Apr 14, 2014

Early Intervention Success Story: A Letter from Two Parents

Dear Superintendent Bernadeia Johnson,

We are parents in the Minneapolis School District writing to you today to with an early intervention success story.

Kindergarten Screening identified our son, Jackson, as a student with a potential social concern in 2009. He was three years old. We declined further evaluation at that time and enrolled him in a private preschool. We learned throughout that first year of preschool that there were, indeed, some very real concerns with Jackson so we started the wheels of evaluation moving with Early Childhood Special Education. A diagnosis of autism was the result of the detailed evaluation and Jackson was placed at Judson Preschool under the wing of Minneapolis ECSE for his second preschool year.

Jackson is our eldest child and we did not know very much about autism. We looked to the teachers and specialists working with our son to guide us along the way. Our family was enrolled continually in Early Childhood Family Education since Jackson’s birth, which also supported and guided us on this journey.

Occupational therapy, speech therapy, social skills groups and special education were all included in that pivotal year at Judson Preschool. These services gently brought Jackson along and he thrived in that environment. The partnership of MPS and Judson Preschool gave Jackson the wings he needed to fly into Kindergarten--prepared to learn, prepared to make friends, prepared to grow.

Jackson transitioned to the Citywide Autism Program and was placed at Lake Nokomis Community School--Wenonah Campus for Kindergarten. His IEP was expertly crafted to include the exact services he needed to meet his goals. First grade at Wenonah continued in much the same way and we were seeing progress with Jackson at every step.

By the time Jackson entered second grade, something had changed. He walked into school and sat down at his desk--ready to learn--in a way that he had not done previously. He basically mainstreamed himself by just being in the main classroom successfully. He spent less and less time with his Autism Resource Team throughout second grade. The skills he had learned during those early years were paying off and working.

At his annual IEP review meeting today, everyone at the table--social worker, Autism Resource teacher, classroom teacher, speech therapist, occupational therapist, parents, and Jackson himself--agreed that Jackson should be transitioned out of the autism program when he enters third grade at Lake Nokomis Community School--Keeywadin Campus next year. He still has a couple of goals remaining on his IEP and he will continue to receive services and support from the Special Education Resource Team at Keewaydin, but he just does not seem to "fit" the Citywide Autism Program anymore.

The reasons that Jackson doesn’t fit in the Citywide Autism Program anymore? Growth. Development. Hard work. Learning. And the amazing list of people below (omitted from this blog post) who worked so diligently to not let our child slip through the cracks and risk being considered a behavior problem.

Jackson scored very high on the recent second grade testing, qualifying him for Advanced Learner Services. He has been a GEMS/GISE participant through ALC at Wenonah throughout this school year. He has been accepted to the STEM Academy to continue GEMS/GISE at Augsburg this summer. Great things are ahead for our son! And we believe firmly that it is the direct result of the great support he has received from educators who believed in him and who know their jobs well.

We are sharing this with you today because we know that you believe in our kids too. And we know that you receive a lot of complaints about how things are going in our school district. Let this letter serve as an example of how Minneapolis is doing things right. Our son is an early intervention success story. ECFE and ECSE scooped him up and helped him get to elementary school in a way that made sure he did not miss out on crucial early lessons but that also preserved his unique abilities so he could shine. We are grateful to Minneapolis Public Schools for investing in him--and our family--from the very beginning.

Thank you.


Catherine & Dan

Jan 17, 2012

Why I don't watch "Parenthood"

I just figured out why I still have not watched the NBC show "Parenthood," despite being implored to watch it by countless friends and family members. Apparently, one of the characters on the show so greatly resembles my son that everyone feels that I really need to watch it. Though I never have.

It's not because I don't like getting into a TV series. It's not because I don't have a TV (I don't, but that doesn't stop me from watching shows in this modern era of the Internet).

But I think it is because I am already living this life with a challenging, bright, frustrating, awesome, difficult, and totally lovable Aspie boy in the flesh and I don't feel that I need to spend hours each week watching a fictional show of a family going through the same thing.

