On the other side of the fence.

Friday, June 8, 2012
Something big has been brewing for a while now that I haven't shared at all on here. Well, sort of. I've shared some of it, but just not in a collective way.

I started seeing it in September. I chalked all of it up then to how his world had been flipped upside down. Mommy was home all summer, went back to work, Bumpa Tom lived with us, and then when Mommy finally came back home, she brought home a baby that ate up too much of her time. From Henry's perspective, that's a ton of major transition. All kids tend to regress and exhibit behaviors they otherwise hadn't while in times of transition.

There was the random "jibber jabber" talk. Using odd phrases or words that either weren't real, or didn't make sense with how they were put together. There was answering 75% of questions with "Mocha" even when he knew the correct answer (and to often basic questions).

There was the addition of new neighborhood friends that wanted to play with us and have frequent play dates. We wouldn't play. We wouldn't speak a word for the sake of playing, telling, asking, using a name, or standing up for ourself. We would only talk to mommy. We would tighten up when other children got too close.

We wanted virtually almost nothing to do with Claire. At least in the sense of cuddling/hugging/holding her. If she got too close, we freaked out. In the end, in light of all of this, it is the one thing that continues to make my heart ache.

We have food issues. We've had them since at least 7 months. We eat off a very short list of foods. A list that doesn't include childhood staples such as hot dogs, macaroni and cheese and spaghettios.

We hate to get dirty during meal times. Meal time ceases to continue until the tiny speck of ranch is wiped off of our hands.

Since he was born, I'd been filling out a questionaiire with the county every 4 months or so. It was a free program you could enroll in and keep track of typical development in your child. The checklist always came back totally fine, normal, and usually, he was ahead of the game. This incredibly cognitively advanced child mastered colors, shapes, and many letters before he was even two. We had 5 year olds in preschool that didn't know half that stuff.

In December, I filled out one of those questionaiires and made sure to note some of the odd language things he was doing that had not resolved themselves after 2 months of living this new life with a new baby. And noted how increasingly worse the food and sensory issues were getting. This time, they called me back, and the result of all of that led to this post. I knew exactly what was buried in the back of my mind, but I decided I'd leave it to the opinions of outsiders to tell me what I thought may be true.

Only, they found nothing, brought up nothing other than that he appeared to be incredibly gifted with some "sensory issues". I left it alone. I chalked that up to my over analysis of development, being that I was an Early Childhood Special Education teacher. I knew everything there was to know and was incredibly critical of even the tiniest little red flags I was seeing.

Fast forward to January. We enrolled in a "Giggles and Wiggles" class at the community center with two other families in the neighborhood. Back in the summer of 2011, we did ECFE where there was play time, circle time, snack time, and separation time. He did amazing there. Participated, answered teacher questions, separated from me easily. Everything he *should* have been doing, he was doing.
Except, at this Giggles and Wiggles class, we didn't. We wouldn't go chase after a ball if there was a child within 5 feet of it. We wouldn't participate during circle time. And we flipped out and had a screaming, alarming tantrum over the parachute. I didn't recognize him, and I had to remove him from the circle briefly. He wouldn't talk to the teachers or answer their questions. He wouldn't let them give him a stamp, and he wouldn't go up to the front to grab a toy out of the bin (something he easily did last summer).

My suspicions were hightened again. But again, I chalked it up to it being a new experience in a big gym, and he was one of the younger ones there. Surely it must be the reason why he looks so different than all the other kids?

We attend a birthday party in January and have a total freak out right before it was his turn to take a whack at the pinata. Blood curdling screaming because he thought I was somehow going to make him do it.

In March, we attend another birthday party where there are relay games and a giant bounce house. He'd seen one before at Chris's work and loved it. He wouldn't go anywhere near that thing until every last child was out of it. Wouldn't stay within the group without myself or Ryan holding his hand. As per usual with the other experiences with children, wouldn't talk to a soul other than mommy and daddy.

