My Responsibility as a Special Needs Parent

Posted on January 18, 2012 by Julia Roberts

It’s my responsibility…

-       to love them for them and never try to change the core of who they are,

-       to make my kids’ lives as easy as possible where their disabilities are concerned,

-       to ask that exceptions be made to to help them and improve our family’s quality of life,

-       to help navigate the healthcare system for them while teaching them how to do it for themselves if they are capable,

-       to protect them from people who want to do them harm; no matter the form,

-       to fight for them and sometimes to fight for them, in front of them,

-       to work with people with personalities that don’t mesh with mine when they can help my kids,

-      to see the best in them and help them see it too,

-       to seek the best treatments available,

-       to work a system that needs to be worked,

-       to help them live full lives, whatever that means,

-       to help them celebrate their accomplishments,

-       to not shame them or let others shame them,

-       to give back/volunteer at something related to their special needs,

-       to help them feel included,

-       to reach out when I need support and offer it when someone needs it,

-       to educate and inform people when they are truly interested,

-       to always strive to do better by them,

-       to make sure I build and keep relationships that surround them with love,

-       to find an avenue to something to meet a need,

-       take time for myself,

-       to give them a break when they need it,

-       to push them when they need it,

-       to never give up.

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Posted in Raising special needs kids, Tips for parents, families and friends, What others take for granted | Tagged , | 4 Comments

Who deserves a kidney? CHOP says no kidney for Amelia.

Posted on January 14, 2012 by Julia Roberts

Quinnlin’s & Cheryl’s kidneys

Yesterday my friend Cecily sent me a link to a blog post by mom, Chrissy, who had, just a day earlier, been told her daughter’s life wasn’t worth the amount of effort it would take to have her receive a kidney transplant from a living (known to the family) donor. Because, as the doctor put it, she was “mentally retarded.”

Here is the heart-wrenching post from Amelia’s mom.

I read the words and I couldn’t believe it. As the mom to two kids who’ve had kidney transplants, I could certainly put myself in her position. My kids have developmental delays, 3 vision disorders, and one has mental illness. Any of those same arguments could have been made to us.

We have no idea what the kids’ futures hold. Can they work? When will they get sick again and need the next kidney? If Gage’s mental health is unstable, does that make him unworthy of a new kidney? Maybe CHOP would have denied him, because who knows, when he’s 30 he might not take his meds.

I quickly left a comment that I would gladly come and fight with her when she and her husband go in front of anyone to fight this. I would happily pay my way to share our story of two kids, who have complex medical needs. And how some doctors, like this one at CHOP,  could see that they, too, didn’t deserve to live. My kids have uncertain futures (like all of us) but are thriving on their donated kidneys all because the doctors a Children’s Healthcare of Atlanta (and UAB) valued their lives.

Little Amelia is not without support. Please go and sign this petition that Sunday of Extreme Parenthood started.

CHOP PAtient’s Bill of Rights
#2 on CHOP Patient’s Bill of Rights
Receive care, treatment and services regardless of race, color, age, sex, national origin, religion, handicap, disability, sexual orientation, who pays for care or your ability to pay.

File a suggestion, complaint, or grievance by discussing with the clinic, unit, or department manager or other supervisory person, or by contacting The Children’s Hospital of Philadelphia’s Family Relations Office by phone at 267-426-6983 (within the Hospital dial ext. 6-6983), by e-mail at FamilyRelations@email.chop.edu, by fax at 267-426-6990, or by mail addressed to the Family Relations Office, The Children’s Hospital of Philadelphia, 34th Street and Civic Center Boulevard, Philadelphia, PA 19104.

Saying Amelia shouldn’t receive a kidney is like saying Gage and Quinnlin shouldn’t have either. And my mind goes to very dark places when we think about that path.

I was in the car all day with the kids when this story broke loose and we talked a lot about it and Gage and Quinnlin tried to think about life if they’d not been approved by a team of doctors who said they had too many special needs.

