have some autistic traits, and the test showed a "most likely autistic" rating, however the school system doesn't officially diagnose, so I guess its just another indicator.

From the summary:
"Results of the present evaluation suggest that Jake is currently functioning below expectancy in the areas of social skills and communication. Cognitive scores are inconsistent... Jake appears to have splinter skills and some gaps in cognitive development at this time. Adaptive skills appear to be within age appropriate limits. Overall, motor skills appear age appropriate, while perceptual motor skills appear to be exceptional.... At this time Jake demonstrates significant delays in the area of communication and social skills. It appears that jake will need additional instruction prior to kindergarten in order to learn effective ways to communicate with others, learn various age appropriate concepts, develop more appropriate social skills, and increase interaction with peers."


So, there it is. I don't really feel any different after this evaluation. It all seems to be things we already knew, just written down in a harder-to-understand and more official sounding format. The good news is that Jake does qualify for services through the school system special education department.

What does that mean? Well, for one thing, Jake will begin school on Monday! Kathy H, the preschool teacher, one of the people we met with, and also a childhood friend of mine, has room in her class. He will be attending on Mondays and Thursdays from 8AM until 10:30. I am hopeful about this because when we pulled up to the pioneer headstart building, Jake began flapping wildly, giggling and saying "School! School!" I guess I called it "school" when we went there for the assessment. He loves the rooms and played on the playground with Daddy and Manny while I finished up in the meeting and was reluctant to leave.

I realize that Jake will be in a class with other delayed and disabled children, and while I feel like he could benefit from being in an integrated program I realize that A) there is no such option available right now and B) I would rather him be in a class with all delayed children with a teacher who is trained to deal with kids like him than for him to be in an all-typical preschool program with a teacher with no experience with special needs children. Ms. Kathy also says that they have tons of flexibility when it comes to catering to each individual child's needs, and says that they will expose Jake to the typically developing children in the headstart class that is in the same building, both on the playground and in group activities. Jake will be given speech therapy there at the school by Amber (my cousin, who could not join us today) and any other services that he needs. I think this is a great stepping off point. I am still terrified that he will not like it and will break down like he did during his short stint in preschool before.

Even more exciting? Jake will be riding the bus! There are two bus drivers and one small bus (yes, the proverbial "short bus".. I couldn't help myself). Kathy said that the children who ride the bus usually LOVE it, and considering Jake's obsession with schoolbusses, I am hopeful. They will even come by one day this week to let Jake try out the bus and maybe go for a short ride around the block. I am nervous and excited for him.

Now I must stop stress-eating like I have been all day, and try not to think too much about the first day of school.

Drawing Again

As it sometimes goes with Jake, all I have to do is voice a concern and he proves me wrong. This morning Jake started drawing again, just as well or better than he ever has. He drew "Joe and Blue" from Blues Clues, as well as a Ladybug. His detail on people (when he draws them) never ceases to amaze me. The green markings on Joe's legs are "socks."

On the other hand, he also sprayed my entire grooming shop with coat finishing spray, dumped out a whole box of powder and rolled himself and his little brother in it, tried to eat berries from ornamental grass, and made "dog food soup" for the dog using her water bowl and some dog food. With every leap comes mischief, although I can handle mischief as long as he's moving forward in other areas. His speech is great today, and he's been talking quite a bit.

Tomorrow we all go meet with the Special Education department to get the results of their assessment. I have already been warned that sometimes this is a hard meeting to go to because they compare your child to "standardized" guidelines. I have no doubt that Jake won't meet many of the requirements, so hopefully I have prepared myself mentally for it.

Speech Therapy Day 7

Speech Therapy didn't go so well on Saturday. Steve unexpectedly met me at TIPS to take Manny off of my hands. That was a relief and made it easier for me, but Jake was upset that he wasn't staying. He cried for a lot of the time. Sometimes I think that nothing is happening with speech therapy with Elizabeth. Not that I think that it is her fault, and maybe she is still just trying to figure him out much like Cindy is doing. He just simply doesn't do any of the activities that she sets up for him. I am quite frustrated with it. But of course we'll keep going with it and see what happens.

Occupational Therapy Day 4

Cindy is still trying to get a feel for Jake, however, after reading the sensory profile that I filled out, she had a much different approach to working with him. She decided to let him lead. Meanwhile, I was videotaping the first few minutes of their interactions so that she can get started on that. She was much more successful getting him to interact with her by letting him decide what activity he was finally going to settle down and do. It was probably also helpful that I took him shopping and wore him completely out before we got there.

I asked her about his drawing, and she said that we should probably watch the issue as a "lost skill," although she took into account what I told her, which was that he often lost interest or seemed to lose the ability to draw any time he was gaining other skills.

Jake had a wonderful surprise during the last 15 minutes of his visit. Bridgett, one of his very favorite people in the world, showed up for her own OT appointment early (totally planned by Heather, Cindy, and I). Cindy was interested in seeing how Jake interacted with other children, and Heather was understanding enough to allow her daughter (a couple of months older, but much smaller than Jake and disabled from cerebral palsy..but don't tell HER that) to withstand the onslaught of a very excited Jake. I guess the "quote of the day" came from Cindy. Its something that I have said a million times when trying to explain Jake's social issues to others, but coming from someone with so much knowledge, and who seems to always have a clinical way of speaking, it just tugged at my heart. She said: "What is so sad about this is, he wants so badly to play with her, to interact with her. Its so obvious that he likes her so much." I don't show emotions when people are watching if I can help it, but I can't think about her saying that sitting here alone without tears coming to my eyes. I wanted to scream "YES! exactly! thats what I keep trying to tell everyone." I know that this is why we don't get invited to so many playgroups. The more Jake likes someone.. the more he hurts them physically. Never in anger or as an act of cruelty, but just because he seems to have no idea what to do with his body when his mind decides "hey! you're cool!"