A week later we have ANOTHER birthday party to go too. This time, we prepped him a bit more, but thought the worst would still likely come as it was a dance party and there would likely be lots of "participation". Amazingly, he did great. He didn't go near any other child or or talk to anyone else, but he enjoyed himself and participated as long as daddy was right there with him.

Hmmm. Ok. Maybe it's all alright. With a little prep for new situations, he does better. Add that to my list of things to remember.

But then came the straw that broke the camel's back. His 3rd haircut, which we did after we took him to the Lorax back in March. There was no prep. It was admittedly 100% our fault for attempting it without prep and for forcing it to continue through the end. We take him to Kid's Hair where they make every effort to make it fun, including suckers, stickers and a TV with Elmo playing. As my parents can attest to (because they were waiting in the hallway), he was a different child. The screaming was unbearable. 2nd haircut, he evenutally calmed down when I sat him in my lap and sang to him. Not this time. Nothing would make him calm down. He was so emotional that I literally didn't recognize him. I don't know what it was about the haircut, as he's never had a bad experience, but as I looked at the tears in Ryan's eyes through the tears I had in my own eyes, I knew that this response was far, far away from typical.

Going off of all of that and the other things that happen around the house which include:

Always having to feed the dogs.
Always needing to let the dogs out.
Turning on the light and opening the door when going to the bathroom.
Brushing his hair and teeth first.
Freaking out when Claire gets too close.
Not liking tight hugs.
Zipping up his pajamas.
Biting his fingers in frustration.
Flipping out when you make a big deal or get too excited over something (case in point, he has yet to refer to ANY of his pirate stuffed animals that were his potty training rewards by name...we displayed too much excitement over them to begin with, and while he sleeps and plays with them all the time, he won't refer to them by name).

There are many more, but for the sake of time, that's all I'll report for now. When any of the above DON'T happen, it's typically a full fledged tantrum, for instance, repeating over and over "I want to let the puppies out", over and over and over. It was to the point that we had to tiptoe around things and anticpate what he was expecting to be able to do and try to avoid the tantrums all together.

I made the call in early April to the school district. By this time, I had more than enough data that in conjunction with my expensive U of M education and 3.5 years of teaching experience told me that I needed to ask for an ASD evaluation (Autism Spectrum Disorder) for my own son.

I spoke with my supervisor at school who also doubled as the district ASD specialist. I think in some small way I was trying to get someone to tell me I was crazy and looking at things with too critical of an educator's eye. She sent me a rating scale to fill out, and then I knew without a doubt that I was making the right decision to have the evaluation done, regardless of the results.

Hence, jumping over to the other side of the fence. I had many kids with ASD in my short stint as an ECSE teacher. I had a handful of kids that I personally picked out of our classrooms and knew an ASD evaluation was warranted. In 3.5 years, I was never wrong about any of those children. Every one that I thought would qualify did. In my heart of hearts, I knew this had to be done for Henry.

So, the school district comes out and observes him playing with me, conducts a structured interview with me, observes him at a library story time, and reviews his previous evaluation.

For those of you who need a little background on MN Special Education Laws, here is what the criteria looks like and what a child needs to display in order to qualify--taken straight from the state website.

Subpart 1.
Definition.
"Autism spectrum disorders (ASD)" means a range of pervasive developmental disorders, with onset in childhood, that adversely affect a pupil's functioning and result in the need for special education instruction and related services. ASD is a disability category characterized by an uneven developmental profile and a pattern of qualitative impairments in several areas of development, including social interaction, communication, or the presence of restricted, repetitive, and stereotyped patterns of behavior, interests, and activities. These core features may present themselves in a wide variety of combinations that range from mild to severe, and the number of behavioral indicators present may vary. ASD may include Autistic Disorder, Childhood Autism, Atypical Autism, Pervasive Developmental Disorder Not Otherwise Specified, Asperger's Disorder, or other related pervasive developmental disorders.

