The Many Different Reactions of People

I find it amusing watching how people react upon mentioning that my daughter has a disability. Well at first I felt very defensive, sometimes ashamed… but now, even if I still lie about her age to most people, I take no offense in the oftentimes off reactions of people. Its sort of like being a part of a social experiment... sometimes shocking, sometimes dumbfounding, sometimes awkward, but most times amusing. Here are some of my classic experiences…



The Awkward Silence

Lady: Oh, look a tiny baby. How old is she?
Me: She’s 10 months.
Lady: No! She can’t be 10 months. She’s too small. Is she a preemie?
Me: No… she has a syndrome
Lady: Silence…. A really long and awkward silence.



The That’s Lucky

Most of the people in our church community are aware that many daughter has special needs. They may not know exactly the name of the syndrome she has, or the many complications that came with my Isabella having the WHS, but they know that my daughter has special needs. So it’s not really a surprise is a curiosity will propel someone to actually approach me to ask about details….

Lady: So you’re daughter has a disability?
Me: Yes. She has a syndrome.
Lady: I heard she was just at the hospital and was in the emergency room.
Me: Yeah, she had a seizure.
Lady: Oh, I’m sorry…We prayed for you.
Me: Oh thank you for all your paryers.
Lady: You’re lucky do you know that?
Me: I guess so.
Lady: Watch it. You’re going to win something big.
Me: Like in the lottery or at the casino?
Lady: Yeah. Cause having a baby like that is lucky.
Me: Oh I hope you’re right.
Lady: Watch it and you’ll see. That’s lucky.



The Is Something Wrong With Her

Lady: Oh, look at this small baby. Is she a preemie?
Me: No… she’s just small.
Lady: Is something wrong with her?
Me: No, nothing wrong with her…. She has a syndrome, but nothing is wrong with her.

The lady then, with that pity look in her eyes and a small smile on her lips, touches me on the shoulder, touches the baby’s head, then walks away.



The What’s Up With Her Eyes

I was at the photo store picking up a set of pictures. I was reviewing them on the counter when the lady behind me goes

Lady: Oh look at those baby pictures.
Me: Smiled
Lady: Who’s baby is that? What’s up with her eyes?
Me: She’s mine. What do you mean what’s up with her eyes?
Lady: Oh, I’m sorry…. Then she immediately walked away.


What I really wanted to say was…

Me: What?!? Her eyes are not proportionally spaced enough for you !?!



The She Looks Like an Elf

I brought the baby with me to work one time. Most everyone at work know that my baby has a syndrome. Not everyone know the details, but nonetheless its common knowledge at work that my baby is a special needs baby.

Co teacher 1: Oh look at her. She’s looking around.
Co Teacher 2: She seems aware of what’s around her

Isabella then smiles, moves her hands around and kicks

Co teacher 3: Oh look she’s smiling.
Co teacher 4: And she’s looking at you
Co Teacher 5: It seems like she knows you.

(Duh? I’m her mom?)

Co Teacher 6: She’s just really happy and smiling.
Co Teacher 7: Yes she does.
Co teacher 8: She’s so cute.
Co teacher: 9 She looks like an elf!


I know they all mean well and most of them just probably don’t know what to say, or how to react but wanted to say something. I’m sure when they saw my Isabella, she was not what they were expecting her to be. They were probably thinking that my baby is a non responsive vegetable, and while I do respect all that, and honestly take no offense at it, I was surprised with the “elf” comment.



The She’s Not 15 months

So, this follows the story of when I brought my daughter to work…

Co teacher 1: So, how old is she now?
Me: She’s 15 months.
Co teacher 2: No, she’s not 15 months?
Me: (I’m thinking, Are you seriously saying this?)
Co Teacher 3: Is she really 15 months?
Me: Yes. I’m sure. (Are they doubting me… the mommy? )
Co teacher 4: She looks more like 4 months.
Me: Yeah… she’s the size of a 4 month old. But I’m sure she’s 15 months now.

What I really wanted to say was…

Me: Yeah… remember? About 4 months ago I had a baby? Remember that?


This whole conversation with my co teachers kinda surprised me really coz I what thought was common knowledge, I guess isn’t really “common”.



The Don’t be Frustrated

We work with many doctors/specialists. Out of the many doctors we work with, we only met one who has actually met or seen another child with WHS. This one time that we had an appointment with him, our conversation went like this...

Doctor: Tell me the things she can do now.
Me: She rolls, she puts her hands together, she outs her thumb in her mouth, and she can sit supporting herself with her hands.
Doctor: Does she smile?
Me: Yes she does… she smiles a lot and at everyone.
Doctor: (To Isabella) Are you going to smile for me little princess?
Me: Go Isabella, smile for the doctor, come on… come on.