It seems like we have a long way to go with him when it comes to this particular behavior. More so than speech, cognition and everything else combined. It is the biggest issue that I have when it comes to dealing with my family as well, because no matter how much I beg them, I can't get them to understand that Jake is too big to touch others inappropriately. He is allowed to jump on them, grab them, pinch them, twist their arms around to see their watches. Mamaw encourages him to grab at her throat and pinch while she makes a "frog" sound. A habit that caused him to painfully choke a young girl at a playgroup once while he happily yelled "frog! frog!" Even strangers, when he grabs their arm to look at their watch or when he pulls their clothing will say "Oh, he's OK!"

I am very very lucky to have understanding friends like Heather, Clyf, Bridgett and Cindy. Sometimes I don't know what I'd do without them.

Artist's Block, or Evening-out?

Yesterday we went to the playground with a group of Attached Parents Group moms. I hadn't seen many of them for several months, and some of them looked right and Jake and didn't recognize him. I guess part of it might be the super punky hairdo, but I think its just because he's grown up so much in just a little while. I was so very very proud of him. He was nice to other children. He took turns on the slide. He refrained from touching people and their watches so much (something we've really been working on). And he even climbed to the top of the structure and yelled "Hi You!" to me, almost as if to say "Hey mom! Look at me!" I didn't have to follow him around like a shadow to make sure he didn't grab or pinch anyone. His self-control is just amazing compared to where it was just a few months ago.

On the other hand, he seems to have lost his ability to draw. Now, there have been times here and there where he seems to have lost interest in drawing and then come back to it, but somehow this is different. When I ask him to draw something in particular, he will try to draw it, get frustrated, then insist that I draw it for him. This morning I asked for a house, and he drew a smushed mushroom looking house, then scribbled at it and insisted that I draw one for him. He seemed quite upset. My question about this is: Is this considered a "lost skill," the fear of every parent of an autistic child, signaling some sort of regresion, or is it an "evening out of skills?" Is he using the part of his brain that used to draw really well to work on other things, like speech and social skills? Or is it just a momentary lapse like I've seen before, and he will go back to it? I will have to ask Cindy at OT today what she thinks.




Meanwhile, Jake spends his time being nice to his brother, while I spend too much time on the phone talking to the school psychologist, the OT, the office managers about insurance, etc. It seems that Jake is quite the interesting case and it is taking them quite some time to figure out what to do with him when it comes to therapies. Thats OK though, we have time, and although it is frustrating, I remain hopeful.

Thank you again, Professor Grandin.

I have been reading again. I dont' think I've been able to have time to finish a book since Jake was born, but lately I have motivation. I keep reading anything and everything I can find by Temple Grandin. I heard about her and listened to her interviews on NPR long before I we figured out that Jake was autistic, simply because I felt like she and I had a bit in common, both because I have had to work at being social and enduring idle chit-chat and sports talk, and because of the way that I work with animals by trying to learn their language, instead of trying to make them adapt to mine. I've always, in my 15 plus years working with animals, been irritated when my clients anthropromorphize dogs. It still irritates me, though I tolerate it because I know that it is socially acceptable.

Sometimes I think that that the fact that I've worked with animals my whole life may be helping me journey along as mother to Jake. I know that he doesn't think and feel like other people do, and, according to Prof. Grandin, he may think a lot more like an animal than most people. This is something that I've figured out to some extent on my own, although I was afraid to admit it. I was afraid to admit that using animal conditioning techniques when trying to teach Jake worked better sometimes than trying to teach him like a child with more advanced "human" social abilities. So.. I guess I have been very afraid to admit that sometimes I feel like I'm "training" Jake istead of "teaching" him. I get the feeling that his OT, Miss Cindy, may think that my attempt to be a crackpot behavioralist may have been to Jake's advantage. Yet, I'm on a quest to learn much much more.

Tonight when reading this interview on NPRs website, I had a realization. Well, actually it was more of a validation of something that I had already figured out to some extent. This quote from Prof. Grandin made so much sense to me:

"But the one subtle social cue I did pick up was tone of voice. And the interesting thing about the form of autism where kids mainly echo back what they hear is they often think the tone is the language rather than the words. They have to be taught that the words have meaning. "

When Jake wants to scold someone he says "Maxxx!" in the tone of voice used by a cartoon character from "Max and Ruby." Ruby is the big sister and often scolds Max, who is constantly getting into mischeif. She begins most of her scolding with a high pitched whiney "MAAAXX." When Jake is excited about something he will often exclaim "A clue, a clue!" I have decoded some of this echolalia by using the context of the situation, but having it expressed in so few words by Prof. Grandin has really made an impact on me. Jake is learning that the WORDS have meaning.. but I just have to keep in mind that he is going down a different path to get to the final destination of understanding.

Its hard for me to grasp that Jake has a disability that is not much different than being blind or deaf from birth. Its something that can be overcome, but probably the hardest thing for a child who is blind from birth to learn is that THEY are blind, everyone else can see, they're the different one, not the other way around. Prof. Grandin didn't realize that she thought differently than other people until well into adulthood. I can't imagine what it felt like.

One of my favorite people to read about since I was a child is Helen Keller. I never could get enough of reading her autobiography and I've probably watched "The Miracle Worker" in every possible media imaginable, including live theater. It always fascinated me how her soul could be trapped in a cage for so long, only to blossom and grow throughout her life. I find myself more interested these days in Anne Sullivan, Helen's teacher, because I need to be that person for Jake.