Some would say that that is exactly why I should watch it--because the family on the show supposedly knows how we feel--and I can feel that we're not alone while watching it. My response to that is that we already feel that we're not alone because of the support system we have in place made up of real people with Aspie kids in our area and real professionals here who help us daily. And on the days when I do feel alone, I can promise you that watching a piece of fiction wouldn't change that. Those are the days when I need to have coffee with a friend--parent of an Aspie or not--to ground myself again.

But what I do think is cool about the "Parenthood" show, and what I am grateful for that is a result of all of these incredibly well-meaning suggestions that I watch it, is that it has helped EVERYONE ELSE understand what we're going through a little bit more, without us having to school everyone personally. Each person who makes the connection that the little boy on the show is a lot like Jackson, and then watches a difficult situation on the screen or sees the family's joy in his intense abilities in another area, also makes the connection that our days in this family, in this house, with this child, are a lot like that show. (For better or for worse, since I've never seen it.) They might be realizing why play dates are not always graceful for us, why we hover and give a lot more input than normal when Jackson's having a conversation with someone, and why we are so intensely proud of our son for his intelligence. It normalizes Asperger's for everyone else.

Given that the main reason I don't watch "Parenthood" is because I am already living that life and don't need to see it on the screen again, the secondary reason is that I'd rather watch a completely different "life" on the screen when I do find some time on the couch to watch TV. "Downton Abbey," (the new) "Sherlock Holmes," and "Battlestar Galactica," to name a few. Take me away to a completely different world (perhaps without Asperger's?) and I'm a happy clam. TV time is off-duty time when the kids are in bed, after all. Let me forget and relax a little bit while you watch and learn about us. Then let's meet for coffee to connect and keep it real!

Dec 20, 2011

Jackson's Story

This is a presentation that was given to a graduate course on special education at the University of St. Thomas on 12/1/11. I am posting it here for the sake of posterity.


My name is Catherine and I was asked to talk about my son, focusing on our journey through diagnosis and experiences with special education. Not specifically noted here but not at all insignificant is the support we received from Early Childhood Family Education (ECFE) throughout Jackson's early years (and continuing today). When things got extremely rough and we were pulling out of other programs right and left, we continued with ECFE both for continuity for Jackson and for sanity for me. The unconditional support we received from ECFE served as a pillar of strength for our family when we didn't have very much strength of our own to draw upon.


Jackson is a person of extremes, which will all start to make sense in a few minutes, but it did not make sense to us at all when he was first born. We didn't even realize the extremes until they had long since passed.

Extreme #1:
My pregnancy with Jackson was completely normal and textbook-perfect, and at age 32, I gave birth to him. He was "late"--born at 41 weeks--but that didn't bother us (I can say that now, but I won't say what I said then). Labor eventually started naturally and things were moving along. It became clear, however, that Jackson was in distress and it wasn't going well from his point of view; surgery was our best hope for him. Jackson was delivered by C-section and his first 10 minutes of life were iffy--his first APGAR was a 2, though he did reach a 9 at the end of the 10 minutes. They had trouble getting him to breathe (he had ingested meconium, thankfully not in his lungs), and there was serious work going on around him at first which postponed the immediate joy of his birth. He ended up spending a day and a half in the NICU for various things just to be sure, but then bounced back beautifully and thrived.

Extreme #2:
His body continued to grow and work great with a few exceptions. He developed an allergy to peanuts and tree nuts along the way somehow, which is really just an extreme immune system reaction to something. (We are, consequently, an EpiPen family.)

Extreme #3:
And though he rarely got sick as a baby/toddler, when he did get sick with a GI bug, he was down for the count. He landed himself in the hospital for dehydration due to GI issues (both ends) four times in his first three years. We were whooping and hollering the first time he got sick with a GI bug at age 4 and did not have to go to the ER. Luckily, we've been on a good track record since. Doctors have explored endless options for explanations with us, with no real answer as to why his body just gives up with GI bugs. (It's not a gluten-intolerance thing, since I know someone will ask.)

