Update on my daughter

[_MsJack]

So, an update on my daughter:

My daughter has velo-cardio-facial syndrome. This flies under a lot of names in the medical community (22q11.2 deletion syndrome, DiGeorge syndrome). It's fine if you've never heard of it; I hadn't until they told me my daughter had it. We are very fortunate in that we've known about this pretty much since birth. She's currently 6.5 years old and in the 1st grade.

She had an evaluation for Asperger's and autism a few weeks ago, and I got the results of that today. The good news: essentially, she doesn't have either. She does have a few signs that test in the autism range, but other signs rule out autism. She badly desires and seeks after social interaction, for example, although she often does not understand social cues correctly.

I thought this was an evaluation for ADD and ADHD as well, but apparently not. I have to set that up now, and it could take a while.

The bad news was her IQ, which the person doing her evaluation put at 70. This puts her just barely above "intellectually deficient."

When my daughter was diagnosed with VCFS as an infant, I asked one of the doctors we met with to tell me honestly what her cognitive outlook was, and to not sugarcoat it. He said that he has met people with VCFS who are of average intelligence, and people with VCFS who are below average intelligence. But he'd honestly never met someone with VCFS who had high intelligence. And I said, "Okay. I can work with that."

I guess that, since then, it's always been my hope that she would make it to average at least. So this is kind of hard news in that regard, though not unexpected.

I love my daughter the way she is. I'm so petulant and impatient at times, what I really fear is my own ability to be a good mother to a child with her needs. I went through childhood with people unable to shut up about how smart I was. I picked most things up very easily. I was in the school district's gifted program when I lived in Anchorage (although I was probably the dumbest kid in the program). It's hard for me to sympathize with those who need so much help to learn.

I know it's probably stupid to post all of this here, but I also know there are people here who are interested in what's going on with her. So there it is.

I am working on getting her second cleft palate repair surgery lined up. I'll keep you posted on that.

[_Always Changing]

Seventy is not that bad. It predicts being able to read at a basic level, and hold a job. And the long range outlook could be a lot better than that, given a good home and an educational system that does not write her off. I have seen kids with IQ's like that from advantaged homes, but whose rote reading skills were in the normal range. I am currently in a supportive role with a young woman who has all that, including cleft, but had fewer of the advantages you can give your daughter.

There is nothing stupid about writing about it. My prayers.

[_beastie]

Ms. Jack,

My heart goes out to you. My granddaughter was diagnosed with a chromosomal abnormality that little is known about, 16p 12.1 microdeletion. (it has no other name) It's associated with learning disabilities and speech delays. She'll be three in Jan. and still is not talking. She's getting ready to start the special ed preschool in Jan, and I hope it will make a difference. She's been in speech and physical therapy since she was about 18 months old and I can't tell that it's made much difference.

I love my granddaughter dearly - she lives with me along with her dad, who has primary custody of her. But there is no doubt that parents (and involved grandparents, like me) of special needs children have challenges, and sometimes it just hurts my heart to see other children her age who are "normal". I keep dreaming that, all of sudden, she's speaking in complete sentences. Then I wake up sad.

However, it's still possible that she will be close to "normal" once she begins speaking, although it's likely she'll have a learning disability. There is just so much unknown. Even with your daughter's IQ range, I imagine there is still a lot unknown. In addition, IQ tests at such a young age are not always reliable. (at least that's been my impression throughout my educational career)

:::cyber hug::::

[Guest]

IQ tests at such a young age are not always reliable. (at least that's been my impression throughout my educational career)

Seconded (and if I could, I would do it in chorus). That is why they call it developmental delay at that age.

[_hobo1512]

God gave her to you for a reason. It may not be clear yet, but it will be someday.

Special needs kids need extra special parents (and grandparents), so I'm sure your daughter is going to do fine.

[_zeezrom]

Hey MsJack,

I'm glad you shared it. I hope all goes well in the next surgery.

Zee.

[_Blixa]

IQ tests at such a young age are not always reliable. (at least that's been my impression throughout my educational career)

Seconded (and if I could, I would do it in chorus). That is why they call it developmental delay at that age.

I completely agree.

[_honorentheos]

MsJack -

Thank you for the update, I'm glad the news had bright spots.

I also echo the thoughts already shared. We've interacted a little in chat and elsewhere off the board and it's struck me before how quick you have always been to highlight your daughter and her importance in your life. I have no doubt she is very loved by you and your husband.

I think that is by far the most important thing. Whatever shortcomings you may feel you have, from where I stand it looks like you're doing an amazing job.

I worry sometimes myself how adequate I am to the privilege of being a parent - if I'm patient enough and quick enough to make time for her when life makes it hard. Maybe that comes with the job.

[_MsJack]

Thanks everyone for the kind words and well wishes.

Beastie, it sounds like your granddaughter might be in a similar boat to my daughter. Speech delays and developmental delays are the two things that are almost universal to VCFS. At age 3 the only words she was saying were "mom" and "no," and she didn't say those very often. (She knew "nana," but my mother had died almost a year earlier, so she wasn't really saying it anymore.) for what it's worth, we got her into special education pre-school and they really worked wonders on her. By the second year of pre-school, her vocabulary was "exploding." For kindergarten, she did a full day of school---half special ed, half a normal classroom. For first grade, she's been in a normal classroom with an aid, and if she acts up or is having trouble in class, they take her back to the special education classroom for some hands-on work. We're pretty pleased that she's gotten that far. She needs physical therapy, occupational therapy, and speech therapy, but she is improving. I hope that you're able to see similar success with your granddaughter.

When I told my husband the IQ news last night, he was shocked. He said he doesn't believe it. My FIL is a neuropsychologist, so I may ask him what he thinks.

[_Always Changing]

A re-test using a different measure might be interesting. If someone were to spend a morning playing with her, and help her be comfortable, and the next morning test her, there could be some different results. If the psychologist were off-put by her appearance and had more emotional distance, that could make a difference. Especially if that person had low expectations based on her appearance. I have not seen her, but it could factor into the test results.

An adaptive behavior interview might also be warranted. That was a standard part of my kit.