They both agreed “that is stupid.”

“Is she gonna die?” Asked Quinnlin, then turning it around to other kids.

“They should give a kidney to anyone & shouldn’t matter if they have a disability.” said Gage. Then he said, “what, because I have disabilities, they would want my kidney back?”

They should know what they’re talking about.

Now go be outraged in honor of Amelia.

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Posted in Kidneys in general, Raising special needs kids, Story telling, What others take for granted | Tagged , , , , | 21 Comments

How Snapfish by HP Saved My 2011 Resolution

Posted on January 12, 2012 by Julia Roberts

Snapfish by HP helped me by letting me use their design service, while saving me hours of designing the kids’ art photo books. Yes, there were over 200 photos. See how the kids’ books turned out!

I wrote an entire post on Support for Special Needs. I wanted to do it because in all of 2011 I’d hope to create art work using photos of the kids’ are so I could get rid of the two bins. I did it! Well, it was within the week of 2011…look and see what I did over Winter break.

My post at Support for Special Needs is brought to you by Snapfish by HP!

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Letting go of the shame.

Posted on January 5, 2012 by Julia Roberts

I can’t talk about being so depressed that I wanted to die. I’ve not been there. I can only tell you that I know it feels desperate, and real and dark and like it will never end. I can tell you that because watching Gage go through his depression was all those things to me; it was a debilitating darkness for him and our entire family.

If I felt that way, I can only just imagine what he felt like.

On many occasions, I’ve read the blog of Jenny, The Bloggess, (one of the most well-known and funny bloggers), and with interest read about her fight with depression. A couple of days ago, she wrote this post about a recent bout of depression. She also wrote of her self-harm, which she disclosed, with trepidation, for the first time. The support she received was truly unbelievable. She did an amazing thing for mental illness awareness. She, most likely, has just made a positive impact on how the world will treat Gage in the future. Thousands of supportive comments and numerous times the post was shared on the internet.

I can’t express what that means to me. As early as three years ago, when I was asked not to blog about Gage’s mental health issues (by the school) and we made the conscious choice to do so, I longed for the day when there would be more awareness. I wanted to share Gage’s story because someone has to and the more of us that do, the easier it will be for Gage and everyone else who suffers mental illness to be judged on the content of their character, not their illnesses.

Gage had a lot of the warning signs of a clinically depressed person. Nearly all actually. Sadness, beginning actions of self-harm, quit doing everything that gave him joy, remained unconnected for months, and he would rage for hours unable to express himself.

Gage will always be at risk. I type those words with fear and hope. I am hopeful because we’re better equipped and so is he. He will have the experience of having been through it and come out of it and I’m hopeful he can draw on that experience when it gets hard.

It’s not been easy sometimes, especially when other parents take it out on your kid and teach their kids to do it, too. There were a several parents (mostly moms) that did this form of bullying against Gage. There are still a couple of parents I have to see occasionally at school functions and they are a constant reminder that people will smile at you one second then try to break your kid’s spirit the next.

All because they lack understanding and compassion.

Maybe with more awareness it won’t always be like this; maybe my kid will have it easier because of Jenny and my friend Jen, who shares her story with a rawness that will leave you breathless.  I hope that with each year it gets easier for Gage to be out in the world without retribution like he has suffered because of the courage Jenny and Jen have shown.

Thank you, thank you. You’re changing the world, one story at a time and while you’re sharing your stories, you’re very much likely changing my son’s world.

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Posted in Going Mental, Raising special needs kids, Story telling | Tagged , , , | 12 Comments

11 and 12 Things

Posted on January 1, 2012 by Julia Roberts

Happy New Year from our Family! Yes, the picture in the bottom, right corner is the photo that represents The Fun Couple. Happy New Year from them, specifically.

11 Things About 2011

1. 2011 was the year Gage left elementary school and the love and protection of a dedicated group of educators who single highhandedly held him together with duct tape. Plus, I miss having both kids at the same school.