Yet, despite all of these extremes, Jackson was a very typical baby and toddler. Up until 18 months old, he willingly ate anything we gave him (and lots of it), he was a champion breastfeeder and weaned himself naturally at 15 months, and he slept predictably and normally, including naps. I honestly did not know what the other moms were complaining about in ECFE classrooms when they talked about their babies being difficult.


Good thing I didn't shout from the rooftops about how perfect my child was because the other shoe dropped hard between 18-24 months. Things started to change with his demeanor and we started to see patterns in his play that weren't there before. We did not, however, suspect any problems from these patterns. We actually just thought that it meant he was really smart (turns out it does and he is, but it also meant more). He would play with an intense focus for over an hour with one thing as a 2yo. He was obsessed with trains and would memorize entire episodes of Thomas the Tank Engine to re-enact with his trains. We didn't realize that intense memorization wasn't just a cute thing. It was actually a way of understanding the world (echolalia is the proper term, which we also learned much later).

The tantrums and intensity of emotions came next. I know, I know, all 2yos have tantrums. And all 3yos have tantrums. But you just have to believe me when I say that Jackson's were different. We didn't know why yet and we didn't have the language to defend him with friends and family who thought that we were obviously messing up as parents by letting him "get away with that," but the intensity was just different.


We had him screened for Kindergarten at age 3 (screening occurs between ages 3-5) and, despite the intensity piece just noted, we honestly weren't expecting any problems. He did pass the screening and was "ready" for K (as ready as they expect 3yos to be), but...but? But what? I remember this in a haze now because my world was rocked off its support right at the moment when the screener suggested that there was a social/emotional concern with Jackson that could be explored through further evaluation. Dan and I had a rough morning getting out the door, we completed the parent survey in haste when we were already annoyed with Jackson for whatever he had done on the way there and we both immediately thought along the lines of: 

"What? You're basing this on...what? You were with him for, like, 20 minutes and we didn't even get a chance to really read the survey because our 6mos old was fussy and Jackson needed help playing with other kids in the waiting room. How could you possibly have seen a problem with our precious child with so little effort?"


We declined further evaluation (we weren't mad, just foggy and confused) and left that appointment feeling shattered. He is our first child, after all. What did we know about child development?


We enrolled Jackson in preschool and he started at age 3 years, 8 months old. We chose a Waldorf-based preschool in a home setting that we both felt was gentle and loving and a perfect introduction to school. We had a rocky start there and it never really got any better. Jackson was at the root of many problems at school each day with the other kids as he tried to play but didn't really get what was going on. (He later told evaluators that he was just "walking around, waiting for my mom to pick me up" when they asked what he did at school.) The teachers weren't prepared for him either and lacked the information/resources to handle his differences and meet him on his terms. Instead, we had phone calls and conferences and quick meetings in the entryway to hear about what he was doing wrong, with no answers and no direction.

"What's wrong with him?" was the question of the year and it got very old and tiring to defend him to the Waldorf philosophy when we didn't know what was wrong either. We felt beaten and tired.

So we pulled him out of school at the end of February.


That was empowering (reminding ourselves that preschool IS optional, after all), but then I was back to having him home full-time, still having no answers and no way to help him grow out of his rigid styles and patterns. We decided to call Minneapolis Special Education back to see if the invitation for further evaluation was still valid (it was, of course) and we felt good about that. But then we had to wait two months for the evaluation to actually begin. We tried to be patient, but we were a little panicky at home during daily living. To say that we needed help was an understatement. We had no words to use to defend Jackson against friends and family members who were postulating about the problems, we had no tools to work with Jackson, and we just wanted to hide in a cave with both of our kids until everyone went away.

