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Fears and Raising Children with Special Needs

October 26, 2011 in Featured, From Julia by Julia Roberts

When we are sharing here on Support for Special Needs about the unique challenges of raising kids that have differences there’s always someone to offer a different perspective. In doing so they make you think about how grateful you are there is someone who truly understands.

We all have different perspectives (obviously) on what to focus on, what motivates us to keep going each day (when the day kicks us in the teeth) and in what way we present our stories (public or private, positive or negative). We all have fears. Some of us share our fears; some have them but are afraid to share them.

During my son’s battle with kidney failure, a botched surgery, kidney transplant, and subsequent frightening depression I had many fears for his safety, for his general well-being, for his life. I didn’t voice my fears about him dying very often and I tried to shut them away during the period of time he was suffering but it was an underlying tone for me. My husband wasn’t able to voice it, think about it, or hear me talk about it either. It was a hard time to have those fears.

Some fears that I and other community members have…

  • -Ā Ā Ā Ā Ā Ā Ā Ā Ā  Financial security, for us now and our children in the future. Keeping insurance, hitting maximums before our kids are 5 or 10 and the many out-of-pocket costs of taking care of kids with special needs. Many of us areĀ  discussingĀ  special needs trusts before our kids are five.
    -Ā Ā Ā Ā Ā Ā Ā Ā Ā  Independence into adulthood. We want our kids to have as much independence as they are able to gain. We worry for their safety and happiness.
    -Ā Ā Ā Ā Ā Ā Ā Ā Ā  Bullying. We worry our kids that their developmental, physical or mental challenges will be the target of bullies. For me, this started at kindergarten and continues…
    -Ā Ā Ā Ā Ā Ā Ā Ā Ā  Change. For some of our kids change can be extremely difficult to navigate. Early on we learn that they don’t like natural transitions in the world and we grow to fear it because adjustments are difficult. For parents, sometimes change means a progression in a disease symptom, medication, treatment, or arrangement. Sometimes we fear it. Greatly.
    -Ā Ā Ā Ā Ā Ā Ā Ā Ā  Acceptance. Tied to bullying of course, but acceptance is huge worry for many of us. We want our kids to grow up being able to experience typical things everyone wants to enjoy…friendships, inclusion in social events, feeling welcome in newĀ  groups of people, sleepovers. Acceptance.
    -Ā Ā Ā Ā Ā Ā Ā Ā Ā  Education. We want what is our child’s right. Reasonable access to education. We want a compassionate education team, we want services that will help them, appropriate classroom settings and people to treat us parents/caregivers as part of the team. We want everyone to help our kids reach their potential. Period.
    -Ā Ā Ā Ā Ā Ā Ā Ā Ā  Abandonment. Sadly, the acceptance item on this list extends even to people who love us. Our kids aren’t ā€œperfectā€ and some come with a lot of management; behavior issues and plans, problems with eating, dressing, toileting and speaking. We want the people who love us to try to understand that we’re doing our best and we don’t want you to abandon us because it gets rough. It gets rough a lot.
    -Ā Ā Ā Ā Ā Ā Ā Ā Ā  Relationships. Fearing change in relationships because of the relentless needs. Along with that I fear losing myself. Period.

Community member, Michelle Howard said, ā€œI hate the word fear. It has too much power over people.ā€ While fear can permeate my subconscious it doesn’t rule my life. For me and most of the parents of special needs kids I have contact with letting fear rule us would mean that we have to pull energy from the job of managing the special needs our kids have and our time is too precious.

I’ve learned to live with fear. It’s something the forces me to grasp my reality and it’s sometimes what propels me to seek out and appreciate the joys.

Originally published in January 2011

Sometimes Funny is All We’ve Got

August 3, 2011 in Featured, From Julia by Julia Roberts

When our first child was diagnosed withĀ  developmental delays we didn’t know what hit us. We’d gone from having a perfectly healthy 8 month only child to one that was in 7 therapy appointments and “at risk” as defined by the state’s early intervention program.

