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Growing Into It

December 12, 2011 in Community Wisdom, Featured by Chrisa Hickey

Tim moving in to his room in the RTC

Two years, three months, and 11 days ago, we sent our son away.

We didn’t want to, and we did.  It had been 11 years since Tim’s first diagnosis.  Over those years there were 12 hospitalizations, 27 different med combinations, seven therapeutic day schools, one suicide attempt, six broken doors, nine different doctors, and a partridge in a pear tree.  We couldn’t get Tim stable at home, and the mental health of everyone else in the house was deteriorating.  We couldn’t take anymore, but I didn’t know how I’d live without him.  The glimpses of Stable Tim were priceless treasures of goofy humor, deep affection, and boundless compassion.  But those glimpses had become so few and far between that I feared that if we didn’t take this drastic step, I might never see them again.  He had just turned 15 years old.

When we made this choice it was a family decision.  Tim wanted to get his illness under control as much as we did, but he also said  he wanted to learn how to be independent from me and Tom.  He had literally never spent one moment, outside of school, without either me or Tom since he was seven.  It started because we couldn’t trust what he would do or what mood he would be in from one moment to the next, but eventually, Tim didn’t trust himself either.  He clung to us, even when psychotic, hallucinating voices that called us evil, screaming what they preached inside his head while pounding his fists on walls, furniture, even us.  So two years, three months, and 11 days ago, we checked him in to a long-term residential treatment facility, 120 miles from our home.

By and large, it’s working.  Tim has had more periods of stability over the past 10  months than he had the eight years previous.  He is becoming a skilled self-advocate, identifying his own symptoms and discussing treatment options and medication changes with his doctor on his own.  Puberty and stubborn psychosis still rears their ugly twin heads, causing waves of hypomania and depression that ebb and flow in sync with the changes of light and season.  We visit him at least one weekend a month and he comes home for overnight visits several times a year.  He’s learning not only how to live with this condition, but how to be an adult.  He attends school, has a part time job, and is responsible for his laundry, chores around his group home, and plays competitive basketball and track.

This morning, Tim called me before school.  I could hear he was pacing and breathing heavily.  He spoke loudly and rapidly, gulping air in between sentences, making the next words louder than the ones just before.  It took me a few minutes to understand the problem.  He’d had a disagreement with one of his housemates, and he was pacing and yelling and calling me in an attempt to avoid a full-blown rage of his own.  Over the next ten minutes I coaxed him to use his breathing techniques to calm him, and got him to stop talking until he was calm and no longer pacing.  Either Tom or I get several calls like this every month.  Several weeks ago the call was so desperate in the middle of a Thursday that I left work and drove the four hours round trip to hold his hand and sit with him until the agitation and anxiety passed.  Even with the army of therapists and social workers and psychiatric aides that interact with Tim every day, the tether between him and us is still very much intact.  When he first went away, I think he thought – and we assumed – that him learning independence from us meant he had to learn to live without us.  But today, two years, three months, and 11 days after he went away, he and I both know that growing up does not mean growing apart.  I will always know my child better than any specialist, and he will always rely on me to smooth out the rough edges.

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Editor’s note: If you’re on Twitter, I encourage you to follow her to get and give support. She amazingly real. You can find Chrisa here or her blog The Mindstorm: Raising a Mentally Ill Child. Please welcome her as a monthly contributor to our site, with her focus being pediatric mental illness.

Sometimes Funny is All We’ve Got

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

When our first child was diagnosed with  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?

Adjustments in Special Needs

February 23, 2011 in Featured, From Julia by Julia Roberts

We’ve recently been trying to figure out what we’ll do with our son for 6th grade. Well, that’s not exactly true, we’ve been thinking about it for about a year. Sixth grade is still month away but with private schools needing to know by April 1ish we needed to start looking in January.

We have a good option for our public school. It’s large though. The director of special ed is a lovely woman who came to our elementary school to meet with us and discuss our son’s IEP/needs. She didn’t see any reason why they couldn’t serve him there. We also visited a private school (to the tune of $22,500/year) that is for students with learning differences. My son had a lot of anxiety over our discussions and it manifested itself in self hatred talk and thoughts of harming himself. It was with 100% certainty that I knew the root of the anxiety.