Subp. 3.
Criteria.
A.
An educational evaluation must address all three core features in subitems (1) to (3). The team must document that the pupil demonstrates patterns of behavior described in at least two of these subitems, one of which must be subitem (1).
(1)
Qualitative impairment in social interaction, as documented by two or more behavioral indicators, for example: limited joint attention and limited use of facial expressions directed toward others; does not show or bring things to others to indicate an interest in the activity; demonstrates difficulties in relating to people, objects, and events; a gross impairment in ability to make and keep friends; significant vulnerability and safety issues due to social naivete; may appear to prefer isolated or solitary activities; misinterprets others' behaviors and social cues.

(2)

Qualitative impairment in communication, as documented by one or more behavioral indicators, for example: not using finger to point or request; using others' hand or body as a tool; showing lack of spontaneous imitations or lack of varied imaginative play; absence or delay of spoken language; limited understanding and use of nonverbal communication skills such as gestures, facial expressions, or voice tone; odd production of speech including intonation, volume, rhythm, or rate; repetitive or idiosyncratic language or inability to initiate or maintain a conversation when speech is present.

(3)

Restricted, repetitive, or stereotyped patterns of behavior, interest, and activities, as documented by one or more behavioral indicators, for example: insistence on following routines or rituals; demonstrating distress or resistance to changes in activity; repetitive hand or finger mannerism; lack of true imaginative play versus reenactment; overreaction or under-reaction to sensory stimuli; rigid or rule-bound thinking; an intense, focused preoccupation with a limited range of play, interests, or conversation topics.

So, to break that down for you, a child has to have behaviors checked off in at least two of these areas--one of which has to be in area 1.

I looked at the criteria to refresh my memory the day before our evaluation results meeting. Based on the data I had been informally collecting in my head and everything I told the district ECSE team, I thought he'd qualify. I even checked off the the behaviors I assumed they would have checked off.

Only, the meeting came, and they didn't qualify him. After refusing to conduct the standard Autism evaluation tool because they said they don't do it on kids younger than 3 (even though the district I worked in utilizes it), they had only done this vague parent interview form which didn't catch all of the some details/red flags I was seeing. They originally checked off "repetitive or idiosyncratic language" in area two (that's where the jibber jabber falls under and the repeating adult like phrases out of context and without understanding their meaning). In area three they checked off the "insistence on following routines or rituals" and the "overreaction to sensory stimuli". That meant he didn't have that required behavior checked off in area 1. If you scroll back up, you will see that area one covers SOCIAL INTERACTION. Are you kidding me people? I've sat here for a month in at least 3 separate meetings begging you to understand the level of anxiety this child displays with social interaction and how it was essentially NON-EXISTENT, and that's the area where they couldn't come up with a behavor to ligitimattly check off? The school psychologist was annoyed with me, I could tell. It was her subjective interpretation of the two assesment tools she did that ultimately decided that he didn't qualify. I was fighting her work, and she knew it, and she said some pretty insensitive things to me such as "I was already very generous with the scoring. He came out at 31. He needs a 32 in order for me to qualify him". We did not observe any of the social interaction concerns that you noted in our observations.

I was beyond livid but trying to hold it together so that I hopefully won't forever be known as "that mom". One of their observations was of him playing with ME. Yeah, he's totally fine playing with one of the people he's most comfortable with in his life. The other observation was at library story time where he virtually didn't participate, wanted to sit in my lap and tensed up when a kid came anywhere near him, but the school psychologist's interpretation was that he did fairly good and seemed to be interested in the other children since he attend to the whole story time. Biggest bunch of BS ever.

So I fought back.

As I sat there crying, trying to make my/his case (bringing up at least 5 examples of poor social interaction and the incredible anxiety he displays that had all happened within the week), the cold  members of their team offered nothing and suggested nothing other than "we'll see how he does in school and we can always revisit it." Right. So let him fall on his face socially in school, let him learn to fear and hate school because it's such a social nightmare for him, and then we'll take another good 2 months to assess again? Great. He might get help in Janurary if you look at it that way.