Those were not fun times. While we were still acting as a regular family, we were focusing on getting used to our new normal. Which turned out to be not very easy. It did happen eventually and we were happy again.

But we didn’t know what we didn’t know.

A little over a year later we were faced with our new baby’s diagnosis of a life-threatening kidney disease and 3 months later our son’s diagnosis came. It was not a happy time in our house. In fact, I clearly remember doing anything but laughing or having fun…for a very long time.

That was the year I refer to as “The Fog” and I remember it well. Back then, before I was blogging at Kidneys and Eyes to release some of the pain and hurt and experience, I would send out batch emails to close family and friends to give them updates. Those emails were excruciating to send because I didn’t want to sound too depressing, but honestly? Things were depressing around our house. We were still getting our special needs parents legs firmly planted on the ground. So while I was kind of pretending to be okay, things became okay. It was a “fake it til you make it” kind of thing.

During that time my beloved and I would test out our funny bone on each other. We’d say something totally inappropriate outside the walls of our brick ranch home and slowly but surely we started to believe. We started to believe in humor again. It didn’t happen all at once; it slowly crept back into our lives.

Over the years as we cried about the progressing symptoms of kidney failure, developmental delays and bad reports all around us, we learned that we could laugh. I remember the night when I got a call on my cellphone telling me it was time to get our son in to talk about a kidney transplant; his lab numbers had taken a turn for the worse and stayed there. When I got home my husband took one look at me and he knew something was wrong.

The kids were eating dinner at the kitchen counter and while I was crying they were screaming for milk (or goldfish or yogurt) and we were both trying to hid our tears. I am fairly certain I sighed heavily and rolled my eyes because the kids have the audacity to ask for more to eat or drink and I said something like, “Ugh! We can’t even talk for one minute about dialysis and kidney failure!” My husband looked up at me and said, “What, don’t you think mortality and milk mix well?”

I agree, it’s not THAT funny, but it did come at a good time. We talked about how life just keeps moving on; the kids still have to eat. So, we just moved on through two kidney transplants (mixed in with dialysis, depression, mental health issues and trauma) and here we are, trying to get ready for the next crisis (which we know will always come).

Sometimes we make fun of our life and our kids to left off steam. Sometimes it’s because we need a laugh. Sometimes it is because some of the things they do because of their disabilities are really funny. Sometimes it is because if we didn’t we would cry.

I like to make fun of what we say and I chronicle it on my blog by titling certain posts with “Spoken in the Mutant Family Household” because it’s my way of embracing our inner (inappropriate) funniness (Sometimes about the kids! And their disease!) and our outward mutantness.

There’s hardly a better way to live this life than to laugh at it and that includes laughing with (and at) my mutant children. I have to admit some days it is the only way we can live this life.

Does humor get your through the day sometimes?

The Mounting Paper

July 28, 2010 in From Julia by Julia Roberts

A little while ago I had to file applications for the kids for a special program in my state for kids who aren’t covered by the Medicaid. Gage and Quinn had been kicked off the policy because they weren’t sick enough, often enough. They didn’t require (planned) hospitalizations nor “skilled nursing” and so that was the check box that kicked them off of the program.

The applications I was filling out required a copy of the denial letters (from 1 and 2 years ago) from Medicare, current IEPs, a letter from the kids’ doctor stating diagnosis and an application for the program for each child. While I hadn’t filed any paperwork over the last 8 months I knew I had all the documentation. Since I was going through the binders anyway to find previous year’s paperwork for the application I decided to get the loose paperwork put away. I spent 2 1/2 hours of a work day separating the paperwork into 5 piles; medical for each child, education for each child and one very large stack of medical bills and EOBs (Explanation of Benefits) from the insurance company. I’ll still have another few hours of getting it in chronically in order, 3-hole punching, and putting in binders.