We didn't hide. We survived that long winter and the evaluation started in the spring. Once we got Jackson going with his month-long evaluation process, we finally felt like we were in a well-oiled machine. We were in good hands and he was (finally!) being understood. No one was mad at him anymore. His special ed. teachers were, instead, proud of him for some of the above average traits they saw within him. Finally, we could share all of the amazing things about Jackson along with the embarrassing things and have some help putting together the puzzle pieces.

Puzzle pieces...now I totally get why puzzle pieces are used as the symbol of autism. Autism can be a 2000-piece puzzle of a dark, starry night that comes with a blindfold for the parents. Being expected to assemble that puzzle as a parent, with little support or understanding other than from your partner who is just as confused (and blindfolded) as you are, while the other parents got nice, big pieces for their kids' puzzles that all plop easily into place can be a little daunting.

The evaluation ended with the official word on Jackson: "educational label of autism." Both my husband and I probably felt a little saddened by this (it's not like anyone has kids hoping they'll have autism), but relief was the main emotion at the table that day. We had spent time preparing ourselves for this possible verdict and so it felt "good" to be right, for once. (Even though we hadn't seen the forest through the trees so long before.) We had his educational diagnosis cross-referenced at Children's Hospitals and Clinics of Minnesota and our developmental pediatrician there concurred completely. (This cross-diagnosis between the educational and medical fields ended up benefiting us in insurance matters later on.)

We still had a tough summer ahead, since Jackson didn't qualify for summer programming, but our days were made easier with this new way of understanding our son. His intense love of trains was waning and being replaced by this Dr. Science hat of his. We've always gone hiking and camping with our kids and being outside is sort of our safe haven. We spent A LOT of time outdoors that summer and just reveled in what Jackson inherently knew and quickly absorbed about the natural world. If you ask him what he wants to be when he grows up, he'll tell you "an entomologist, a paleontologist and an archaeologist. Maybe a geologist. But definitely an entomologist first, then the other ones."


Jackson was placed at Judson Preschool through Minneapolis Public Schools Early Childhood Special Education that school year and an IEP (individualized education plan) was crafted especially for him. This plan included special ed. support in school, speech therapy (for social use of words, not articulation), and occupational therapy. Busing was also included, which was a bonus for this mom with a baby at home.

To say that Jackson thrived at Judson is a gross understatement. He had his difficulties there too and behavior problems were regular discussion topics. But just the fact that his teachers were working with him from where he was instead of expecting him to get on board with their program right away, made all the difference. He simply has different triggers, on/off buttons and switches in his mind about how things work than typical kids do. The teachers tried to learn from him first so they could then get into his mind and teach him. It was amazing. There isn't a day that goes by that we don't give thanks for this generous act of scooping Jackson up and "protecting" him under the wing of Special Ed.

And that's the point, right there: Jackson looks normal. He acts normal most of the time. There is no reason to believe that there is any problem with him until you spend a lot time with him and see patterns (and you have to be looking for the patterns). He technically passed that K screening way back when so he could have gone to K "as is." But we have no doubt that, had he not had this amazing extra support, he would have ended up in the principal's office daily and just been a problem child over all.


That year of preschool was spent getting him ready for K and now he is enrolled in the autism program at his school and doing very well. He has speech and OT in his IEP again this year and spends time in both his mainstream K classroom and the autism support classroom as needed. We had similar transition issues as we had in previous years and a few rough weeks where he didn't want to go to school at all, but the teachers have been amazing in coming up with creative ways to gently bring him to the table. They truly care about him and it shows. He says gym and recess are his favorite parts of school, and he is learning to read and write. Putting a pencil in his hand before K was like putting a burning stick in his hand--he hated anything written. But now? He spends time writing everyday and is proud of his work. Reading is coming along naturally too, though I suspect he can actually read a lot more than he's sharing with us. He's got a perfectionist "I don't want to try unless I can do it perfectly the first time" style of doing things...

