Same but Different

A few weeks ago we sat down with the -ists at the school district to go over the results of all the evaluations they conducted on Bella.  They basically confirmed everything we already suspected: Bella is, in fact, very high-functioning autistic.  She is a year or so ahead in visual intelligence and memory, but a few years behind in social and communicative skills.  She’ll begin her new preschool program in the fall, a small class (10-12 kids) dedicated to the needs and abilities of children with a wide range of developmental delays, including autism.  The teacher is wonderful, and she’ll receive occupational, speech, and physical therapy several times a week during class.  She’ll even get to swim once a week at the local elementary school.  All of the -ists are absolutely great, adore Bella and sincerely believe she will flourish in this program.  She will most likely start kindergarten a year late, but they anticipate she will be able to attend her local elementary school in a regular classroom without the help of an aide.

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It’s all extremely great news, but it’s taken some time for me to fully process it.  It’s one thing to sit down and talk to a room full of professionals about the things that worry and concern you with your daughter’s behavior while she charms the pants off of them.  It’s another thing to receive a ten-page typed report detailing every single worrisome behavior you described and to read their professional analysis confirming that your daughter is, in their professional opinion, autistic.  High-functioning, yes, possibly Asperger’s, yes, but at the end of the day, autistic is autistic.

When Bella was just different — spirited, high-needs, etc. — it felt temporary.  In my mind, she wore her oversized personality the way a little girl wears her dad’s suit coat: too big and baggy for her right now, but over the years she would grow into it.  She’d always wear the coat, but eventually she would grow into it — in fact, it would end up fitting so well that people would be drawn to the quirky girl with a funky sense of style.

But that’s not exactly the case.  Bella’s not going to just outgrow this.  She’ll always wear this coat.  It might shrink a little bit, but it will basically stay the same size, no matter how tall and beautiful she becomes.  She’ll learn to pin it back, to roll up the sleeves, but she’ll always have to deal with that big, floppy coat.

I know that she’s going to get the best help we can give her.  I know the preschool program will be awesome for her, and the therapists are going to help her, and the outside therapy after school will help too.  Maybe one day it will be an asset to her instead of a hindrance.  But I’m selfish.  I don’t want her to be hindered, or have to struggle, or feel awkward or scared or confused in situations that she shouldn’t have to feel that way.  I don’t want her to be the odd kid in class that no one wants to talk to, that the mean girls mock to her face.  Even more selfish, I don’t want our family to have to go through such an upheaval — daily routines, habits, and schedules will have to change to accommodate Bella’s needs, therapy sessions, school schedule, etc.

In a way, I feel like a small part of me is grieving.  The future won’t be exactly how I imagined it would be for her.  It’s weird to feel sad about that, though.  It’s not like Bella is any different than she was before all of this — she’s has just as hard of a time staying out of the candy bowl in the cupboard today as she did six weeks ago.  On top of that, according to every professional we’ve talked to so far, she’s extremely high-functioning, and may just need a bit of help to “catch up” with other kids her age.  It’s just tough accepting that the odd behaviors you have grown accustomed to over your child’s entire lifetime aren’t going to go away on their own, and in fact mean something very different than you thought they did.  I know she’ll be able to acquire the skills she needs to be successful in life, but she’s always going to have to work harder at things that come naturally to the rest of the world.  It’s hard to accept that your baby will have to struggle all her life with something the rest of the world takes for granted.

But it’s fine.  No one in this family is anywhere near normal, and Bella is no exception.  Her brand of weird just happens to have a name attached to it.  I can accept that much, at least.  The rest will come in time.

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At least Bella has an excuse now for her weirdness.  I have no fucking clue about the other two.

Parenting an autistic child isn't easy, but it's also pretty amazing! These special kids are full of surprises. Read more about the daily struggles and lessons special needs parents experience when parenting a child with autism.

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This entry was posted in ambivalence, autism, Bella, Debbie Downer, preschool. Bookmark the permalink.

27 Responses to Same but Different

  1. Muriel Cote says:

    Bella is awesome and so are you.

  2. Jon says:

    This was beautiful to read. I’m sorry for the challenges she’ll have to face, but happy she has you as a mom.