Isabella does not smile.


Doctor: That’s okay. She’s probably smiling and you just don’t know it because of the down turned mouth that WHS kids have.

Me: Oh, but she does smile and you can really see it. Come on Isabella, smile for the doctor.
Doctor: That’s okay. You don’t need to be frustrated. I’m sure she’s smiling right now, but we just can’t see it.
Me: (I’m thinking… but I really do see it and its an obvious smile, and I’m not frustrated because she does smile and, no… I don’t think she has a prominent “downturned mouth” that I can’t tell if my own daughter is smiling).



And this is my most favorite…
The My Condolences

I have not spoken with this friend for a loooong time. I was busy with my pregnancy with Isabella, and then dealing with complications towards the later part of the pregnancy and then the long list of things right after she was born… when we finally got the chance to talk, here is how our conversation went…

Friend: Hey. I have not spoken to you in a while. I hear all these things through the grapevine about what’s going on with your daughter, but I was not really sure until I actually get to talk to you. So how is your daughter?
Me: It’s a long story. (Then I started choking on tears). She has a syndrome and she has all these complications. Underdeveloped brain structures, fluid in the brain, brain cysts, liver cysts, hearing loss, small kidneys, acid reflux, kidney reflux, cleft palate…. It just seems to go on and on…=
Friend: So how are you?
Me: I’m coping… I’m trying my best.
Friend: Well… my condolences.

Now this got me thinking…. Is my condolences something you say when you send your sympathy in general, not necessarily, specific to someone passing away?... I’m confused.

15th Month Update and Annual IFSP

We had an annual IFSP for Isabella just recently. Right before the meeting, I found ,yself reviewing the IFSP from a year ago and the one done 6 months ago. For both IFSPs no goals were met and her developmental level at 9 months was that of a 0 to 3 month old. I do feel that Isabella has made great progress developmentally, however most of the progress she makes are the tiny steps that leads to the major goals that the IFSP team has developed. While reviewing, I felt that none of her goals were met and my perception is that her developmental level at 14 months was that of a 4 month old.

At the IFSP meeting, all the service providers were there. We briefly discussed birth and medical history and the type and frequency of services that she receives. Then we proceeded to discussing what is current in terms of Isabella’s development.

• Vision is within normal limits as per last vision check up.

• Suspected hearing loss on both ears. With the right ear being on the moderate to severe range and the left at mild to moderate. Although this results are inconsistent with a sedated ABR done April 2010, where the results indicated the she has normal hearing in both ears.

• Cognitive skills are at the 3 to 6 month range. She uses her hands to explore her mouth, plays peek a boo, and her interest on toys that make sounds are emerging.

• Language skills are at a 3 to 5 month range. She shows interest in music and sounds. She also laughs when we play with her. She coos using “Mmmm” sounds.

• Social Skills are at the 3 to 5 month range. She shows interest in people and likes to watch them. She likes to be in constant sight and hearing of an adult.

• Gross motor skills appear to be at the 5 to 6 month range. She rolls both sides, hold her head up, and with assistance can support herself sitting with extended hands.

• Fine Motor skills are at the 3 to 6 month range. She can track objects, grasp toys when placed on her palm, put her hands and fingers to or in her mouth, and clasp her hands together.

• Self Help skills are at the 3 to 6 month range. Her cleft palate has been repaired and is being seen by a feeding OT. She is tube fed and takes in semi solids by mouth. She licks her fingers and will lick a toy when placed near her mouth.


She did meet 1/3 goals benchmarks that the team has developed (attention to a variety of stimulation, After the report, I felt that our estimation of Isabella’s skills were in the range, most likely the average level of the skills noted above. Old un-met goals (crawl, sit without support, grasp/pick up toys or small objects, and transferring objects from one hand to the other) were continued, and new goals were developed (play with toys, react to music by cooing, babble, pivot her body in prone, sit momentarily leaning on hands, and transfer objects from one hand to the other) .

We left the meeting feeling good that our daughter made progress. And I actually cried because she is moving forward, slow it maybe be, at least she’s moving forward.

However, when I found myself reading the report, I found that not only did they write where Isay is at developmentally, they also wrote in percentages how delayed she is… 79% delay.  79 out of 100.

I’m aware of the reality of it… and I’m still happy with what progress she’s made… but it hurt seeing that difference.

I gotta keep looking at the have's and focus on the positives.

To read about Isabella's development last month, click here