Isabella Grace-ious

Isabella Grace
The story of the girl who changes my life

Wednesday, August 17, 2011


I had a doctor's appointment today, and so for one of the first times since I got Isabella's confirmation of Kabuki Syndrome, I was alone for a few hours with my thoughts.

I have a lot to update on, and I have been planning on writing a blog post all week about what is going on with Isabella lately, and how wonderfully she is doing with all of her therapies and how excited she is to start school. I also have a whole post worth of updates on how her follow up with the geneticist went last week, and how emotionally wrecked I have been lately.

But today has been rough. And so, those posts will have to wait for another day (week?!) because today I already have two separate issues that are killing me inside.

While I was driving to my appointment today I thought I would be emotional, and I even allowed myself to have extra time before my appointment in case my thoughts from the past few weeks made weepy. But as I was driving, all I could think about was how beautiful it was out, and how lucky I felt to have my kids, and how much I couldn't wait to get home to them so we could have a fun afternoon while daddy was home for the day.

I got to the doctor's office and told the woman at the desk my name to check in. She looked at me funny for a minute and said "you are my neighbor." She didn't look familiar to me, so she explained which house she lived in (a street over from us) and how she was the one who ran and got a band aid for us one time when we were taking a walk and Isabella fell and skinned her knee. I remembered her then, and I remembered how after she got her the band aid and a wet cloth to clean up her scrape I walked away thinking about how wonderful it was that we live in a community where neighbors truly help one another.

The woman and I started chatting for a minute once I realized who she was. She asked about Isabella, and how old she is. When I told her she was nearly 5, she asked if we were going to be putting her in preschool this year. I told her yes, that actually this will be her third year of preschool already. She said she also has a daughter who will be five the month after Isabella.

When I asked her if she too would be starting preschool soon, she huffed and gave me a pouty face.

"Yeah, I guess," she told me.

"You aren't excited about her starting? I bet she will love it!" I responded.

"No, I want her to start" she said, "but she will be in the Tri-County preschool program. You know. The one where all the kids have those IPA's or whatever."

I knew what she meant. But I acted like I didn't. "IPAs?" I asked

"Yeah, you know. The special ed kids?"

"IEPs?" I offered.

"Yeah, that's what it is. IEP. I'm just not really excited that she will be in that preschool."

IEP: Individualized Education Program. An individualized plan to provide for the educational needs of children with disabilities.

She doesn't want her kid to be in the same classroom as "those kids".

I can't believe I remained as calm as I did looking back. I could feel the blood rushing around in my ears and I just wanted to go sit down in the waiting area, but I knew I would regret not saying something to her about it later.

"What are you worried about with her being in a classroom with children who have an IEP?"

"Oh, I don't know. I don't want to seem like she's above them or something. I just don't want her to be bored," she replied.

I told her that I highly doubted that her daughter would be bored in any preschool classroom, as it is preschool after all. I told her that my daughter is also in a classroom that is integrated with kids who both have and do not have an IEP, and as a parent who goes to every field trip and every school event, that I couldn't believe the progress that I observed every kid in the classroom had made since Isabella started school, weeks before her third birthday.

I told her that the IEPs are INDIVIDUALIZED for the student who needs them, so that the entire classroom would not be affected by the special needs of one child. I told her how lucky her daughter is to be able to be in this particular classroom setting, as she will learn empathy and compassion for others, and will likely not even think the differences between herself and her classmates amount to much of a difference at all. I told her how wonderful it will be for her to get to know and feel comfortable around kids who have special needs now when she is so young so that she can learn not to fear or avoid them later.

The woman smiled and said "oh, thanks for the information." But I don't think I reached her at all.

So I sat down in the waiting room and have since spent the entire rest of the day dwelling on the fact that I was blindsided by this. I was sure that I had thought of every possible scenario where Isabella might be discriminated against in her future, and somehow I didn't even think that it would be the PARENTS of the children her age that wouldn't want the likes of her to be included in the classroom. I know that kids might make fun of her and teachers might get frustrated with her and that she might feel different just because she needs an aid or therapists throughout her schooling, but I failed to realize that we might have an entirely separate fight on our hands when it comes to having her mainstreamed into a regular classroom at all. I know that other parents cannot prevent her from being in a particular classroom, but if they have a strong enough opinion about it, they will certainly influence their children's view on accepting, including, embracing and helping my child, and many other children who might be different from them. And this makes me incredibly sad. I keep trying to remind myself that we are in the times of forward progress, and to thank heavens that we aren't living 50 years ago because doctors would want to institutionalize many kids who have special needs, but when things like this happen it makes me think that maybe we aren't really moving forward so much after all. I mean, people would say that they are for equality and justice for all, but when it comes down to it, that thought gets negated by the fact that their kid might have to share a classroom with a child who is physically, or worse: mentally handicapped.

To make matters worse, when I got home I had a voicemail from this woman telling me that the results of my not so routine mammogram were slightly abnormal, and could I please call her back. So I had to rely on her to give me information about what is and isn't normal about my scans, and had to rely on her to tell me "not to worry too much" while I wait 6 months to get another Xray and ultrasound, and to "try to enjoy the rest of my day."

Coming from her, it wasn't much consolation.