  3. Melissa says:

    I love your blog, I’ve been following along for a while now, but don’t usually comment. Your Bella reminds me of my middle child. He’s not autistic, but has some pretty intense situational anxiety issues – and I just survived a similar meeting with his teachers. We enrolled him in kindergarten last year, on time, and he was one of the youngest kids in his class. It seems as though a LOT of people start their kids in K a year late. In fact, looking back, I really wish we had waited a year to start him, he might have had an easier time.

    • I am reading you loud and clear with the situational anxiety issues. You know, I was really having a hard time with the idea of holding her back a year in school, but I’m warming up to it. It’s not about sticking with a specific plan of how things “should” be — it’s about what will help her to be successful and happy in school.

  4. monica says:

    I thought this piece was so eloquent. good luck with the challenges that might be ahead and may the small blessings overshadow them. :o)

  5. You really hit the nail on the head.

    Nothing has changed, you’ve just been given a name and some new tools. If you didn’t have a name, you wouldn’t have the tools, you know?

    I know this is hard, but you’re rocking it. And she seems like an awesome little person. And the thing is, really high functioning autistic kids, kids who are on the spectrum but only just… they DO sort of grow out of it. Which is to say, they don’t change, but they are capable and fully able to learn to live with it even without all the help. And the help is great, it’s fantastic, it’s amazing. And it means that in a few years, she’ll have all the tools she needs to succeed. Without all the amazing help, it might take her getting all the way to high school. but you know her. And you know she’s going to get there.

    Because you’re a smart and awesome lady, and you obviously only make kids who are going to be just that when they grow up.

  6. Lynnette says:

    “No one in this family is anywhere near normal, and Bella is no exception.”
    Thank god, because I love all you rabble-rousers and your girls- all of them- will flourish. Probably none of them will do it in the way you hoped. That’s what kids do. Their own godamn thing. Belleis Belle, is Belle. She was extraodinary before and she is extraordinary with a dignosis now. Kinda sucks, but, and listen to me here Janel- they have you and Rob for harbor and for home. You got this, and if I ever had kids there are only two people on this earth I would trust them with if I died-you and Karen.

    • If you died, Karen and I would have to move in together Full House-style and raise your kid along with ours. I’m not sure I could deal with living on a Canadian farm, though. She might have to bite the bullet and move to the suburbs, but maybe the Pacific Northwest?

  7. annie mccourt-makaron says:

    I remember going through this same routine with my daughter. My mind playing a constant game of, “is she? no she isn’t. but, maybe?” Until we got a diagnosis. Give yourself a chance to grieve and then recognize the fact that everybody has to carry their own bag of hammers– and our girls will clobber the world with theirs!!!!

  8. Myriam says:

    “At least Bella has an excuse now for her weirdness. I have no fucking clue about the other two.” That, right there, is awesome. My parents are a “week-end” home for 3 kids at a time, every week-end. Most of the kids are mentally or developpementally challenged, not physically. What I’ve noticed is that many of the problems those kids face are “children” problems, not “label” problems. They act out, have poor impulse control, or some other issues, but it is the expectation on how they should behave, and how to resolve a situation that will change. With a typical child, you give them a certain set of tools, with non-typical kids, it is a different set of tools. Good luck, your daughters are in good hands. Ask for help when you need it (for any of you)!

  9. Arnebya says:

    It is nothing short of utterly amazing how we picture/want/try to shape our kids’ futures. And then, bam! Shit happens for which we neither wanted, expected, nor built in time/skills/patience/ok I can handle this. What I can say without a hint of a doubt, though, is that Bella will thrive. She has you. She has your family and your advocacy and clearly professionals behind her. She. Will. Thrive. It won’t be in the neat little, sticky fingerless, clean faced way you imagined (you imagine them older and clean too, right? In your visions? Your kids are clean? I CANNOT BE THE ONLY ONE WHO HOPES) but it will be right for Bella.

  10. Teacherbug says:

    Wow, wow, wow! As a former special educator, and now proud Kindergarten teacher, this entry really hit home.
    The IEP meetings always killed me. Sometimes I wanted to just run over and hug the parents, and other times I wanted to scream, “Don’t you get it, this is a big deal!” From following your blog and now reading this I want to give you two thumbs way up. You’re doing an awesome job acknowledging, but not being undone, by the A word (Autism!). Best of luck with everything, I’ll be thinking of all of you! 🙂 And don’t be scared, I like to think we’re all on the Autism Spectrum just at different frequencies…Keep on keeping on being a Super (hilarious) Mom!

