Tuesday, October 28, 2008

Is there anything I can do?


A lot of people in our lives have been gracious enough to ask "Is there anything I can do for you?" Almost always my response has been: No we're fine, thanks. But that's not completely true. Growing up the way I did I learned a an early age to take care of myself, by doing everything by myself. Well in our situation with three young kids, one with special needs, I can't do everything myself.

This seems a bit shameless, but what the heck. I've decided to create a list of things friends and family can do to help my family.

1. Call or e-mail us-even if we don't have time for a long conversation, a message telling us you're thinking of us really feels good. My friends Pat, Lisa and Debby have called just to let me know they're thinking of us, it's nice to have a cheering secton.

2. Bring us dinner anytime-what a huge favor, we now have a freezer in the basement that houses ready to heat meals. It saves me so much time. Thank you to Susan and Dixie for helping us stock the new freezer this summer...

3. Offer to have Owen over for a playdate sometime-With three kids it's hard to get around for activites without help, but with Dermot it's even harder. His special stroller is 50 lbs. and he's 31 lbs. so it tend to be too much heavy lifting for a trip to the library or a museum...I feel bad that Owen just hangs out around the house most afternoons, he'd love a change of pace. I'd call you but it's bad manners to invite my son over to your house, right?

4. Ask questions-We get the "How's Dermot?" question daily, we have a standard answer of "He's doing okay, I guess". Sometimes it's better to get specific. What's your life like now? How are you handling all the stress? How about them Twins?

5. Remember who we were before all of this and remind us-Sometimes I get so wrapped up in the sorrow and pain the comes with a special needs child, that I don't want to go out, I don't want to try new things or meet new people, it's like a black hole...

6. Read the blog-it's so nice to talk to you and find out you've read this, then I don't have to explain what's going on over and over again.

To be Continued...

Monday, October 27, 2008

The Gingerbread men

I'm mourning the loss of some of my friends who turned into The Gingerbread Men...

I've shared this reading before with friends. It still touches me and I read it often.

The Mother at the Swings
by Vicki Forman
It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?"

Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.

I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.

The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?

She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.

~

It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.

It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.

Sunday, October 19, 2008

I know nothing about special needs


This is a fantastic writing from a mom of a child with special needs. I warn you, it's a bit political...




I know nothing about special needs.
Posted 10/17/2008 3:02 AM CDT
Let me repeat that, I know nothing about special needs.

Yes, my son Elias has multiple disabilities that affect his balance, movement, vision, communication, and breathe, and yes I’ve immersed myself in the disability world by reading books, blogs, articles, laws, and enough bureaucratic paperwork to fill a truck, but I am merely a tourist in this world, hoping to learn the culture so I can advocate for my son.

I can’t claim to be an expert. I’m not even an insider. I’m just a mom who loves her child.

For McCain to say that Sarah Palin “understands special needs better than almost any American I know” just shows how out of touch he is with the disability community.

Does he know anyone with special needs?

Because surely they would know more about living with disabilities than the people who love them.

To claim that a new mother of a child with Down syndrome knows more about special needs than any other American is an insult to the hundreds of thousands of people who every day face the barriers of an able-bodied world. Or who despite cognitive differences go on to earn a Phd. Or who play ice hockey without full sight or compose music they can’t hear. Or…

…the list goes on.


And what about the writers, speakers, advocates, and organizers who fought for the Individuals with Disabilities Education Act or the American with Disabilities Act?

I think they know a little more about special needs than a governor whose only disability related act was to cut funds to programs that support people with needs. Who sat across the table from me and a roomful of people with autism, Down syndrome, cerebral palsy, vision loss, and other disabilities, as well as the people who love them and work for them, and smiled as she listened to our stories but failed to grant the Key Campaign the funds we requested to increase community services and research.

And now she has her baby Trig.

You’ve probably seen him on the national news. He’s cute huh? I cried when they showed his sister Piper licking her fingers and smoothing his soft baby hair. I’d like to see more children with disabilities on TV.

But not as political pawns used to pull heartstrings.

We’d see more children with Down syndrome, if 9 out of 10 women didn’t choose to abort their babies after receiving the invitro diagnosis.

That’s 90 percent. 90 percent.

If McCain and Palin override Rowe vs. Wade, while simultaneously enacting a spending freeze, how would these all these Ds babies receive services?

And believe me I want Trig to have more peers, but they won’t all be born into families with the means to hire caregivers and privately pay for therapy, medical appointments, and brain-building sensory toys.

