Category Archives: inclusion

I will gladly stand in line….

Like many moms of a child with special needs I am a little worried about the changes Disney is having to make to their Guest Assistance Card policy. Here’s the thing though…I am not upset with Disney.

I’m upset with those who take advantage of a Company’s good will. How dare anyone make life more difficult for those who already struggle. To add insult to injury, there are those who state that our children “cut in line”.

Really? Hmm…I will gladly stand in line for a ride and have done so before and with Boo. So here is the deal I propose:

How about if Boo stands in line and you stand in her therapy appointment?

How about if Boo stands in line and you clear her airway when she chokes on her drool?

How about if Boo stands in line and you hold her on your hip because she is too week to stand on her own?

How about if Boo stands in line and you hold her down while she undergoes blood work, cardiac testing, MRI’s and other medical tortures?

How about if Boo stands in line and you spend some time in Our Land?

How about if Boo stands in line and you do not look at her with condemnation because she cannot control her squeals, muscle spasms and vocalizations when she invades your personal space?

When we traveled there last year I was amazed at how well they took our daughter’s needs into consideration. Each cast member was trained how to treat all patrons with respect and courtesy. We never expected to “cut in line” in front of those who stood in line, but needed to keep Boo in her stroller/chair until the last possible moment.

Just to be clear, in our experience the only “cutting” in line was when there was no feasible way to get Boo’s stroller/chair to the ride through the normal line. We stood in line, like everyone else, in attractions that had a safe method to get her to the attraction. Even when we “cut in line” we did not immediately get on the ride. Rather Disney allowed people who had been waiting to enter the ride and put us on in a reasonable (to me) manner.

When asked if Boo has so many ‘issues’ why would we even consider taking her to a theme park I have the following response: Well, for one, her sister shouldn’t miss out on life events because her sister needs some consideration. And two there is this….

Why shouldn’t Boo get to see the Magic of Disney just because she is unable to stand in line?

I agree there is abuse, like all great plans some fool has to mess it up. But it is not Disney’s fault. The Company really has no option to try and improve on their system. I applaud them for being proactive and for listening to the parents like me.

And I hope those who ruined this beautiful experience lose sleep tonight.

The Journey

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Yesterday while waiting for Boo in therapy there was a little boy who was walking around, in his own world and knocking on the walls. He was beautiful. It occurred to me at that exact moment that if I didn’t have Boo in my life I might not have noticed how absolutely beautiful.

I would have looked away.

I would have thought to myself what is wrong with that boy?

I would think, yuck look at that drool.

I would not have spoken to his mom, thinking I was sparing her embarrassment.

I would have been wrong and heartless and selfish. Because I would have thought to myself thank God Allie is ‘normal’.

Thankfully, I have Boo.

So I saw the beauty in the way the little boy comforted himself by knocking on the wall. I looked into his eyes and saw the light shining inside. I recognized his drool and realized it was because he was concentrating so hard. I spoke to his mom, asked how old he was, what school did he go to.

I made small talk.

Not about her son being in different, but how he was the same.

In that moment I was thankful that Boo had made me a mom with special needs.

I remember when I was pregnant and told that due to my “advanced” age my baby was at higher risk for birth defects (hate that word now), Down syndrome and a host of other scary things.

I opted for just the blood test and told God I could handle Down syndrome. But nothing scarier. Why Down syndrome? Not because I knew a lot of about it, but because children and adults with Down syndrome were the least scariest to me. I saw them in the playground, the market, in my life. “It” seemed manageable.

By the way, I realize how arrogant and condescending that sounds. Bear with me.

When the geriatric tests came back negative, I was relieved and moved on with my pregnancy. Then Boo was born and I learned that it doesn’t matter what your child was born with, a trip to the NICU is beyond scary. At that time I thought it was the scariest thing I would ever go through. Boy was I wrong.

It is also enlightening.