2. I will not miss the several hospital stays for pneumonia, asthma, and infections.

3. I made some great new friends in 2011.

4. I picked up some incredibly nice clients and kept some incredibly nice clients.

5. I spent time at the beach alone in 2011 and long for it again.

6. I spent time with friends away from the hustle and bustle of our lives.

7. In 2011 my kids flourished.

8. In 2011 I spent 2 glorious days alone with my husband for the first time in years.

9. In 2011 my blogging life intersected with my real life in awesome ways.

10. In 2011 I traveled with my family internationally and we created incredible memories.

11. I watched my daughter laugh with Disney characters on a cruise.

12 Things About 2012

1. We’ll celebrate 18 (accurate) years of marriage.

2. My 2012 resolutions are few and obtainable.

3. I’d like my kids to continue to flourish.

4. At Support for Special Needs.com hopefully will help more people feel supported.

5. Volunteer more.

6. Oh man, in 2012 I’d like to save some money.

7. In 2012 I’d like to think about life without limits.

8. Write more.

9. Play more Yahtzee.

10. Laugh more.

11. Help the kids grow with responsibility.

12. Grow friendships with genuine people.

 

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Always, change.

Posted on December 31, 2011 by Julia Roberts

Biopsy day, 2011

One thing is a given in our world and that is change. It can be for the better or for the worse, but change will come. We will either welcome it, as we did with Gage’s mental health stability, or we will tolerate it because we have to; as we did with Quinnlin’s kidney failure.

It’s helpful as parents if we learn to change with our circumstances. It’s helpful as a mom and it’s helpful as a couple because doing so brings us some sense of peace in the knowing Things. Will. Change. The thing is; they change for everyone. What’s makes us so different from everyone else?

The change, a lot of times, can be big, life-altering change. That’s true of learning your baby or child has an incurable disease, it’s true of learning there are certain dreams you had for your child that will go unfulfilled and it’s true of a new symptom or treatment. Change is inevitable, but when life-altering change happens in the world of parenting a child (or two) with special needs it somehow seems easier to think of the ever-present change as normal.

Change is always present. We’ve grown so accustomed to it that it’s become a sort of cloak of armor that we use to sure ourselves up for whatever is coming next because whatever it is might mean life-altering change.

Change is our one constant.

In March we’ll be celebrating 5 years of Gage’s new kidney; his so far, successful kidney transplant. For about 4 years we’ve been asking to reduce or stop the steroids Gage was on and for 4 years the answer has been “no.” They said, “He’s hardly on any, and it’s probably not impacting him at all.” or “It’s not done. Not a good idea.” The thing is, 60% of the people on prednisone after transplant do not need to be on it and the only problem with this is that you don’t know what 60% so many centers put all of transplant patients on it. Luckily, Quinnlin was part of a study and received drug infusions 8 weeks after transplant and so far, she’s not needed steroids. Since they are genetically similar, we decided it was a good risk to try to stop it for Gage.

So, he had a biopsy on Tuesday and yesterday we learned his kidney is stable (“borderline rejection” is the term, which is “normal” for most centers) and we can stop the steroids and watch labs over the next several weeks to see if there is a negative trend. We’re very excited about the chance for Gage to be steroid free.

We’re not 100% sure of what kind of impact steroids has had on Gage, but we’re fairly certain it has had some because no one can tell me they’ve had a good experience being on steroids. People have told me they rage, they’re angry, mean, emotional. Those are just about all the things that Gage felt, amplified, the year after transplant.

This is no small change for Gage, for us; the contemplation of him being steroid free.

Now we wait. In a couple of weeks Gage will have labs done and in a couple of weeks after that he will again and we hope that there won’t be any change. We hope his body won’t notice there is a foreign object in it and that we can trick it a while longer without steroids.

