What Aliza's Thankful For

In school, Aliza has to write a letter to us every week.  We have to write back (yep, I get homework in 4th grade).  This past week they had to write about what they are thankful for.  I read her letter tonight and ... well, here it is.  I swear, this is what she wrote, word for word.

Dear Mom & Dad,

I am thankful for a loving family.  I'm also really, really thankful for my brothers with Fragile X because even though they sometimes won't let me have the TV or if Zack pinches me, well, we get to go to parks more often, and I always have someone to play with.  And AJ's really funny when he sings songs, I like "Hold Still" and "Happy Birthday" the best.  Zack sometimes isn't the nicest but he is really a sweet kid most of the time, and they get along most of the time pretty well unless it's fighting over the iPads.

It's so sweet, I almost can't stand it!

It goes without saying that Aliza's relationship with her brothers is unconventional.

Aliza's brothers can't fight with her, the way little brothers would normally fight with a big sister.  They can't switch places on her and pretend to be each other, the way I thought they might, when we first found out we were expecting identical twins.

There are some things they do that typical little brothers do.  They take and break her stuff.  Zack pinches her, and even though she knows that it's a part of his disability to lash out physically, once in a while she gets mad and hits or pinches him back.  I don't get on her case for it too much.  I mean, Zack knows he shouldn't do it, and he needs to learn to control his impulses.  And I'm not going to tell her she has to sit back and just take abuse from him.

Mostly, though, since the boys have limited communication skills, she takes cues from us - mom and dad - in learning how to behave with her brothers.  So she's rather parental toward them.  She praises them when they do something correctly.  She encourages them to hug her, and I've seen her give AJ kisses on the top of his head.  She helps me get their jackets and socks and shoes on them when we're
getting ready to go out.

Yep, it's very, very different from other siblings relationships with each other.  And sometimes that worries me; that she might be missing out on something.  But I know that everyone's growing-up experience is different, and different doesn't mean bad.

And she obviously isn't unhappy about her situation.  She loves her brothers so much.

After I read her letter I asked her if she minded if I wrote about it and posted it on my blog; she didn't hesitate.

"Sure," she said.  "Can I have a piece of pie now?"

The Fragile X Writers Series - It's A Fragile Article

Today's Fragile X Writer is Amanda Selvarajah, whom I know would be one of my best friends if she didn't live a million miles away.  Amanda moved to Singapore 5 years ago with her hubby and 3 children.  Her daughter is now 10 and in an international school and her twin boys (with Fragile X) are 7.  One of the boys is on the autism spectrum and goes to a local school for autistic kids every morning (where Amanda has spent the last 3 years educating them about Fragile X); the other goes to a local special school, but not the same one. 

I'm especially touched by her story because her family is almost a mirror image of mine - she has an older daughter and twin boys with Fragile X.  I relate, word for word, to what she says.  Here's Amanda's story.

“How are ya?” People ask.. well, I’ve had a pretty tough week.  My eldest daughter has had a week off school but my twins haven’t (because the international and local school holidays do not overlap, except for 2 weeks over Christmas) and I’m kind of worn out from trying to make sure she has fun whilst ferrying them to and from their schools.  All things being equal a week off school really shouldn’t be this big a deal, but my boys have Fragile X.

I have it.

My mum has it (it’s genetic – you know).

It’s a good description.

Fragile.

I mean, I’m doing OK.  But, ask me again in an hour…because it’s a fragile kind of "OK."

We don’t live on a farm.  In fact, we live in a city state.  5 million people in 700 km squared.  It’s packed.  But so long as the boys’ personal world is not invaded, they cope.  We can sit in a crowded food court with a lot of noise and they will cope.  But it just takes something small ie: someone tries to clear our table.  Drinks get tipped on the trays, trays get thrown on the floor and crying follows.

Even planned surprises (such as dad coming home) can be too much.  I get hit, their sister gets hit, crying and shouting follow.  They need stroking (or brushing), holding tight with their eyes squeezed shut.  Such is their need for calm stability.  They’re doing okay, but it’s the fragile type.

My boys like to jump.  On the trampoline, in puddles, on their beds, sitting on exercise balls.  This sensory diet is so essential that if it can’t be managed for a very short while (like when you’re strapped into a car seat) it tips one son in particular into a state of shut down anxiety.  Eyes closed, t-shirt in the mouth, biting down with force – you know what I’m talking about.  Their need is strong and their ability to stay calm without it is (erm…) Fragile.

I’ve just started reading a book which might help me understand my daughters feelings towards her brothers.  I’m becoming aware that this could be an issue for her in the future (like maybe today or tomorrow).  She’s anxious when folks come over, when she’s misplaced a library book, when something unexpected happens.  I’m watching her.  Growing up with some chronic stress and unusual sibling relationships have made her careful of who she’ll invite home.  Is she rightly anxious?  Or is this carrier anxiety?  She’s not been tested yet.  We’ve discussed it.  I think she’s had enough information for now.  I’m carefully inching forward.

Our commitment to events is fragile. "We’ll see how it goes,” “ I HOPE we’ll be there.” Should we try this? Should we go there together?  My boys are so anxious, I almost daren’t try new stuff.  Excitement is to be avoided.  What must I remember to include or avoid in our daily activity?  What might happen?  Such a delicate situation.

As parents we tip-toe through the days, until we find some sure footing.  I know I’m exhausted, but is it long-term stress?  Or is it a carrier related thyroid issue?  I worry.  I think.  I plan.  I advocate.  I’m constantly on egg shells, trying to find a path in our fragile world.  I often ask the sky to ‘give me strength’….if only just for the next hour.