For me the easiest way for me to fight against the growing amount of paper is to pile it up until I have an extra 5-8 hours to organize it which comes about every 6-8 months. I’ve found binders the easiest to deal with because I can flip easily between the sections when I’m trying to find something quickly (usually sitting in an appointment with a doctor). I file so current papes are on top and therefore most relevant to current care. Doctors marvel at the binders and sometimes they are a little grateful. Like the time our son was being evaluated for a kidney transplant and their computer system wasn’t allowing him to look at the previous lab reports.

Turns out that was the day to have them, because as the doctor’s eyes were widening he was explaining that the lab reports I had compared to labs they’d taken that day just hours before meant our son would soon start dialysis. He did, just some two weeks later.

I get the paperwork from doctors as I go and throw them in a pile until I need them and have time to hole punch and file. I didn’t start out collecting paperwork as I went. It took me about 6 months into the special needs world to know that having all their medical documents in my possession would work in my favor. It must have been the multiple copies of all medical charts/reports/results/letters for each of the kids that I needed to file for funding. Or maybe it was driving to multiple offices to collect them because I was on deadline. Then I began to notice it was just easier when I was at the doctor to get what they had in the file (and they won’t usually charge you for a copy here and there, but they will when they need to copy the entire chart for you).

Being organized takes practice and I’ve found raising special needs kids makes you practice a lot.

The Wide and Swift River Grows

June 23, 2010 in Latest Articles by Julia Roberts

Gage and Quinn at the RiverI’m a pretty social person. I generally like to be around (nice) people. I like the give and take of friendship. I like to find new friends that I have common ground with and I like to build friendships. I work hard at maintaining friendships.

Single or married, I’ve always had time for my friends. Yes, it changed when I became involved with my then boyfriend and future husband, but I still worked hard at my friendships.

Then kids came and The Fog (a time I refer to as the year after our kids were diagnosed with a life-threatening kidney disease) set in and I wasn’t so hot in keeping in touch and connected to my friends.

But you know what?

They stayed connected with me. My friends surrounded me with love and compassion and understanding and prayers and tangible help. They helped by showing up to alleviate what burdens they could (grocery shopping, laundry, dinners) and so for a long time they carried me. The often still do carry me when I need it but I’m better at balancing the give and take nearly 9 years into our new normal life.

One of the perfect things about the Internet is the opportunity to widen the community of people who can be supported and who can support. Community is the basis for this site when it was dreamed up by my friend, Dawn and myself.

Our friendship grew out of the Internet. I’d found her through a maze of infertility blogs when she was adopting her second child. In one of the crazy twists of Internet fate we connected. Through watching her adoption through her blog, then working together in freelance writing, then through my kids’ kidney transplants and everything in between there that was laced with happiness and turmoil.

Other friends throughout our journey include a best friend, friends who behave like my sisters as aunties to my kids, sisters who are friends, friends who knew me when I had another last name, friends from an old neighborhood, friends from a new one, women with kidney-challenged kids, women who work for the non-profit we’re involved with to offer support to other parents like us.

All of the friends in my life have a unique space to fill and I in their lives. Our friendships are like a river; wide at some parts, narrow at others. Wide and narrow when needed but always flowing. Like the river that can be narrow for miles, friendships change because our lives change and our needs of each other change.

This site is the opportunity to build a broader community. A chance for us to welcome more information, resources, support and friendship into our lives. In the bigger sense of community I hope that other resources for families of kids with special needs join us here and that we can engage in relationships as important as my friends who’ve supported our family over the years.

Thank you, thank you for visiting, for registering, for engaging with each other and with me.

I hope, oh how I hope, that our river grows wide and runs swiftly.