Being Boo’s mom has opened my eyes and my heart. I am a better person because I am a card carrying citizen of Our Land. When I see a child (or adult) not acting typical, I do not jump to the conclusion that the child needs discipline. When I see a parent at the end of their rope in the grocery store, I reach out to them.
I learned that by never hiding Boo’s light I am opening our family and friend’s hearts to others in the community. Most of them have now banished the word retard. They are teaching their children to do the same.

My friendships are now more meaningful and important. I have become more vocal and more of an advocate. I have gained friends that I would never have come into contact. I have become more outgoing and outspoken. I certainly wouldn’t have begun blogging. Blogging opened up a whole new world of laughter and support.

All because of Boo.

Do I have moments when I wish that Boo had been born “typical” or with what I thought I could handle? Sometimes, but only because then I would have a tour guide who would know what path to take.

Yet I wouldn’t trade this undiagnosed journey for the world.

There are heroes and then….

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There are heroes and then there are SUPER HEROES. Those individuals who leapt buildings in a leaping bound, the wonder women with magical bracelets and an invisible plane.

Man, I’d like an invisible plane. That would be super cool.

When I was younger I wanted to be a member of the A-Team. I thought the Colonel Smith was the best, loving it when a plan comes together. Who wouldn’t have a crush of Faceman? I wanted to big brother like BA Baracus (I thought at least one of his necklaces would look good on me). And Madman Murdock? He was just like this Uncle I had…Anyway I thought, as a tween, I would be cool and safe as a member of the A-Team.

Photo credit

Then I grew up.

And I realized the superheroes are not that common. That a plan doesn’t always come together. That you need to sometimes be a BA to get things accomplished. I also realized something else. Superheroes come in all ages.

The woman who hugged another in an elevator.

The father who pushes his son every year in the Boston Marathon.

The soldiers near and afar who put their lives at risk every day so I can sit in my home and drink my wine.

The makers of my wine.

The grandmother who looked at a child having a temper tantrum and told the parents it does get better.

The doctors who saved my daughter’s life.

The therapists who enrich Boo’s life making her the best she can be.

The school teachers who have more patience than Saint Teresa.

The friends and family who answer my HELP ME calls.

The people who run into the emergency rather than running away.

But I do have one SUPER HERO….

Allie.

Who looks at her sister with love and empathy. Who has adored her sister from the moment they met.

The sister who braved multiple hospitalizations to see her baby sister. The girl that explains to other children that Boo has a “funny” pattern in her brain that makes her “special”. The girl who has attended so many therapy appointments that she can run her own. Last week, after coming home from a sleep over, Allie took the time to go through Boo’s speech therapy:

Boo: I EKRJWORYOWEHFOFJSFROREEEEEEEEEE
Allie: I
Boo: I
Allie: Want
Boo: Want
Allie: To
Boo: To
Allie: Have
Boo: Have
Allie: Cookies
Boo: COOKIES!!!!!

This is a super hero at just nine years old. Allie possess the ability to calm her sister, to hold on while Boo deal with a hazmat situation, who calms a head-banging moment, helps her swing and jump. Allie is the protector and the “mad” girl who cracks Boo up with her antics. Kind of like the A-TEAM all mixed into one little package.

It helps that she is cute beyond belief.

I hope to she maintains her membership in the hero society. I cannot wait to see how she changes the world.

Who’s your hero?

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Listen

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On Fridays for 5-minutes I hop on the Lisa Jo Bandwagon and just write. Unedited, unrehearsed, just mind spewing to the keyboard.

Today’s prompt: Listen

Listen to your gut. I hear so many parents of children who have special needs that do not follow their instincts. Do not believe just because some one has MD after their name it means they are smarter than you. You know your child from the moment you first feel them move inside you. You know when they first look at you. You know when they first hold your hand. You know when something is wrong before the doctors do. Listen and follow your mother’s instinct to protect their young.

