A few months ago, an online friend of mine enrolled her daughter in a preschool that mixes typical children with special needs children in the classroom. She shared that knowing about Chee and her special needs/typical preschool experience made her desire that same kind of class for her daughter Lane, even though Lane doesn’t require any special services. I was really glad to hear that our experience had influenced Lisa in such a positive way.
Prior to having a child with developmental delays (aka Special Needs), I was entirely unfamiliar with the subject. I didn’t know anyone with a child receiving special education. Certainly I never expected my own child would be one. About 3 months before I contacted our school district about their preschool program, someone mentioned to me the idea of the public, special needs preschool, and I remember saying, Oh, she doesn’t need that. She’s not disabled.
I really believed that.
I thought special education was for the disabled – which to me meant physically and/or mentally handicapped. Not for a kid who had a language delay or speech delay. It never occurred to me that her significant delay in fine motor skills alone (-2.67 standard deviations from the norm) would qualify my daughter for special education. It wasn’t a matter of denial as much it was a matter of ignorance.
Prior to my own child’s experience with an IEP, I only knew one person who had a child with an IEP. I’ll be honest and admit that I assumed she had one because she needed help due to not being very intelligent. That’s what I thought IEP meant - not very smart, needs extra help. Again, a matter of ignorance. And stupid assumptions.
Obviously, I am ignorant no more.
I’m very open about Chee’s disability. This was not always the case.
I abhor pity. It’s why I initially kept quiet about Chee’s early speech therapy to friends. I couldn’t stand the thought of anyone feeling sorry for me. It’s why, at the time, I didn’t share my struggles with infertility either. After the fact, no problem; but during, no. I didn’t want anyone thinking, Poor dear, she can’t get pregnant.
I no longer hide from any of my friends or acquaintances that she has Sensory Processing Disorder, and a Language Delay, and that she’s behind in her Fine Motor skills. I openly share that she is in Special Needs Preschool with an IEP. Part of my reasoning is that I assume most people are ignorant about disabilities unless closely connected to someone with one. And I assume that those that are ignorant, like I was, probably make false assumptions, like I did.
When I think about my own earlier assumptions about IEPs, I cringe.
What if people think of my daughter as less capable, less intelligent? I know better now, and I’m burdened to enlighten others.
Chee’s potential for development is huge, she has already progressed tremendously, and will continue to. Yet, she might still need an IEP in Kindergarten in two years. Maybe First Grade. Maybe beyond. We don’t know.
The Mama Bear in me would like to prevent as many false assumptions about my girl as I can. I know, it’s not possible to enlighten everyone. No matter how open I am, there are still individuals who will think that she is slow or not very intelligent simply because she is in special needs preschool. Because she has an IEP.
There are probably friends, acquaintances, distant relatives in my life right now who do not know Chee, who maybe have only read about her, or met her a few times, who think of her as that way. Whatever that way is. Perhaps they feel sorry for me because of what I “have to deal with” (there’s a line I’ve heard too many times – “I could never do what you do.”).
Chee’s disability is not about me though. If friends or acquaintances wish to pity me because of Chee’s challenges, so be it.
If being open about her challenges, about her IEP, creates greater understanding, and more empathy, than it’s worth it. It’s worth it when a friend says, Because of you, because of Chee, I’m sending my daughter to a blended preschool, something I wouldn’t have considered before.
It’s worth it to me for the people around us to recognize that disabled doesn’t have to mean less intelligent, it doesn’t always mean uses a wheelchair. IEPs aren’t for kids who are slow.
In the not too distant past, my goal was to get Chee caught up and more like her peers. And in some ways that is still true. I want her social skills to develop and her language skills to catch up. But not so that labels can be removed or avoided as was my earlier reasoning.
No, now it’s for her. Life is better with friends with whom you can share your feelings.
Relationships are the stuff of life after all.
So I will continue to be open about Chee. By changing my attitude about sharing her disability, we have the opportunity to change others. To impact our small corner of the world.
I’ve always been inspired by Ghandi, who said that we must become the change we want to see in the world. I’m no Ghandi, but I think this is what he meant. Just a little bit maybe. Either way, it feels right.

13 comments
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August 24, 2008 at 7:41 pm
goodmum
I’m glad you have peace with this. As for me, I still struggle with it every day. I struggle because I’m afraid people/”friends” will think I am making excuses for my kid. Making excuses for abnormal behaviour. It’s hard. I don’t want to “make excuses”, but I also don’t want to have people judge my kid because there are some parts of his behaviour that he can’t control. More and more though, if he acts out, I can see WHY and relate it to the fact that he’s either been overstimulated or treated in a way that is really uncomfortable and just plain hard for him. So I HAVE to make sure that people understand.
Thanks for the reminder that it’s ok for my kid to be “different” or “that way” or “special needs.” Reminders are necessary and helpful.
August 24, 2008 at 9:03 pm
Kristan
WOW what a post. I think you’re absolutely right about Ghandi: this is what he meant.
August 24, 2008 at 9:46 pm
Jordan
This is beautiful, goodfountain. What you are doing will help so many families as well as your own. I have so much respect for you. Oh, and I use that Ghandi quote as part of my signature in all of my emails. I love it.