The Not on MY Face Sun Safety Giveaway

June 7, 2010 in Giveaways by Julia Roberts

Sun Safety Giveaway GoodsWe took our son to the beach for the first time when he was about 7 month old. We didn’t know then that he was sensitive to a lot of sensory input. We didn’t know that having his feet on sand was pure torture. We didn’t know that lotions and textures were an issue for him. He couldn’t express it then but as he got older (about 18 months) we started to figure out many “normal” things bothered him. Loud sounds were upsetting, bare feet on grass, eating turkey, that sort of thing.

So when it came time to lube up for the pool or the beach we often had a battle (frankly, he’s 11 and he still rolls his eyes and protests but I do think that is just him being a kid). We were fans of hats, shirts and anything else that kept us from having to spend more time putting sunscreen on him, which we religiously did because he was a very pale kid.

When he was around 4 we discovered that if he could control some of it it helped so we were thrilled to find the sunscreen sticks. By then he didn’t so much mind us putting it on his body but he never really took to us getting it on his face so the stick allowed him to do it in a more controlled, safe way.

Adorable QuinnNow that he’s post kidney transplant and on drugs that make him more susceptible to future skin cancer we’re even more thankful for devices and products that let him be outside in the sun safely. So part of our Sun Safety week will be this giveaway of sun products. A towel, sunglasses, sunscreen and sun stick (we love them and have them all over the place) and just to add to the mix a fun and helpful thing, too. There’s a canvas doorknob bag (I made it! I know! Crafty! It’s a curse!) and fabric markers for you and the kid/s to decorate. Leave the bag on the doorknob as a reminder to put sunscreen on or hanging there makes it easy to grab on the go.

It’s worth about $35 bucks. Can’t beat that right now during the summer, right? Make sure that you are a registered user and leave a comment about a favorite summertime activity and we’ll chose a commenter on Friday, June 11, 2010 5:00PST.

* That main picture for this article is of my daughter poolside and here’s the whole version. Yeah, see her curled up toes? She was already in therapy a long time by then! She wasn’t moving then and so it was easy to be at the pool and plop her down with stacking cups of water. Ah, the easy days!

Building Relationships with Special Ed Teachers & Schools

May 19, 2010 in From Julia, Latest Articles by Julia Roberts

As we are ending our school year, I’m thinking back to the last several months and what our family and most especially our kids have endured. A life-saving transplant for our daughter and days/weeks missed from school for medical testing and recovery and a mental breakdown for our son that culminated in his hospitalization in a psychiatric hospital.

Our public school, who already knew us well because of 6 years of education for our kids, readily supported us through it all. From administration to teachers, they all took an active part in our family’s recovery from the kidney transplant and subsequent mental illness diagnosis and treatment.

I’m often asked about our relationship with our school and special ed department and I am the first one to sing their praises. They are a dedicated, caring group of people with whom we would have likely not done as well as a family in crisis (or two) without their support.

The relationships are built out of mutual respect; their respect for me as the kids’ parent and mine for them as experienced educators. My relationship with them has grown and changed and I’m proud of how well we work together for the kids.

There’s nothing mystical about how well we work together. Like I said, mutual respect for each other.

But it’s not been without planning, tenacity, communication, and giving.

What I have done and what do I do to keep our relationship going in the right direction?

- I respect their knowledge. I have not taught children or children with challenges in the classroom. And in fact, could not, so I am not silent about that fact. I often give them sincere kudos for what they do and what they know.

- If I have a concern I put it in writing and if I feel we need a meeting, I ask for one with the parties that should be involved. I try to have a list of items I’d like to address and I try to send those ahead so they can prepare. I also will bring a list of questions and concerns with me.

-If I have a concern about a certain aspect of learning (we recently asked the school system to do psychological testing for Gage because it had never been done and since he was hospitalized I wanted to see how they could better help him learn) I ask them for options and I am usually prepared for what is available (but not always!).

- I try to make it convenientĀ  on them for meetings. I try my best to be flexible, even if that means I have to be there at 7:15am (if you know me, you know I don’t like early morning meetings!).