The biopsy, the wait, the removal of the drug and the waiting and testing and waiting and testing. And waiting. Waiting for change is normal for us and over the next weeks (months?) it’ll be important for me to remember that this is one of those things I can’t control. It’ll either work or it won’t but I can’t control it.

He may very well need to begin steroids again (change) and he may be able to live steroid free (change) and either outcome will not surprise us because rarely does something surprise us anymore.

It’s safer to know that things will always change. We just don’t know if it will be for the better.

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Posted in Gage's new kidney adventure, Raising special needs kids, What others take for granted | Tagged , , | 5 Comments

Scouting, Inclusion Policies and Special Needs

Posted on December 22, 2011 by Julia Roberts

I’ve been working on a post for a long time. I wrote about how Gage dropped out of Scouts here, and I’ve touched on Quinnlin’s struggles in her troop. I have a post up at Support for Special Needs about how and why we changed troops for Quinnlin recently.

Being a part of scouts for my kids has turned out to be a process more than destination. My daughter has been in Scouts since Daisy’s in Kindergarten, then Brownies and last May she bridged over into Jr. Girl Scouts as she entered her 4th grade year. My son was a cute Tiger cub and also progressed up over the years in Cub Scouts and crossed over to Boy Scouts last Spring.

Read the rest at Support for Special Needs

 

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Posted in A gripe, Plugging SfSN site!, Raising special needs kids, Tips for parents, families and friends | 1 Comment

Proof of Something Bigger Than Us

Posted on December 18, 2011 by Julia Roberts

So, there’s a kismet, coincidence, luck, God, the Goddess, or just plain unbelievable thing that has happened. To us. Our family.

Here’s the back story.

A month an a half ago, maybe two, the kids were being knuckleheads about something. They were whining…about what? I can’t tell you, but it was something like they had an Xbox instead of a Wii, or complaining about having a computer that wasn’t a laptop or some such nonsense. Honestly, the entitlement was palpable. So I decided this year would be the year we reach out and help some other kids. Being particularly partial to kids in foster care because of a lot reasons like some friends are foster parents, or adoptive parents out of foster care or because I honestly believe we’ll be foster parents one day, I decided we would support a charity I knew about called Children’s Restoration Network this year, both financially and with our hands and time.

I called them over a month ago to sign up…one way was providing gifts for kids in shelters and the foster care system. Another way was to help wrap the 7 presents per child of the over 2300+ kids they were serving and another was to deliver the gifts to a group and provide dinner or a party or something as simple as pizza and wings. We decided to do all three.

So in lieu of sending out the 200 new year’s cards this year we took that money and bought $300 worth of $25 and $10 gift cards to teenagers — the group most in need for gifts/donations. Then last week I got a call from someone in charge who said they had five smaller group homes with kids in foster care we could deliver presents and dinner to; he started naming them and I quickly chose the one closest to us and the hardest to get support for…a group home of teenage boys.

So we arrive with a couple of hundred other people (after picking up Q from a sleepover and also taking a 1 block detour and having to turn around) to wrap gifts this morning. This is how it works; you sign in and they send you to a line so you can get kids’ ages/names and their wish list. They do this by seeing how many are in your group to help and with 4 of us they gave us a small group of kids. Easy enough.

The warehouse is organized with unwrapped gifts by gender, age, and price range. There is one person who sits there to hand out $10 and $25 gift cards for the older kids who really want specific items, or higher priced items. Along one wall, sit racks of clothing by gender and size. Stacked under the clothing are boxes of new shoes.

It was impressive.

We signed in and dropped off our gift cards and went to another line to get names where a staff person joyfully hands us and envelope and directs another person to tell us what to do. They explain…each child will get 7 gifts. Two of the 7 will be a batch of 4 books and a game. The other 5 gifts will be valued in ranges of 1- 3 stars. But you know what? Teenagers want expensive stuff! And it’s hard to find what they really want, the pressure! We all got involved and the kids were great about running back and forth and retrieving and returning gifts. They verify your 7 gifts and you wrap them, label a large trash bags and put the child’s gifts, wrapped, inside the bag. The bags will be organized and volunteers will pick up and deliver them next week.