We've had a lot of rough spots with Jackson over the past few years and we're not exactly sure what his adult life will look like (though we're pretty sure he'll be a scientist of some sort). He is a great thinker who contemplates evolution and multiplication in his head (they don't start multiplication until 3rd grade). He is also an extroverted, friendly person who wants friends, but who lacks the innate ability to be a friend. He is learning though, and his rigidity is melting more and more each day. His teachers tell me that he is genuinely friends with over half of the kids in his class, and last month at home he did a 180 from his picky eating nature and decided his favorite food is cooked collard greens.

Friends and collard greens. There is hope yet.


Other services pursued for Jackson:

Developmental pediatrics: We visit every 6 months to follow up, report progress, and get tips and direction for getting through rough spots.

Occupational therapy: We did a 6 month stint of OT privately in which Jackson received treatment for his auditory sensitivities. Fine motor skills were also addressed with OT, since his grasp was weak. (Weak grasp with a pencil or other non-desired instrument, yet he could still catch a fly Karate Kid-style between his thumb and forefinger...)

Behavioral psychology: We consulted with a psychologist concurrent with OT services for assistance with breaking down the rigidity.

Pediatric allergist: We have an on-going relationship with an allergist for Jackson's peanut/tree nut allergy. He is not expected to outgrow his allergy.


Other notes about Jackson:

• sensory seeker: He craves sensory input and responds well to large-motor stimulation and deep tissue techniques.

• auditory sensitivities: He shuts down if noises are unexpected or too loud. This took a long time to identify because he shuts down quietly and acts as though he's still "with" the group. He participated in the Therapeutic Listening program for 2 month segments and wears ear covers as defense against sound when needed. He seems to be outgrowing this sensitivity and wears the ear covers less and less; we are assuming the Therapeutic Listening program worked, though it's difficult to test and confirm.

• oral stimulation: A newer development, he seems to need to chew on things; he often has his shirt in his mouth. We're attempting to bypass this with chewing gum (sanctioned by aides and teachers), which seems to be working.

• overall sensory discombobulation: He either uses a squishy seat, hold a squishy toy of some kind, or chews gum (or all of the above) in situations where he needs to sit and pay attention. He seems to need his body to be under control before his mind can fully process information and participate.

• memory like an elephant: Even if he seems silly or out of it, he can still repeat what was said in a group or meeting later on. It may seem like he's not paying attention, but his mind is like a little tape recorder, constantly running.

Aug 10, 2011

"Environment Poses a Knotty Challenge In Autism" New York Times, August 8, 2011

Despite the dearth of posts on this blog, I am still reading about autism continually and learning so much about my son over the course of many months of therapies and new discoveries. I write blog posts in my head almost weekly, yet I can never seem to find the time to record them. (Sorry, reader(s), I know that's not fair! What can I say? I'm a busy mom who returned to school and has two small kids, one of them a total handful!!)

This recent article from the New York Times really spoke to me though. Not a lot of new information, but framed a bit differently.

"And I wonder if in giving advice about prevention, we risk repeating the errors of the past, making parents feel they’re to blame for a child’s autism because they failed to micromanage an environment full of complex agents with potential to interact with fetal genes in a range of damaging but poorly understood disruptions." 

I DID avoid pesticides, haven't microwaved plastic in years and religiously took my prenatal vitamins! I promise that I don't feel a new wave of guilt from this article, but it is all interesting to think about, regardless.

"Environment Poses a Knotty Challenge In Autism" New York Times, August 8, 2011

Jan 25, 2011

Trilobites and Ammonites

(originally posted at yogurt & granola, 1/24/11)

A friend told me that the Science Museum of Minnesota has a Preschool Playdate program on Mondays and I decided this week that it was time to visit. Being a former museum professional myself, I had visited the Science Museum many times previously, but never with my own kids (I assumed that the content was too old for them still).

Amelia is still too young to really "get" the exhibits, though she absolutely adored being there and experiencing it with her brother.

But her brother, the big five-year-old, LOVED it.

Jackson spent the summer collecting anything and everything he could find in nature that was interesting: shells of bugs, seed pods, agates and rocks and even an entire, intact monarch butterfly (dead). He became Nature Boy and declared that he was put on this earth to collect things.