I am afraid for Isabella. And I am afraid for me.

UGH!! I dread the day when our girls start kindergarten together and she realizes that my kid is one of "those" kids that might make school boring for her kid. It seems like we are already opening the doors of kindergarten with our arms swinging in battle, and we haven't even started preschool this year yet. I hate realizing that most of the suffering that Isabella and our family will endure will have less to do with Kabuki Syndrome itself and more to do with society's standards for what is acceptable, normal, lovable and desired. When it comes to having a definite label for her, I am worried that it will now be a double edged sword. While it might open the door for opportunities in services for her (which I am seriously questioning will actually  happen), it might actually place her yet another step away from "normalcy" just because there is a name behind all of her differences.

There is a quote by Kathie Snow in her book Disability is Natural (which I have not yet read) that is really powerful:

"Your belief in your child and his potential has a greater influence over his success than his disability."

Can you imagine how influential to success it would be to have society believe in my child and her potential?


  1. Having a child with a disability changes your perspective. So much so that I can't really know anymore what I would have been like if my child had been born "normal". Would I have been judgemental like this woman? Not wanting my kids in a schoolroom with kids with disabilities? I honestly believe I wouldn't have been that person. But I guess I will never know. I do think it is highly likely that if my child had been born "normal", slept well, met milestomes on time or ahead of time etc that I would have had some degree of smugness, and believed it was all down to my wonderful parenting techniques. Haha. Anyway I digress...what I do know is that my perspective on disability has changed now. Before Sophie came into our lives, children with disabilites were completely "other" to me. Intellectually I understood that underneath it all we were all alike. But in some ways, in my emotional headspace, people with disabilites existed in a kind of seperate world to me. Now I know, really KNOW in my heart and soul, that children and adults with disabilities are like those without disabilties - with hopes, dreams, desires, likes, dislikes etc. Sure, our kids have extra challenges, and often different ways of processing and seeing the world. But they are really just kids, just little humans with all our human frailties and miraculousness. I don't think I could have really really understood this without having Sophie in my life. I liked to think I understood this. But I wasn't even close. So maybe that is where your neighbour is at.... Ignorant. It is sad, this divide between "us" and "them", but we can't take back what we know, and they can't know what they don't. I've spent a lot of time wanting/ needing family and friends to truly understand what we are going through. But at the end of the day they can't. Hopefully this woman's perspective might change when (if she actually gets to know someone with a disability. Who knows, maybe Isabella might end up being the vehicle for that lesson for this woman!! :)

    Disability is Natural is a good read. Definitely controversial, definitely thought provoking. I really liked the Chpater where she discusses going into the classroom to talk to the kids. You'll know what I'm talking about when you read it. It was interesting to me that when I offered up this information/ suggestion to some other Mums who have children with disabilities they got quite angry about it and thought is was a terrible idea. So as I said, controversial. I haven't actually read it cover to cover yet. Have read about 2/3rds of it - the chapters that I was interested in at the time. Will be interested to hear your thoughts when you have a chance to read it.

    If there is any chance of getting seen before 6 months - do it. Hopefully it will be benign, but I'm sure that 6 months of wondering and waiting won't be good for anyone. Look after yourself.

  2. Kath,

    Thank You! Sometimes I need a comment just like yours to put everything back into perspective for me. I get so fired up with the "injustice" of it all, but you are right- sometimes you just can't know what you don't know. And I know that my anger and frustration and hurt feelings might get in the way sometimes of the big picture and the more important things: to educate others on the value, beauty, and potential of those with special needs. But who would really want to pay much attention to a hot headed blubbering defensive mother bear? :)

    No waiting 6 months for me... I have never been one to just wait and see when more could be done (lol) so I have put a call in about seeing a surgeon about a biopsy. I like to stress myself out about life's other events too much to waste energy on worrying about my own health for six months!

    Thank you for your words of wisdom and your friendship... wish I could meet you for real. :)

  3. I am often the one being a "hot headed blubbering defensive mother bear". But after a few glasses of red I'm usually more philosophical :)

  4. That's a tough one. Kathy, I get it...and you said it SO well. Before my babe special needs kids were 'other' to me...they just existed in a different space and world. I remember thinking through this a lot when I was pregnant with Lamp...thinking that she will be completely normal to us and we'll be so used to seeing her the way she is but other people will be seeing her for the first time every day of our lives and I need to give them the benefit of the doubt and remember we had our first reactions and impressions too...

    But Mikaela, serious props for not just blurting out (like I would have done) Oh really, cuz my daughter is actually one of those special needs kids...I would have still been nice to her, but I would have liked to see her squirm a bit. That's just me. :)

    ps--so I want to start doing a special needs spotlight on my blog and was wondering if you'd like to be a part of it? I haven't actually done much more than thought about it, so I don't know when I'd roll this out, but if you're interested let me know. I envision it being something where SN families can talk about their kids, their particular special need, thoughts and feelings and in the end create more awareness for those "other" families out there. :) Let me know!

  5. Wow... I am afraid i would have totally went off on that women and blamed it on my crazy hormones!! I have a million things I'd like to say to her. And I hope every things okay for you and you get your follow-up soon and put your mind at ease! good luck!