Thankfully, I went to school for what I did and had the job that I did. I knew EXACTLY what I wanted, what I needed to do to get it and knew I was going to fight this to the death. Like literally. I would have taken this all the way to court, because you can. As parents we have to fight like hell for our kids and I was completely ready to do whatever I needed to do to get my child to get the help he needs to be successful.

So, in the midst of breaking down in tears, I went over all the specific examples, and demanded that they tell me they didn't think he had a "gross impairment in making and keeping friends", "prefers isolated activies" and "demonstrates difficulties in relating to people". Those were the three I thought should have been checked off in area 1, and the three I KNEW needed to be checked off in area 1.

Rather than doing their job and offering a better suggestion than "Let's wait and see". I told them I knew of a better rating scale. At first, the school psychologist said they didn't have it. The district rep that was there immediately replied "We'll get it." It seems the psych was hell bent on being right for her own purposes and I was completely irritated with it and her.

Then, I suggested that since they didn't see what his social interaction looked like with other kids, maybe it would be a good idea to observe a situation that would show some of the behaviors I spoke of.

Ding, ding, ding. Sure, that sounds like a great idea! Are you kidding me? That was supposed to be YOUR job as the district. Despite them knowing that I had been an ECSE teacher, I was SUPPOSED to be the parent.

This is what their response SHOULD have been when they realized they didn't get him to qualify with the assessments they chose to do.

"You know, he's really close and we're really on the fence about this. The only area we were unable to check off based on what we saw (because by law, the behavors have to be observed within the evaluation in order to be checked off), we should really take another look at his social interation. How about we do another observation". It wasn't supposed to be my job to do that, but theirs, and now I have a very bad impression of this district.

So, we agree upon getting this second rating scale and setting up a play date where the ECSE will come video tape/observe him and his non-existent interaction with peers and unfamilar adults.

During the observation, Henry didn't speak to his peer one time. Not one time in 50 minutes did he utter a word to him. He played along side him, but they didn't play together in any way despite the peer's best efforts to do so. Henry also didn't stand up for himself at all when his blocks got knocked over or when the giant dinosaur was pushed on him. Literally no reaction. Out of all the things I saw during that play date, that concerned me the most. That he has too much anxiety about social situations to even tell a peer "stop" or "no".

The rating scale hit on every single little behavior I had seen. Many things he was doing often or frequently.

Fast forward 2 weeks and I get a call that yes, he indeed does qualify.

The meeting was yesterday, and low and behold, the items in area 1 that I knew needed to be checked off were the exact areas they ended up being able to check off based on the observation and rating scale they added.

What does this mean?

First of all, this evaluation is an educational evaluation. It's not a medical diagnosis of autism or Asperger's (which is literally going to become non-existent when the new DSM-IV comes out next year, I believe). A medical diagnosis would need to be conducted by a private instituation. He'd likely come out PDD-NOS as that's the medical label I've seen most young children get.

So, this means that Henry meets the educational criteria to receive educational services for help in the areas of social interaction/communication that fall under the disability category label of ASD.

Is he truly a child with some form of autism? Maybe not. I've seen many kids like him get dismissed by the time they reach 1st grade if they had the adequate social help in pre-k and early elementary. It doesn't mean that their "autism" went away, but likely means that this category of kids are displaying something else entirely, but yet it falls under what is currently the educational criteria for ASD.

Or, maybe he will struggle with these things long term. Maybe he would get a medical diagnosis if we tried for that in the future. If he does, we obviously will continue to fight to get him whatever he needs to be successful through school, college and adult hood. I want nothing more than for him to reach what I believe is an enormous amount of potential (based simply on his cognitive level as a 2-3 year old).

He will still go to the same preschool I have him signed up for. In my heart of hearts, I knew this would possibly happen, as it's why I chose the preschool I did. He will be in a program that sounds very similar to the one I worked in where the ECSE teacher team teaches with the regular ed teacher and is in the room the whole time. She'll be there to help him grow socially during all various situations in the classroom.

