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 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.