Anxiety is a tricky thing in our world. With delays, mental health issues and the fine balance of keeping things from exploding at any given time I thought it’d be good for get him over to the middle school to see what it was like. He was  resistant to going to a private school away from kids he’d know but after visiting the large school he’s open to another school choice. When we left the building he said, “No, it’s too confusing.” When I told him one of the schools we are looking at has just 8 kids in the 6th grade he smiled and said, “Yeah, I’d like a small class like that.”

He obviously needed to see it to adjust his thinking he had to go to the school where most of his friends will go. I still think he could but I’m not sure he’d flourish. He’d survive it but not without unique challenges of being different in a school of 400+ 6th graders. We’re still searching and I’m sure we’ll come up with something because we just will.

We’re a resourceful bunch, special needs parents are, aren’t we?

We have a world of adjustments we make from the second we hear of an issue/diagnosis to selecting where we’ll live to making decisions of what to push for and let go of with educators, friends and family. We’re constantly making adjustments. I know when you have kids you know you’ll have adjustments. Add in the special needs factor and it just makes things more complicated.

I am not sure when I realized my life would be about making adjustments about everything…including a style of parenting that isn’t necessarily 2nd nature, maybe a year into learning about the kids recessive polycystic kidney disease. When things are stable and moving along I forget the amount of adjustments we have to make nearly everyday. Adjustments have become so much a part of what I do, it hits me when we have a big adjustment.

Like middle school. Middle School + Special Needs = ADJUSTMENT. In a big way. I’m not ready for it but with special needs we don’t really have time to get ready, do we?

What’s your latest adjustment relating to special needs?

Welcome to this week’s New Members!

January 21, 2011 in Around the Site, Featured by Admin Dawn

Wow, we are growing quickly! Welcome to all our new members!

Jean Kes: “I am a stay at home mom. I have my own home-based business in the coffee business. Everyone usually drinks coffee, latte, mocha, hot chocolate or green tea and this is healthy. I have 1 son who is 10 and has L1 Syndrome (genetic hydrocephalus) CP, non-verbal (for the most part) has a communication device, in a wheel chair. I am big advocate for special needs. Believe in alot of alternative therapies. My son get’s weekly massage to help with different issues we have done Hyperbaric Oxygen Therapy, Vision Therapy, Music Therapy. He does Conductive Ed in the summer a very good program to help with gross motors skills and all. We have done Ionic Foot Bath, and others. I like to think outside the box. We also like to do alot of natural alternatives with out the side effects to stay healthy. I go to Closingthegap.com which is a assistive technology conference plus others. I enjoy being home making $ so I can be there to help my son with what ever he needs.”

Lydia Roman

Brandi Fought: “I am the mommy to two wonderfully special children. Matthew is almost two with many diagnosis. Autumn is one and a half. She was born much too early and is paraplegic. We live our lives one day at a time, celebrating each and every victory!”

Emma Sterland: “I manage a website for parents, carers and professionals connected with learning disability. http://www.Netbuddy.org.uk is a free online resource with hundreds of practical tips and ideas on supporting someone with special needs.”

Stephanie: “I’m a stay at home mom to 2 kids. My youngest, Jack, is 17 months old and has special needs. Jack was born with congenital bilateral cataracts. He had cataract removal surgery and now wears glasses or contact lenses. He is legally blind, has microcephaly and major developmental delays. Jack is extremely small for his age and has been labeled with faiilure to thrive. He has been tested for chromosome abnormalities, infectious diseases, and metabolic disorders. Tests have come back normal, so we are still on the hunt for a diagnosis. In the meantime, Jack does OT and visual stimulation therapy.”

Kathleen Rainwater: ”

Single mother of three special needs children, two biological, “typical” children (now adults!), and one stray foster daughter. I chose this gig. My special kids were adopted. My three special kids are still at home: ages ten, eleven, and nineteen. It’s just now occurring to me that probably two of them will be with me for life. Some days, I’m very okay with that; some days not so much. It’s a rough road for us all, but I want it to be a terrific adventure. Kameron, the eleven year old, was a 25 week preemie with a grade IV bleed, crack-exposed; vented and trached for the first 3 years; now diagnosed with AVMs. He is very smart, funny, and can be annoying as heck – especially to his sister, Klaryssia. He also has CP and is DD and is considered a spastic quadriplegic. Klaryssia is the 19 year old; she has DD and mental health issues, but is pretty high-functioning, maybe around eight years old cognitively… Kobi is ten and only has some learning delays. He was also premature, but his main issues stem from failure to thrive and drug-exposure in utero. I don’t have much compassion left for their bio-moms. But, I love the children they made.”