- I tell the administration about the good work the teachers are doing. I send notes thanking teachers after successes. I have also sent thank you notes after discussions for changes in IEPs and for their willingness to try anything (the number of changes they’ve made for Gage would amaze you.) that might help my kids learn. I thank them a lot for being open to ideas!

- I give thoughtful gifts. I don’t spend a fortune. I might make something or buy something small, or include a gift card but it is always accompanied by a heartfelt note from me expressing how grateful I am and sometimes a picture from one of the kids.

- I’m involved in school. There are many ways I could be involved with school but I choose to handle Teacher Appreciation Week. It’s a week long thank you of trinkets and gifts and lunch and I spend a lot of time planning and executing it (with a co-chair, thank goodness). And even though it’s for all the teachers and staff, I often think of it as my personal way to show out team my appreciation. And my work there doesn’t go unnoticed. It means something to them that I am involved. I am not saying everyone needs to run a week long event, but there are many small things you can do all year long for the school…make copies for the classes, distribute mail, cover the front office phones once a week during lunch, just to name a few. Me being up there and visible makes it easy for quick conversations. It shows I’m engaged.

I do not have an adversarial relationship with anyone at the school. Have I hit it off completely with everyone? Not necessarily. Have I rubbed people the wrong way? Um, yes. But if I follow my rule for treating them with respect that usually gets us through and we come out better in the long run working together.

The Sheepy Sheep for Sleep Giveaway

May 10, 2010 in Giveaways by Julia Roberts

Say that 5 times fast! I can’t. But I always did slur my S.

Back in September, a week or two before my daughter Quinnlin had her kidney transplant we received an anonymous package at my office. It was from the Therapy Shoppe and inside I found a sound machine sheep and various little games and finger toys. I remembered about a blogger friend (love our Internets People) who’d once referenced the finger toys and I guessed correctly the package was from her.

The best thing about the Sleep Sheep, who Quinn named Sophia but mostly calls Sheepy, is that is has calming sounds. Quinn’s favorite? The ocean, which has a whale sound. There are 4 sounds and to Quinn the mother’s heartbeat is “weird,” even though I explained before she was born that she loved the sound of my heartbeat! The rain and white noise sounds are pretty real, too.

Quinn’s story was told by a local reporter and in the final editing you can hear her say on tape, “Where’s my sheep!” Sheepy went into surgery with Quinn (mask and cap, of course) and was there at her head when she was in recovery. I tweeted a picture of her, just an hour after surgery. Sheepy has been a part of our lives since, sleeping with Quinn every night, makes all overnight road trips and has been to a number of clinic visits where she has her labs drawn. It’s extremely soft and has a little texture. I don’t think we’ve changed the batteries that came with it, I guess in part to the automatic shut off timer.

The Therapy Shoppe loved that Quinnlin loves Sophia/Sheepy and wanted to share one with our community. We bet your child (or secretly, you) would love to snuggle up your own Sleep Sheep. To thank them we gave them a blog ad.

To have a chance to win your own Sheepy, you need to be a member (so register if you haven’t) and then leave a comment here about a dream, good or bad, from you or your child. It doesn’t have to be long, either. We’ll do a randomizer drawing again. If I were going to enter, I’d just say, “When Quinn was four she had a dream about scary flying monkeys and still remembers it.” But for you folks and the purpose of finishing a funny story, I’ll add that two weeks later her aunt gave her a book about monkeys and Quinn thought that was very mean. Said aunt did NOT know about the scary monkeys dream and we still laugh about it today. And we still have the book, titled Naughty Monkeys!

You have until Friday, May 14, 2010 at 5:00CST to register for our site and then comment for a chance to win.

If you don’t win, don’t worry, you can own your own Sheepy for what I think is worth way more than $25.99 plus shipping. But spend some time on their site…they have some cool stuff. Especially for my anxiety-ridden boy the fidgets (calming toys) came in handy for school.

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