Eye Surgery and Asking for Help

This last week I have been rather MIA.  My apologies.

My husband is away on business in Europe (this time without me, boo!), and I threw my back out last weekend, which meant I was laying in bed.  In pain.

Then on Monday, my good friend Megan - single mom to a darling 8 year old boy with Autism - came to stay with me for a few days while she recovered from her cornea transplant surgery.  Yes TRANSPLANT SURGERY. 

Having Megan here was great, but getting her here took some convincing.  (I hear you gasping - "What?  An autism-mom who doesn't know how to ask and receive help?!!" - shocking, I know.)

You see she had surgery a week (or more) before she came, and after her surgery she actually popped the stitches out (OMG talk about pain!), and had a second surgery. 

How did she pop the stitches?  By doing too much.  By continuing on with regular life and not putting her own needs first because she didn't know what to ask for - what exactly she needed people to do for her.  And when she thought about it, it sounded ridiculous to ask someone to feed her dog - or her son.  She could do those things herself, and did, but it cost her.  And I can relate - I have been in that same boat. 

Ok, not the eye surgery boat exactly, but I've needed help and was uncomfortable about telling people in plain English what I needed. 

So when I sat down to write a post for Friendship Circle last week, that was on my mind - asking for what you really need when you need it.  And accepting that help.

Here is the post I wrote for them last week - I hope you will all take a step back and think about how many times you have needed help, and refused to ask.

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I have many friends – some who have special needs kids and some who do not – and often times I think they are at a loss for what to say or do for me during one of the many crises our family has.

When my son is struggling at school, or when my husband and I are fighting because we cannot seem to find a single second alone to speak about something other than the kids, or like last Spring when we were forced to hospitalize my oldest son, I find myself on the phone with one of my girlfriends venting, crying, and just letting it all out.

On the Road to Self-Regulation: Part 2

Continued from Part 1 ...

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Movin’ and Groovin’ for Vestibular Input

Mini Trampoline. This is a common sensory tool for many families; however, if you don’t have one, just know that you don’t have to spend a fortune on a “therapy-grade” one. I own the Jumpsmart™ Electronic Trampoline because of its triangular shape, ergonomic and intuitive handle bars, and integrated sound system. Just think, by having a trampoline that counts up (or down) for your child, he or she can get quality movement with less hands-on guidance from you, because all you have to say is, “Go do 100 jumps!” or “Can you jump for an entire song?” The Good News: All of that jumping provides great vestibular input, and making sensory activities fun encourages self-regulation. For information on the Jumpsmart™ Trampoline, and other great products for sensorimotor input, log onto: www.digginactive.com

Egg Chair. The people at IKEA deserve some kind of “Genius-Idea” award for this one! Not only does this chair offer great vestibular input because it spins smoothly and safely without any exposed parts, but also because it closes up to create a quiet “hideout” inside. This is a great way for kids to retreat and regroup after a long day. (A cautionary note: Be sure to check with your child’s physician or OT regarding the advisability of spinning.) IKEA also offers this at a reasonable price ($79 US) and in multiple colors. www.ikea.com

Hammock. Of all the ways to get vestibular input, this has to be the most relaxing. When we first got our hammock, all three of my sons would climb in on top of my husband and jostle for position. Unlike a traditional swing, the hammock allows for side-to-side motion, thus providing a different kind of vestibular movement. Gabriel prefers the side-to-side motion over traditional back-and-forth swinging both in therapy, and at home. You can find a variety of hammocks for sale, from many retailers. My advice is to choose a freestanding hammock with quality construction and frame because if your kids are anything like mine, it’s going to get a lot of use! Widely available.

Rocking Chair. We have two rocking chairs in the house, a small child-size one that my father built for me when I was two, and a full-size leather La-Z-Boy® that fits nearly all of us at once – or at least it did when the boys were younger! Rocking can have a calming effect on Gabriel’s sensory system. Reading and rocking with the boys is a nightly activity [pastime???] at our house, and most often we will use a heavy blanket while doing so. The combination of simultaneous vestibular and proprioceptive input [Does that work?] offers a strong dose of needed sensory input and calms Gabriel, and often Matthew, down almost instantly. Also, our kid-size rocking chair offers my sons the opportunity to keep their bodies moving on demand; encourages self-regulation; and keeps their bodies active while they watch a movie or TV. Widely available.