As part of the FAPE law (free and appropriate public education), these services are provided at no cost to us, and he also can get transported by the school bus. While I definitely will have him ride the bus at some point, we will start the year with me taking him to school until we've successfully mastered the giant transition of going to school in and of itself.

So let me tell you what I don't want to hear. I've heard it all before and none of it is helpful.

"He's just shy". Shy is needing a little time to warm up. Shy is not avoiding children at all costs and refusing to go near anything that has a child within 5 feet of it. Shy is not not standing up for yourself in times of distress because you have too much anxiety to speak in front of peers.

"Everyone is quirky". While that may be true, it doesn't change the fact that Henry needs some help socially.

"So Henry's autisitc?" He's not autistic. If he does ever come out with a true diagnosis of some form of autism, he'd be a child WITH autism. Big, big, big pet peeve of special education teachers. Don't ever use the word autistic. He's a child FIRST.

"He'll grow out of it". While that could possibly be true, there's no way that will happen without a little extra help based on the level of intensity of his behaviors.

"Short bus jokes". While it's so ingrained in our culture to make fun of those less abled than us, hearing a short bus joke would severely offend me. Henry will be riding one at some point this year. There's a fabulous campaign going on right now that is over all trying to end the derogatory use of the "r-word." Check it out and enlighten yourselves. My biggest fear right now is Henry growing up surrounded by insensitive kids who will make fun of him for whatever reason, and that if these social issues AREN'T resolved, I fear he may have difficulty making friends. I watched it growing up and it broke my heart. Too often you see grown adults make fun of less abled people and it sucks.

Here's another great website if you feel like learning a little more about autism in general.


I'm admittedly, happy that he qualified because it means he's going to get the help he needs in school straight away. It is the absolute best thing for him. That doesn't mean that as a parent, this wasn't one of the more difficult things for me to go through.

My name was always on the "ECSE Teacher line". In the however many parent meetings I sat in on and led during my time as an ECSE teacher, I never would have dreamed I'd see my name on that parent line. I was the teacher. I wasn't supposed to be on this side of the fence. It's hard, but no doubt easier on me because I'm a very, very informed parent. I know the ins and outs of how all of this works and that will forever be a positive for Henry in getting what he needs to be successful.




IMG_7593


We sometimes joke that we're paying for an education that I'm not "using" anymore at this point. Turns out, everything happens for a reason. There's no way we'd be where we are at today with this whole process if it wasn't for my education and work experience. Neither of us (with maybe the exception of the hair cut incident) would have any idea that these things were abnormal.

If you have any questions about anything, or just want to show some support, feel free to comment, facebook me or email me. I'd love to hear from you.

This child is more incredible than I can put into words. The tantrums can definitely be tough as the screaming and fits over not being able to feed the dogs, etc, definitely take their toll on us some days,  but he's still awesome in every way. He's smart, funny, affectionate, inquisitive, and has an incredible memory. Even with the current social difficulties, this kid has some mad skills and I'm so excited to see where that will take him in school. We love him with everything inside us and will do whatever it takes to ensure he's successful in school and beyond.  

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3 comments:

Kelly said...

WELL written Jenna! I'm sure it took a lot of courage and heart to write all this and you did a beautiful job! Henry is one special little boy!!! He has such a special place in Chris and My heart! It is amazing you could push and get him the help he deserves to succeed! Everything DOES happen for a reason! :)

Karen said...

You are a wonderful Mother! Henry is very lucky to have such a knowledgeable Mother. You have an advantage on this, you went to school for it.. I have no doubt,that Henry will succeed in the future. I also know how painful this process can be to go through. You are not alone, I'm here for you always.
Love
MOM

Amanda Kelley said...

This couldn't have beenn more perfectly written and of coarse it ended with a handsome photo!

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