People would ask him "what do you collect" after he finished telling them that he is a collector, and he would reply "everything." It's sort of true too, though we're trying to hone his collecting skills a bit to make sure that his bedroom doesn't end up resembling a junkyard.

The same friend who told me about the Preschool Playdates at the Science Museum mentioned their Collector's Corner trading post program where kids can bring in an object they found in nature and trade it in for another item at the museum. They have to share their knowledge about the item and it is assessed by the staff who then determine its point value for trading. I knew at once that Jackson would love this, so that was the big push behind our visit this morning.

Given that Jackson has Asperger's, I did a lot to prep him for the visit. We talked about how Collector's Corner works, which item would be appropriate to share (no, sweetie, they don't want a button or bottlecap from your collection), and what it might be like to give it up and leave the museum without it. I presented the option to him of just visiting today and not taking part in the trading, so he could check it out first. We could go back another time to trade if he wanted, I said.

He just did an "uh huh, uh huh, uh huh" routine with me during our prep so I wasn't sure what to expect.

We got to the museum early and were the first ones to the Collector's Corner (probably the biggest key element of our success) and after I said the pleasantries and greetings, he dove in:

"Hi, I brought something to show you, it's a trilobite. It's also an arthropod. It's a fossil and it lived millions of years ago. It's related to a horseshoe crab."

(exchange of information ensued with the impressed staff member, he earned 3,000 points for his trilobite and an extra 500 "for knowledge")

< < < excuse me while I beam > > >

He then proceeded to explore each of the trays of items within his point range for an item that he could take home. Quietly, carefully and purposefully, he selected a large piece of quartz. He decided he liked it because it was a crystal. (I thought the fossilized sea urchin was cooler, but it was his trade.)

Then, (this is where it gets good), he went on to tell the staff members what else he saw in the case. Some things were obvious (sea horse, starfish, sea urchin) but here's where he surprised me: "Oh, there's an ammonite. It's a fossil."

To quote his father's text message to me later in the day, "Ammonite? WTH is an ammonite??"

My reply to him "I don't know, I thought you taught him that!"

Turns out that neither of us taught Jackson about ammonites so we assumed that he learned it at school. (Preschool though? I was still skeptical.) At home, I turned to his new Kingfisher First Encyclopedia that his dad has been reading to him every night before bed and found the page on fossils. This is what I saw:
Jackson then came over and said, "Yeah, mom! That's the page about ammonites! See? They were sea creatures and then became fossils. Pretty cool, huh?"

Yes, totally cool. Even more cool is the fact that Dan breezed by that page almost a month ago and hasn't re-read it to Jackson since.*

One gloss-over of one part of one page in one book almost one month ago, and the kid pulls it out of his memory the second he sees a real specimen in the museum and shares his knowledge of it as if he were a nerdy 9yo.

Jackson has been known to stutter and get ahead of himself when he gets excited or nervous about sharing his knowledge. But today, in the Collector's Corner, he acted, well, like a nerdy 9yo who had absolutely no qualms about talking science with museum people. He made eye contact, had a patient exchange of information (a.k.a. a conversation), learned new things and shared what he knew.

It was amazing. Especially because he's not a nerdy 9yo (though he will be nerdy when he's 9, I'm sure). He's 5.

Five. Tomorrow is his official birthday and he's just five. Or, sometimes I feel like saying "how can he already be five??" But mostly, I'm amazed that his age and his mental abilities are so disparate. That's Asperger's for you though.

The other super cool thing about this though, is the discovery that JACKSON LOVES SCIENCE. (duh) He loves it in a way that makes all of the other negative parts of his behavior or interactions with other people (temporarily) go away. His teachers have noted that his best days recently have been the days where they've done science experiments at school. He becomes a "normal" kid and just is really on fire in an appropriate way when engaged with science. He talks to kids, waits for replies, shares information and stays focused on the activity at hand.
That's what I saw at the Science Museum this morning. He tuned in, exchanged information, learned a lot and was regulated (in terms of body movement and sensory stuff) during our whole visit. Which is saying a lot, considering that the museum was packed with both people and potential overstimulation at each turn.**

Needless to say, he crashed in the car on the way home. This was my solid reminder that he IS still "just" five and can still get pretty worn out from a lot of learning and activity.
But the surprises continued when we got home:

Mom to a groggy Jackson coming in the house: "Are you ready for a piece of chocolate birthday cake, Sweetie?"