Christine Patch: “Mom to 3 boys. Twins – William & Kevin born at 27 weeks in 1999 and Tyler was born full-term in 2005. The twins both had a Stage III brain bleed, only 1 requiring a VP shunt. They are developmentally delayed and have tested on a 2 – 5 year old level and classified as MR.”

Amy Fisher: “SAHM to son with hypotonia, delayed myelination, apraxia of speech & epilepsy. No dx – though have literally had every genetic test in the book – all neg./normal.”

Jennifer Kneice: “I have 4 children. 3 have some special needs right now. I love them all.”

In Real Life Connect Event in Atlanta

Meet Julia in person and get inspired by speakers Sue Boardman, MDiv, PhD and special education teacher Whitney Blackmore at our first (but not our last!) In Real Life Connect event! Our goal has always been to help you build relationships online and off so expect more meet up opportunities around the country this year! We would love to see you in Atlanta this spring! Get more information and register here. (This first ten registrants will get a copy of A Boy and a Turtle, Lori Lite’s relaxation book for kids!)

Children love to visualize or imagine filling their bodies with the colors of the rainbow. This effective stress-management technique also known as guided imagery is widely accepted and used by both traditional and holistic communities. This gentle but powerful technique stimulates the imagination. Visualization can have a positive impact on your health, creativity and performance. It can lower stress and anxiety levels. It can be used to decrease pain and anger.The colorful imagery in this story quiets the mind and relaxes the body so your child can manage stress and fall asleep peacefully. Relax with colors!

Remember our Thursday chat!

Each Thursday we have a live chat from 8pm EST. Our chat moderator, community member Michelle Howard signs off at 9pm but you are welcome to hang out as long as you like. Our chat is available to any community member at any time so feel free to set up your own chat time, too.

Avatar Issues

Our software has some crazy bug and we’re waiting for an update that will fix it. Meanwhile if you’re having trouble getting your avatar up there as the right size, you can email your image to Dawn and she’ll crop it and email it back to you so it’ll upload correctly.

Early detection key to mental health plan

November 12, 2010 in Special Needs News by Admin Dawn

Focusing attention on early detection and treatment of conditions such as anxiety and depression, including spotting them in children, is a key landmark in the B.C. government’s road map for long-term improvements to mental health.

Health Minister Kevin Falcon this week released the government’s 10-year plan toward improving the mental health of British Columbians and reducing drug addiction.

The plan — Healthy Minds, Healthy People — places an emphasis on children and families in response to research that showed early treatment and intervention can dramatically reduce problems later in life.

via Early detection key to mental health plan.

Mental health and children

November 11, 2010 in Special Needs News by Admin Dawn

It’s a subject that’s not talked about very often. However, it’s estimated that nearly 25 percent of American children will struggle with a mental health disorder.

Harvard clinician and author, Dr. Ellen Braaten, along with the American Psychological Association, has just released the first and only book to help parents take charge of their child’s mental health care. Watch Kim’s interview for more.

Watch the video at Family works: Mental health & children.

Mental health clinic to test new way of treating schizophrenia

November 10, 2010 in Special Needs News by Admin Dawn

A local mental health agency has been selected as one of 10 groups in the country to launch a new pilot program that would bring a more “patient-oriented” approach to the treatment of schizophrenia.

On Monday, Hill Country Community MHMR Center announced that it was selected along with nine other community behavioral health organizations across the nation to engage in an eight-month pilot program to improve the daily functioning of people living with schizophrenia.

“The approach is really centered on helping patients determine their goals, desires and dreams and developing an action plan for them to make those aspirations a reality,” said Linda Werlein, CEO of the center.

via Mental health clinic to test new way of treating schizophrenia [Kerrville Daily Times, Texas] | Clinical News.

Wish List Giveaway: Rody Gets Meds

November 9, 2010 in Giveaways by Admin Dawn

As part of our Week Before The Week of the Great Big Wish List Giveaway we’re giving away two Rodys EVERY SINGLE DAY THIS WEEK!