Listen to your soul as it expands to include a love never imagined. When you first conceive friends will tell you that there is an automatic feeling of love. This isn’t always true. With Allie I was too nervous, it took a while to feel that connection. It was there, I just didn’t listen to my heart because I was too worried I was doing something wrong. Then one day I realized that my soul had grown from the love she gave to me. Then Boo came on and it grew again. Kind of like the Grinch who stole Christmas whose heart grew three times too big.

Listen to yourself. This week there has been a lot of blog posts about how woman perceive themselves. Those who think they are fat, those who think they are too skinny, those who worry about the message we are sending our daughters on what a woman should look like. But we should worry also about our sons. They too suffer from body image issues. So listen to how you describe yourself, and stop. Because your child is listening to you and transferring those thoughts to themselves

Listen to the moments of opportunity. Let yourself forget your own struggles and help some one who needs it. It may be as simple as educating a cashier at a grocery store that the word retard is not an adjective. It may be just stopping in an elevator and hugging a stranger who is having a hard day.

Listen to your children. Yes, it is so hard when they talk non-freaking-stop. But once in a while you may discover that they know more than you do. Listen how they stop and spy a spider web that is home to a fairy. Don’t you wish you could hear what they hear?

Listen to yourself, you might be amazed at how awesome you are.

Stop. Okay enough preaching. Go and enjoy the weekend!!!

How not to get the mom of the year award.

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No, this is not a post a poor me post. There are days when I know I am not being superwoman. There are only so many balls I can juggle. Between mom, therapist, doctor, worker and wife.

There are days when I forget to put a sandwich in the lunchbox. Yes, I did, not this morning but recently. I have sent Allie to school three days in a row without bathing her. No she didn’t stink. At least I hope not. I have tried to convince Allie not to attend her school social events and forgot to feed them lunch on the weekend. Unless cookies and yogurt count.

On Monday I seriously took the cake of so-not-mom of the year. Okay, I ate the cake that I had hidden from the girls. In the closet. But I digress.

Boo had a field trip. After the last field trip there was no way I wanted to go and work provided a handy excuse. Since I was already taking time off this week for another of Boo’s appointments I could not justify being out of the office. Of course as so often happens, husband was also working.

I sent Boo on a field trip by herself. Okay, not herself, she was with her aide. I did have her tag pinned to her back letting anyone who may find her, if she wandered, what to do. I was a nervous wreck. But I left her anyway. She may have been the only preschooler without a parent there and she couldn’t care less. From what I am told she had a fabulous time. I still worry that I have scarred her by not being there.

As we got ready for the day my husband and I were talking about how we couldn’t go with Boo and how nervous we were. As I dropped Allie off at the bus stop she said:

Why are you so upset about not going on Boo’s field trip? It’s not like you have ever gone to any of mine.

Yup, not only is Allie the master of the understatement she is also the master of Mommy Guilt. Her revenge?

The Spring Concert. Tonight we are attending the grades 1-4 Spring Music Concert. As Allie is in 3rd grade that means we have to sit thru two grades singing two songs each and then the intermission. Did I mention the Bruins first Stanley Cup game is tonight?

The one upside to not winning mom of the year is that I won’t have to dust the mantle for display purposes.

Wow

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Opening Boo’s backpack yesterday and I got the biggest surprise….an invitation to a birthday party.

Wow.

This is a huge milestone for Boo. In some ways I am so excited, a friend wants her at her birthday party. In truth everyone from the class is invited. That doesn’t take away from the invite.

Boo has been included. She is a part of the class and her friends want her there. Now do Boo’s parents?

YIKES the true answer is selfish. I worry that Boo will be overwhelmed (it is a local children’s museum), that she will just sit and watch from my lap. I worry that I will have to be confronted (again) with the visual reminder that my Boo is their age but not their peer.

But this isn’t about me. Boo was invited, she was included. Boo will be going to her first birthday party.

Wow.

Update: Just got home to find that the day of the birthday party is a day when we have a family obligation. Upside Boo was going to go to the party. Downside, she will just have to wait a little longer. Bonus? She was included and that is all that matters.