Jackson: "No, thanks. I'm going to go upstairs and sort my science collections like the museum. I have a lot to do."


I am happy to report that he did emerge for chocolate cake about ten minutes later, so despite unique traits showing up here and there, he is, in fact, a "regular" boy.

*We're starting to wonder if he can read, even a little, but doesn't want to share this until he's perfected it. That might explain the recognition of the tag "ammonite" next to the specimen at the museum.

**We bought a membership to the museum and consider it a very good investment.

Aug 19, 2010

Happy Camper

(originally posted at yogurt & granola)

Jackson attended three different sessions of (half-day) summer camps this year, with the last one ending today. I was pretty nervous sending him off to camp, though not because of the usual parent-child separation issues. His Asperger's definitely throws a curveball at any drop-off scenario, so we had a lot of questions and wrote a lot of notes/ideas on the health and general info forms at the outset.

All in all, the summer camp programs he attended get a big, fat, shiny A+ from our family! We were thrilled with how everything went and Jackson just had a lot of fun.
The first session was at a local nature center run by a county parks program. It took me awhile to pick my jaw up from the floor when they told me that they can bring in a paraprofessional to assist my special needs child throughout the camp at no extra cost. WOW. We signed on for this and were so, so happy with how it worked.
He attended two separate sessions at the nature center and both of the paraprofessionals were experienced with Asperger's, worked with small kids and and had a general (and obvious) love of nature which made it super easy for them to help Jackson at nature camp. This rocked. I drove away from drop-off each day with a huge grin on my face due to these people. The camp staff were excellent and the interns/volunteers were so, so cool too. But knowing that there was an extra person there to make sure that my kid 1.) understood the teacher's directions, 2.) didn't miss social cues from the other kids, 3.) stayed with the group instead of wandering off in the woods (he's a born hiker...) and 4.) didn't go into sensory overload without someone there to help him fix it was AWESOME.
The other camp he attended was a theater camp. The developmental pediatrician we saw back in the spring during our diagnosis phase recommended that Jackson try out a theater class since he loves to pretend that he's a different character each day. (This is one way that he deals with overwhelming social stuff--it's sometimes easier to be something else!) We heard about this awesome local theater offering camps for young ages from a friend and it didn't disappoint. (Well, it did, kind of, with logistical issues, but the programming was fantastic!)
The theater camp had a 10-minute performance at the end of the camp each day for the parents to attend. I was pretty sure that Jackson would not want to participate in these shows, but honestly, he surprised me. He listened to his teachers, he did the group movements, and generally was a part of the cast. There were a few times that he got overwhelmed with the sound in the room (he has superhuman ears), but instead of having a meltdown (very typical for kids with Asperger's/ASD), he withdrew to the back of the room and put his hands over his ears. Jackson has amazing coping power, so I'm really proud of him for how he handled this. But we're working on ways that he can put some of his sensitivities aside so he can feel able to join the group.
There were a couple of misunderstandings during the camps, like when Jackson wasn't participating in circle time at the nature center but was instead rolling around on the floor and starting to distract the other kids. The paraprofessional told me that she tried to get him to join (or at least stop rolling) but he wouldn't. He wasn't being loud, just not doing was he was supposed to be doing. Later that night, he told me that he was being a rolie polie bug by rolling around on the floor. I asked him if he told his teacher that. "Um, no," he replied. "Do you know that it's not okay to do that during circle time, Jackson? You can be a rolie polie bug and show your teachers and friends at a different time but not during circle time." He said "Oh, I guess that makes sense. I'll have to tell my teacher what I was doing when I go back."
So, lots of learning took place during summer camp this year, to be sure.
At the beginning of the summer, I still wasn't sure that my son would be able to handle summer camp, let alone a new year of preschool in a new place with new everything (including an IEP from the school system). But after a few sessions in these super cool places this summer, I know Jackson will succeed at school. He has a long way to go socially still, but we're on the right track. He is, quite simply, growing up. Some of the really, really difficult things we've had to deal with with him are fading a bit because he's growing up and finally taking in the explanations of why we have to do things certain ways. There's a really intricate locking system to get into Jackson's mind and I feel like we made another "click" or two towards success this summer.
Regardless of the difficulties that being an Aspie present for my son, he is still one happy camper. (Yes, he wore his cape to summer camp.) :)