FTF: "Up and Screaming" by Sarah Hoffman

This year's First Things First series of guest posts is kicking off with a great post from Sarah Hoffman!

Sarah Hoffman is the mother of a pink boy and a girl whose favorite color is yellow. She writes for national magazines, newspapers, and radio, and speaks publicly about raising her gender-non-conforming son. She uses a pseudonym to protect the safety of her family.

If you haven't visited Sarah's blog, you are missing out.  Her humor, insight, and charm make her writing a true joy to read. 

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"Up and Screaming"

by Sarah Hoffman

At birth, Sam was blue—but the doctor was not worried. He pinked up quickly with oxygen and gave a hearty cry. In the hospital, he seemed normal, with only a few small oddities: he picked up his own head an hour after he was born, and he refused to stay in even the military-crisp swaddle enforced by the three nurses who tried. Within moments, he broke free of the blankets, flailing his arms and crying.

The real crying didn’t start until the ride home from the hospital—Sam howled all the way. After that, there was no car trip when our first-born child didn’t scream from the second he was put in his car seat to the second we removed him. He cried, too, in the stroller, the swing, the bouncy seat, his crib. Most of the means new parents have of soothing their screaming infants were lost to us, and so we held him. And sometimes he cried even then.

Our doctor told us Sam was healthy, merely “sensitive and intense.” The next doctor concurred. The doctor after that told us Sam had a behavioral problem and we needed to set limits with him. He was five months old.

Sam would only sleep at night if we held him on our chests, and even then only in 15 to 30 minute stretches, from which he woke up screaming. My husband Ian and I took turns holding him while the other slept.

Crazed with sleep deprivation, I called my therapist, who told me that I needed to hire a nighttime babysitter. I couldn’t do it—I couldn’t hand my baby to a stranger when something was wrong, when he needed me. Which meant that Ian and I quickly became incapacitated: unsteady on the stairs, unable to work, unsafe to drive.

My therapist said: It’s OK for Sam to be up in the night screaming. He’s a baby, and he will get through this. It’s not OK for you to be up in the night screaming.

I couldn’t, in my sleep-deprived haze, see the reason in this.

Marriage Advice Moms Don’t Want to Hear

Subtitle: “It Isn’t Your Husband’s Fault”

I hear so many women complain about their husbands and I am totally guilty of this too. But, I am not in your average-run-of-the-mill marriage. My husband and I are raising children with special needs, developmental delays, complex neurological conditions, mental illness and learning disabilities. And that puts a different kind of pressure on our marriage.

This is the kind of pressure people experience that are dealing with chronic illness, unemployment or long term financial issues – only worse. This kind of pressure is centered on helping our children and that means the stress is ever-present for both of us. Which sets the stage for problems.

Often families go into full-speed-ahead mode right after diagnosis. Especially moms. We become consumed with learning everything we can about our child’s challenges: Spending hours researching, going to forums, blogs, support groups, calling doctors, and hundreds (if not thousands) of dollars going to therapists, psychologists, behavior specialists, and even MORE money signing up for social skills classes, and buying therapy equipment so we can turn our home into a therapeutic oasis for our child. We spend everything we have each day pushing the envelope to find ways to help our child. Because we are the MOM and that is what we DO.

But what often happens during the never-to-be-quenched-thirst-for-knowledge-mission is a polarization between husband and wife. You cop an “I know the answers” attitude that quickly leaves your husband to play the role of “guy who doesn’t know the answers”. And about a year or so down the road, you turn around and realize that YOU have done ALL of the work. And you get angry. Frustrated. Annoyed. Pissed off that your husband doesn’t understand your child or appreciate all that you do. Sound familiar?

Yet, as hard as it is to believe, it isn’t your husband’s fault. Not the answer you were hoping for?