August 25, 2008 at 12:12 am
drama mama
Well done, Mama Bear.
August 25, 2008 at 1:37 am
Lisa
:kisses:
When I’ve told people that Lane will be going to her preschool, I’ve had people ask me in that pitying tone…. “Oh, does she need services?” and when I say No, they say something like, “Oh, good.” I never quite know how to respond, so I just let it lie.
August 25, 2008 at 1:38 am
Lisa
Oh, and I have a Gandhi quote on my fridge, but not that one.
Mine’s “There is no god higher than truth.” It seems my fridge is a little liberal-minded.
August 25, 2008 at 2:34 am
leechbabe
This is something I struggle with often.
Information is a weapon, giving people the correct information empowers them to help my daughter in the best way possible. However misinformation can do more harm than good. Not keeping people fully informed can lead to some fairly horrible situations.
I worry that I might give someone information that they then use incorrectly or change slightly before passing onto another person. Sort of like how the words change in the game Chinese Whispers.
We’ve gone down the route of being as open as possible with everyone. I tend to write information down to stop it being confused. An example of that is todays entry at my blog about Church and Sunday School and the letter I wrote to the teachers.
In the end though I have to face the unpleasant truth that no matter how much I try to keep an open positive flow of information, some people out there are simply going to judge and be nasty because that is who they are.
And the fight against ignorance continues.
Cheers
Marita
August 25, 2008 at 8:44 am
Korta
I struggle SO much with this, too… being out and feeling the need to explain to someone trying to interact with my daughter that she just doesn’t understand because she has a learning disability…then thinking I shouldn’t make excuses… then thinking it’s not an excuse, really…then wondering if it IS an excuse, and she COULD do it if I didn’t leap to defend her all the time…added into the worry that the second I mention any learning disability people will stop looking at her as the bright, fabulous girl I know, and only see “oh, that autistic girl” (I’ve only barely started admitting to MYSELF that Hyperlexia is a form of autism, even though I know now that autism has so many ranges, and it doesn’t change who she is…)
I think I have a lot of work to go on this one…*sigh*
August 25, 2008 at 9:02 am
kristen
This is really a thought-provoking post. I struggle with this, the idea of who to tell and why (or why they may need to know). As my son gets older, I find myself more protective, less likely to share. I don’t know if that’s the best way, but it feels right.
When he was younger, sort of preschool age, I was much more open with people—from the parents of other kids to the check out clerk at the grocery store. Back then I didn’t feel like he was listening and soaking in every word I said. Today, it’s a little harder. I’m a little more subtle, he’s a little better at coping, and I try to take each situation as it comes. I find it’s not always necessary and sometimes even counter-productive to explain his diagnosis.
As I write this, I think this is one of those things that will change again over time. My “less open” approach today could easily shift into an attitude of sharing more as my son gets even older still.
August 25, 2008 at 11:40 am
Good Fountain
Kristen, I think you’re 100% right … and my “more open” approach may shift to “less open” as Chee grows older and I start to feel a different kind of protectiveness. Her awareness of what I’m talking about seems to be growing daily.
We have to always evaluate and do what feels right *at the time*.
Parenting is such work in progress, no?
August 25, 2008 at 9:18 pm
Patty
Good for you!! I know what you mean about preconceptions. I went to grad school and got a master’s in education and had to take a Special Ed. class. I remember sitting in that class talking about IEPs, parents’ rights, etc. and not thinking much about it. Fast forward about 5 years and there I am sitting in my first IEP feeling terribly overwhelmed. And to be frank, a bit uncomfortable that my son was now labeled “special ed.” Every time they used that term, I cringed. Since then, it has gotten easier for me to talk about Danny’s delays, but I still am hyper sensitive to the possibility of others judging him.
I like to educate people on SPD, but I can see where Kristen is coming from, as well. Sometimes I don’t say anything because I don’t want to make people automatically think something is wrong with him. It’s a fine line.
August 26, 2008 at 8:42 am
Tonggu Momma
Well done, momma bear!
I am very open about the Tongginator’s SPD, especially at adoption events, because it’s as common among internationally adopted children as it is among preemies. So I share. I hope to be the change, as you and Ghandi believe, but – like Kristen – I do guard my words while the Tongginator is around. This post has made me think.
The Tongginator doesn’t have an IEP. I’m not sure if that is a good thing or not. This more challenging year of preschool will definitely tell us much. Her fine motor skills are delayed, but I’m not exactly sure by how much. It’s something I plan to really focus on and talk with her teacher about.
One of my friends is very, very quiet about the issues her girls face. I’ve always felt that it comes from a place of shame – not about her girls, but about herself because she, too, grew up with some learning challenges. I don’t think she’s quite worked through them.
December 2, 2008 at 9:35 pm
asha
HI
I am so happy to come across ur website , i faced infertilty ,still birth , strict bedrest in the hospital and gave birth to a 27wker.U might know what happens next . 5 years of my life has been hell.along with that the NICU discharge program was no good so , missed out on her developmental evaluations .AT 2 now I did research on my own as usual and discovered she needs OT for SID .I want her to goto preschool , am in san diego but in google am not able to find any school .PLease can you tell me how you go abt the search .
You are an insipiration to me on so many things …any more and I will cry …