  11. Jess says:

    This comment will probably ramble, so for that I apologize ahead of time.

    My third kid has issues. No medical diagnosis, no official Thing. She’s been tested and evaluated up and down the wall for the last three years (she’s 3.5). It’s been fun.

    Because she has no Official Medical Diagnosis she no longer qualifies for PT and OT and Speech outside of the services she gets in her special needs preschool class. Which, she started going to this spring. The entire process is exhausting and never gives proper answers, but rather more what-ifs and maybes and possibly-s, but never qualitative information.

    Liv doesn’t walk. She’s 3, and she can’t walk. That apparently doesn’t qualify her for PT outside of her special needs class, since there’s no One Thing we can label her with. She doesn’t talk much either, and until a year ago, it was impossible to hold her. She hated being touched. Her sensory issues were sort of inexplicable.

    I think the hardest part of the whole thing, as a parent, is the abyss of unknowns. When you have a kid, you assume they’ll grow up and move out and get married and have a life. When you have a special needs kid? NONE of that is a viable assumption. You just don’t know. You have no idea if your kid will ever be typical, high functioning, capable of going to a football game on Saturday night and making out with a boy in the backseat of a car. My husband and I don’t know if Liv will be with us forever, or if she’ll have a life of her own. Having a child with a VISIBLE disability seems so much easier to me. Having a child who looks completely normal but has a whole slew of invisible struggles? It’s hard sometimes.

    In spite of the unknowns, she’s ours. She’s ours, and her special has wiggled its way into our hearts in a way that I can’t describe. Liv may be my favorite kid., although I’d never tell the other three that. She’s just so awesome. Her needs aside, she is so effing fantastic.

    I have a tattoo on my back that says ‘fragile hope’. That’s for Liv. Because hope, in regards to our special kids, is such a fragile, VITAL thing.

    Okay. I’ll shut up now. I never leave comments like this, but I’ve been there, where you are right now. And I just wanted to let you know that.

    • Jess, thank you so much for sharing. Everyone’s situation is so different, and sometimes I feel guilty for feeling sad over Bella’s diagnosis, because relatively speaking, it’s not that serious. I mean, it is, but it could be so much worse, and we’re actually insanely lucky that she is as high-functioning as she is. But I guess like you said, no matter what the diagnosis, it’s the “abyss of unknowns” that scares you the most. All the “what if?”s and “why?”s can make you crazy. I don’t know what to do with those questions yet, except to ignore them because there’s no other constructive thing to do with them, and ain’t nobody got time for non-constructive thinking when you’re trying to keep up with someone who’s constantly trying to jump up and over the baby gate at the bottom of the stairs.

      You keep fighting for that sweet little girl of yours. Thanks so much for rambling, Jess.

  12. If you have time, read this. She’s a friend of mine, a co-worker, and she’s in a similar place though her daughter is just small: http://www.teenyandthebee.com/2013/04/nostalgia-for-future.html

  13. Rox says:

    I’m curious – it’s great that you’re so willing to let her start a year late (screw anyone who judges that – you’re doing what you see will be best for your kid right now) but where she’s advanced from a cognitive perspective, will you also fight for her to get gifted programming or advance a grade if the time comes that she is bored to pieces with her class material? Speaking as someone who grew up with Asperger’s and hits the ceiling on IQ evaluations this was a huge issue for me in school – they didn’t want to focus on my academic achievement and potential when my social intelligence was less than ideal. But the research now is showing that generally speaking gifted children need that exposure to their intellectual peers to avoid a whole slew of self-esteem and self-confidence issues regarding their intelligence later in life. Just wondering if this is something you’ve given any thought yet.

    • Janel Mills says:

      Hi! It’s funny that you ask this question, because we had a person from our school district call and ask us about the talented and gifted program for Bella (without realizing she is autistic), because her test scores are through the roof. We asked at her first kindergarten conference if she was doing so well academically because we held her back a year, and she’s just good at the material because her teacher did such a great job preparing her for kindergarten, and her teacher said, “No, I don’t think so. I think she’s very, very smart.” Her team suggested letting her attend the first grade reading group last year, and although I worried about Bella not handling disruption well, she did even better with the more challenging material. So yes, you’re absolutely right — our challenge with her will be balancing her need to develop socially with her need to be challenged academically.

      Also, PLEASE keep reading, because you sound fabulous and I love your comments. 🙂

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