Jul 19, 2010

Picky Eating Article from TIME

Today's article from TIME magazine connecting picky eaters with Autism is very interesting. Jackson was an amazing eater until 18 months old, when he just suddenly stopped eating most foods and focused on only a few. He's now an incredibly picky eater with a mainly white foods diet (with allergies to peanuts and tree nuts to boot). Very interesting to note that there may be a connection between picky food choices and Autism.

Is Picky Eating an Early Sign of Autism? TIME magazine, July 19, 2010

May 25, 2010

For the record...

I'm learning that there seem to be a couple of different "camps" for thinking about Autism in our society. Not surprisingly, if you google "Autism," you'll come up with thousands upon thousands of research articles, blogs, and sales sites with the latest products that you must have if your life has been touched by Autism. (And I'm happily eating up some of it, clearly.)

So many of these sites seem to come from the angle of curing Autism or viewing it as an undeserved burden that is plaguing children today. And while I want to state clearly that I agree that it is a burden on families and children to readjust to life with Autism in the family, I do not view it as a disease that must be cured.

My son has Asperger's. I do not believe that he "got it" from any of his vaccines, I do not believe he "got it" from any environmental factors and I do believe that his brain is simply wired a little differently than his father's and mine and that his unique traits do come from his family members, straight out of the gene pool into which each of us threw our genetic codes.

To view Jackson's condition as a disease would be a disservice to him and to the community of people who already know and love him so well and to which he has already contributed.

So what if I have to teach him a certain social skill five hundred times in a row over years and years that other kids his age are learning by osmosis? So what if he is sensitive in certain situations, limiting his or his family's participation? So what if he really, really, really likes trains and bridges and wants to play with them, study them and talk about them all the time?

He also notices the moon in the middle of the day almost every single day, remembers more from his early years than even I do and can tell you exactly how many light bulbs are out in every store or restaurant within just a couple of minutes of arriving.

I don't call that a disease. I don't know exactly what he's going to do with this level of insight into the world, but it takes all kinds of minds and I'm excited to walk the path with him to help him find out.

I don't want to cure my son of Asperger's, I want to embrace him with his Asperger's blanket wrapped tightly around him--as a buffer between our two worlds--as I strive to help him learn more about ours and absorb all that he'll let me about his.

I think that maybe the parents/organizations who are trying to cure kids of Autism might be missing a very important piece of the puzzle...

New on the Nightstand

Just picked these up from the library tonight:

Not Even Wrong: A Father's Journey Into the Lost History of Autism (2004) by Paul Collins
• Paul Collins is one of the guests from the Speaking of Faith show about Autism earlier this month and I was really excited to read his book after hearing the show. I cracked it open immediately when I arrived back home and I'm already on chapter two.

Different Like Me: My Book of Autism Heroes (2006) by Jennifer Elder
• Jennifer Elder is the other guest from that SOF show and also happens to be Paul Collins' wife. Her book is written for older kids and is filled with 2-page spreads on famous (and not-so-famous) people who either had/have Autism or it is speculated that they did. Sir Isaac Newton, Andy Kaufmann, Albert Einstein, Temple Grandin... Looks pretty cool to me.