Got Multiples? With Fragile X or other Special Needs?

After talking to the Sertoma Club about Fragile X, my sweet friend Kim made a comment about how I should consider talking to my local Mothers of Multiples club. I loved the idea but thought, I'm not sure my topic (Fragile X) would be all that appropriate for the MOMs club......but Kim, you made me start thinking about multiples and special needs.

My mothers of multiples group currently has 590 total members. 28 of us are in the Special Kids, Special Needs subgroup. That's about one out of every 21. I've always felt like our Special Needs group was smaller than I would have expected.

I have always heard that disabilities and special needs in general are more common among multiples, simply because they are so often born premature, and the human womb was not created to hold more than one fetus. Multiple babies in the human womb create space and nutrient issues. That's why if you are carrying twins or more, you immediately get the status of "high risk" in your pregnancy. I started looking up to see what kind of information I could find on the World Wide Web about multiple birth children and statistically, what percentage of them tend to have disabilities.

(Of course, my twins' disability has nothing whatsoever to do with the fact that they are multiples. Fragile X is genetic, they got it because I am a carrier, and they both have it because they are identical. Their being twins is just a bonus.)

It's estimated that 1 in 110 children (1 in 80 boys) in the U.S. have an autism spectrum disorder. I believe in Minnesota that number is more like 1 in 70. I don't know why it would be higher here. I googled "autism rates in minnesota" and found this article from last January that indicates autism rates seem to be disproportionately high among the Somali population, at least in Minnesota.  I'm not sure what that might have to do with it.  I thought ASD was like Fragile X, in that it didn't discriminate.

And check this out, which I found on this blog.

I wonder the same things that blogger wonders. Do they just not know how to diagnose it in the states that claim a lower rate of autism among children? Or, conversely, are we too ambitious about diagnosing it here in Minnesota? Do we REALLY have that many more kids with autism than the national average?

Anyway, getting back to my original subject, I found these statistics here.

• Among identical twins, if one child has ASD, the other one will have ASD 60-96% of the time.
• In non-identical twins, if one child has ASD, the other one will have ASD 0-24% of the time.

 That sounds like there's a pretty good chance that autism has a genetic component. Is anyone doing research on that?  Are there any studies being done on the rate of special needs among twins, triplets, and more?

Because I, for one, feel like there should be.  I feel sometimes like I live on an island.  I don't relate much to my friends in the Mothers of Multiples group.  The Fragile X group members come a lot closer to getting what our lives are like.  I don't want to sound like a whiner.  (Go ahead, say it -- I kind of do sound like a whiner.)  But from the first day the boys were diagnosed, I felt pretty alone, probably just like anyone else who gets a diagnosis they have never heard of.  My multiples group's special needs subgroup was really the first place I went to, and unfortunately it just isn't very active.  It seems those people have gotten the support they need elsewhere.

Anyway -

I found a few more special needs/multiples quotes and stats I thought were compelling:

Cerebral Palsy occurs 1.6 times in 1000 singleton births, 7.4 times in 1000 twin births, and 26.7 times in 1000 triplet births.

At this site it claims "In terms of psychopathology, attention-deficit/ hyperactivity disorder is more frequent in twins and multiples than in the general population."

I wish it went into more detail about how it came to this conclusion, although it's not hard to believe.  The human neurological system is a labyrinth, and if one body is expected to create and sustain two or more new lives at a time, the chances of problems with that would increase, logically.  All it takes is one, tiny, crossed wire...

While doing this online investigation, I avoided reading anything that was more than three years old.  I didn't want to be citing something that is, in terms of autism research, ancient information.  But then I found this article called Raising Special Needs Multiples.

 I love this article.  This is information that won't change.  If you have multiples with special needs you really ought to click on it and read it.

It says

"Parents of special needs multiples often feel isolated, not fitting in with parents of healthy multiples in local twins clubs, but also not finding their needs fully met by groups of parents with disabled singletons."

I found this statement really gratifying, because it is what I've been striving to express, myself. I sometimes feel like I don't really fit in with the Multiples club, and sometimes my struggles are different from the Fragile X families I know, too. More and more I look for blogs and stories about families with twins with autism or even Fragile X, hoping I can identify more closely with them.

Another thing that falls under the category of "I Wish I'd Written That", is this part:

"If your children were born two or three months early, it might be quite awhile before they smile, hold their head up well, or roll over. This delay in development and social responsiveness is discouraging to many parents, especially if children require a lot of care and parents aren't getting much feedback in return." 

My twins weren't born that early, but thanks to the Fragile X gene mutation, we definitely experienced the delay in development and social responsiveness. I didn't realize how much I needed those smiles and hugs from my babies. It feels petty and small and needy of me to say that I really needed that feedback from them and it was tough to provide the day-to-day care when all I got in return was screaming and crying.  But it's the truth.

I used to tell people that my maternity leave with the twins was like being at work, only a work where I had two bosses who screamed at me all the time and were never satisfied with the work I did.

Everybody knows that twins often have a special bond that they don't share with their siblings or even their parents. I think twins with special needs have a connection that's even more unique.  I don't know if our twins know it yet.  But I underestimate what they are able to understand quite often, so they might already be aware of how special they are to each other.

So if you have, or know of a family with a blog about special needs multiples, please comment here and let me know about it.  I'd love to start a list!