The thing about this experience that is really unbelievable? There were hundreds and hundreds of envelopes enclosed with names and wishes. HUNDREDS. There were at least 200 people there to volunteer and the staff handed me an envelope, completely random, with the names of 5 kids.

We were handed the envelope containing the names and wishes of boys in a group home. The home we were assigned to a week prior and which we had already planned to deliver  gifts and a big dinner to next week (not sure what kind of dinner yet until we speak with the group home parents).

I don’t know what the statistics are on the probability that we would get those 5 names out of 2300+, in a thousands of square foot warehouse with a couple of hundred other people. You know they don’t even hand out all the names in one day. They hold gifts back and restock the gift areas and hand out more envelopes of names over the 4 day period. I don’t know about you, but I think that is a Higher Power at work.

To freak me out. I mean completely Freak. Me. Out.

We’re taking it as a sign that we should do more. There are home requests (TV, dvd player, Playstation 3, neutral curtains) too, and we’d like to reach out to our friends and see if they’d like to help with any of those items or giving an extra gift for each of the boys. There are 5 boys between ages 13-17. We’d like to get backpacks for them with some extras…maybe spend another $50-100 on each young man. Interested in helping? I just have a few days to get everything together…so email or comment and I’ll be in touch!

Couldn’t hurt to ask and after all of the help we’ve received over the years it’s great to show the kids (who’ve benefited from much generosity) how to help other people, now that we’re able. Join us?

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Spoken in the Mutant Family Household

Posted on December 15, 2011 by Julia Roberts

In the car talking with the kids about houses and garages and carports

Quinnlin: “Carports sounds like girl parts.”

————-

Again with discussing houses.

Gage: “You know, the shingliers.”

Me: “What are you talking about?”

Gage: “You know, the part with shingles over the door.”

Me: “The overhang!”

Gage: “Shingliers sounds so much better.”

————-

Quinnlin: “Say what.”

Me: “Chicken butt.”

Quinnlin: “Say where.”

Me: “Um…okay.”

Quinnlin: “No! You’re supposed to say chicken rare! Like cooked rare.”

————-

Gage: “I don’t understand why you can’t put metal in the microwave but the sides are metal. That does not make sense.”

————-

Gage: “You need to get up and cook us dinner.” (grin)

Me: “Haha. You all know we’re all going to pick up for 5 minutes each night.”

Gage: “Then what are you for?” Pause. “Besides cooking I mean.”

Longer pause.

Gage: “And loving us.”

Me: “I see you slid that in.”

Gage: “Yeah.”

————-

At dinner we’re all talking about how long we’ve been married.

Me: “It’s 17 years right?”

Julian: “No, it’s 18 in June.”

Me: “But we celebrated 16 last year. Okay, 1994, 2004, 5, 6, 7, 8, 9, 10, 11, 12 (counting on fingers). Crap. It is 18.”

Julian: “We celebrated 16 twice.”

Me: “I don’t remember 16 being so great we had to celebrate it twice, do you?”

Julian: “No.”

Me: “So we basically just missed a whole year of our marriage.”

Julian: “We’re so happy we didn’t even notice.”

Julia: “Yeah, that’s it.”

—————–

 

 

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Friday Photo Fun, PSA

Posted on December 9, 2011 by Julia Roberts

Gage & Quinnlin’s Team raised over $16,000 for the 2011 Walk for PKD. If you donated to our team, THANK YOU! And please know thank you notes are coming…

If you’d like to donate, there is still time until the end of the year at www.pkdcure.org/juliaroberts. There’s another way also…you can text a $10 donation, billed to your phone. Just text PKDCURE to 20222. Simple!

Those cute girls are Quinnlin and her sweetie of a friend, Jessie. Jessie’s mom, Sue, took this adorable picture! Thanks Sue!

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