This week’s giveaways are the only giveaways open to non-members!

Each day this week we’re giving TWO Rody Hop-A-Long toys from Gymnic! We want to get the word out about some of our great forums and so we’re letting Rody (and his friend, our site mascot Quinn) introduce you.

Medical Special Needs

Rody needs his medicine

Today we want to let you all know about our Medical Special Needs group!

The front page of all our groups is a place for quick updates and to see what’s going on. It’s a little like a Facebook wall. Someone can post an announcement and other people can reply. But it’s not as handy for in-depth discussion as a messageboard, which is why all of our groups also host a forum. Here’s a direct link to the Medical and Special Needs Forum

You can also see the event calendar, which is a great place to post workshops, webinars or livechats you want your fellow Medical and Special Needs members to know about.

Want to meet the other members? Here’s the roster!

You can upload documents to the group, too, like a great hand-out a teacher has shared with you or a flyer you think might interest others in the group.

Finally, like every group, the Medical and Special Needs group has its own livechat! You are welcome to use this anytime. You can schedule a chat (remember to post it to the event calendar!) or spontaneously check in if you realize other people are around.

Now here’s how to win a Gymnic Rody!

Rody is a fantastic Italian toy that a lot of therapists use for trunk work, balance, strength and fun. Rody isn’t just for kids with special needs — he’s fun for all, and well, he’s cute, too! Made of sturdy latex-free vinyl, Rody can hold up to 300 lbs, which means big brothers or sisters and even moms and dads can play with him, too. You’ll need a bike pump (or heck — the free air pump at the gas station) to inflate him but once you do he is ready to bounce!

The Rodys we’re giving away are all the pretty peach with red spots you see in the picture at the top of the entry and here’s how YOU can win him!

  • • First of all, have you already commented on a previous post? Then lucky you! Anyone who has already commented on a post from earlier in the week gets an automatic RE-ENTRY in every single subsequent Rody giveaway this week! That’s right, we’re rolling your entries over! (We decided to do this after consulting with some of our members and they said YES! DO THAT!)
  • Comment on this post! Commenting on this post lets us know that you want in on today’s Rody drawing!
  • Tweet this tweet (we’ll be tracking them so you can just copy and paste this):
  • I want to win a Rody! http://bit.ly/wish-list-giveaway #wishlistgiveaway
  • Blog it! If you have a blog, write a post about our Great Big Wish List Giveaway and link is up
  • Be a member! Members get an additional entry!
  • Answer this question at the forum!

After this week the giveaways are only open to members. That means if you want to enter to win an American Girl Doll, a light up Ferris Wheel from K’Nex, a set of six adorable Audubon birds beanies from Wild Republic or one of the other 70+ toys and gifts we’re giving away, you’ll need to be a member! Why not become one today and get ahead of the curve?

Fussy newborns may have more troubles later on

November 4, 2010 in Special Needs News by Admin Dawn

At just 1 month old, infants show signs of temperament troubles that can turn into mood and behavior problems later in life, a new study suggests.

Infants that are fussy when they’re three to four weeks old are more likely to develop childhood mental health problems including anxiety, attention deficit hyperactivity disorder (ADHD) and behavior problems, the researchers say.

“It turns out, you can predict very well from infant fussiness to later problems,” said study researcher Beth Troutman, a professor of psychiatry at the University of Iowa.

via Fussy newborns may have more troubles later on – TODAY Health – TODAYshow.com.

New MRI scan will help children with mental illness

November 4, 2010 in Special Needs News by Admin Dawn

By using state-of-the art imaging technology, new research at the Alberta Children’s Hospital aims to better understand and treat mental health disorders in children and teenagers.

Dr. Frank MacMaster, an American researcher known for his groundbreaking study of brain biology and chemistry, says he was drawn to Calgary by the prospect of continuing his work with a third-generation MRI the hospital will soon install.

“Without these imaging tools, the only way to study brain biology was during neurosurgery, when you’ve got the skull cracked open, or post mortem, when it’s too late,” MacMaster, the new chair in pediatric mental health at the hospital, said Friday.

“We just didn’t have the tools until now.”

via New MRI scan will help children with mental illness.

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