And what about the autism epidemic that McCain claims Palin also knows all about?

Sure she has a nephew with Autism and cousins on the spectrum but, again. this does not make her an expert. I have a cousin whose gay but I can’t claim to speak fro the GLBTQ community.

I know a little bit about cerebral palsy, visual impairment, and cognitive delay from my son. Enough to fill a story or too but I couldn’t come close to finishing a book, let alone claim to know enough about any of these diagnosis to know what is best for other children who experience their own unique versions of symptoms, impairments, and skills.

Just because I can play soccer and ice hockey does not mean I can play basketball or golf. And don’t even think about getting me to do the long jump.

I got no jump.

And I guess this is what also struck me about McCain’s comments, as if he could sweep whole populations of people into the idyllic face of baby Trig.

As if Sarah Palin has even had time over the past six months to immerse herself in the world of special needs, while also campaigning for the Vice Presidency. She may be smart, motivated, and gutsy but she’s undergoing a crash course in foreign policy, media relations, debate training, and Washington politics, not Medicaid, therapy, disability law, and advocacy.

And she hasn’t even gotten to IEPs.

Or stood next to her comprehending son as she wrestled with how to answer a curious neighborhood kid’s question, “What’s wrong with him?’

Trig is still a baby and everybody loves babies-- especially when they don’t come attached to an oxygen tank or a feeding tube or startle the cooer with an obvious deformity on their hands or face.


I do not mean to underestimate the profound affect of having a child born with a diagnosis, but right now he is not a whole lot different than other babies. Sure his features may reveal his chromosomal differences but what he needs right now is sleep, milk, snuggles and fresh diapers.

Like most babies.

Even after 94 days in the NICU, multiple surgeries, and medical data that practically guaranteed Elias would have special needs I didn’t really understand what that meant when Elias was still spending the bulk of his time nursing and sleeping.

Sure we had a lot more professionals involved in our life than most new families and we had a portable oxygen tank in our living room, and a variety of unpronounceable medications to dole out, but I still didn’t really get it.

I still don’t.

Even now, with multiple diagnoses, I still hold onto a vision of Elias being “normal” one day.

I can still separate myself from my son and walk unencumbered away from the world of special needs.

I won’t.

But I can.

And that’s what separates me from Elias, and every individual who lives with special needs, and it’s why those of us with full capabilities cannot claim to be experts.

Its why we need to listen to those who truly understand because they live it, and can’t be fooled by political rhetoric to believe that substance follows their fashionable claims.

Thursday, October 9, 2008

Whew!



Well Dermot is eating again, hooray. He had three square meals today. He seems to be in better spirits too. In case you're wondering, this is a picture of Dermot when he was 5 months old having his first taste of rice cereal. I just thought it was cute.

We also found out today that Dermot does not have any of the scary terminal genetic or mitochondrial diseases that he was tested for last month. I didn't make this news public so if I've been on edge for the last few weeks you now know why. I can stop thinking all of the morbid thoughts I was thinking and move on, for now.

I also fired the nanny this week, bummer. She had a different style than I'm used to and didn't think it would work with our family. No worries, I have an interview lined up on Monday for someone new and more resumes coming in... I learned a lot from the process and must always remember that I'm a grown-up and am entitled to have things the way I want them.

We redecorated the house today and I'm up way too late trying to finish the new arrangement. I can never sleep when something half finished.

Good Night!

Tuesday, October 7, 2008

A thought

What a different world this would be if people would magnify their blessings the way they do their troubles.

Sunday, October 5, 2008

Eat!

So the new issue for us is to get Dermot to eat all of his food. I can't tell you how stressful it is to feed Dermot these days.


He's sick of the whipped cream, and is only eating about half of his meals some days. I don't really know what to do. I'm calling the doctor tomorrow. He's out of the office because of a family emergency. What about my family emergency!?! I want to give up this diet. It weighs on our thoughts all the time. Although Dermot's well-being weighs on us all the time anyway. It's a constant dark cloud walking around with us...

I sometimes get physically sick from the pain I feel. I run to release my worries, to relax and to forget for a little while. It works. Plus I'm back to my pre-pregnancy weight, so I've got that going for me.

We'll keep plugging along, we have to. It's our 6th wedding aniversary this Sunday, I remember our wedding like it was yesterday. Wow, what a carefree life we lived. As you can tell I'm feeling a little blue tonight, when that happens I always think about when life was easier, normal. Tomorrow's a new day.

I appreciate everyone's interest and support, I'm blessed with good friends and family.

One day at a time.