thespecialparent.comSpecial People Parenting Special Kids

One of Katherine’s diagnoses is bipolar disorder. Even if you are uncertain of bipolar as a diagnosis for a child (and yes there is a group who doesn’t live with my daughter who thinks that bipolar in childhood is a misnomer) without question she has a mental illness disorder NOS (NOS=Not Otherwise Specified is a term frequently used in various mental illness disorders to bundle those who don’t neatly fit a specific definition for a disorder).

Because of this I think I am more acutely aware of the inequity in insurance benefits for medical needs versus mental health needs. All too often hospitalizations that Katherine needed for her mental health were cut off far more quickly than they would have been if she had been physically ill to the point where it endangered her well being. It’s unfortunate that discrimination enters this arena as well. It’s even more unfortunate that there is no parity in benefits because too often the cost of yo-yo admissions is likely costlier in the long run than it might be otherwise, not to even get into what this policy does to the individuals and their families when adequate care can not be obtained. That’s why I felt it important to let everyone I could about a very important bill that tentatively scheduled for vote on Wednesday March 5th.

The bill is called the Paul Wellstone Mental Health and Addiction Equity Act of 2007, or HR 1424. I think that Susan Resko, the executive director of the Child and Adolescent Bipolar Foundation detailed it best when she wrote:

If parity is not passed this year, there is serious concern that Congress will not take the matter up again for a number of years. Because of this concern, it is vital that mental health parity pass now.

The legislation addresses the discrimination in group health plans against persons with mental health or substance use disorders. This bill would expand the Mental Health Parity Act of 1996 by prohibiting group health plans from imposing treatment or financial limitations on mental health benefits that are different from those applied to medical/surgical services. The legislation closes the loopholes that allow discrimination in the co-payment, coinsurance, deductible, maximum out-of-pocket limit and day and visit limits. It applies only to group health plans already providing mental health benefits, and excludes (as does current law) health plans sponsored by employers of fewer than 50 people.

The Senate version of the bill passed the Senate by unanimous consent on September 18th, 2007. The House must pass a bill in order for legislation to move forward.

I would urge you to call your U.S. Representative Tuesday, March 4, to request that he/she vote “Yes” on the Paul Wellstone Mental Health and Addiction Equity Act, and “No” on any amendments to weaken the bill.

To locate your US Representative’s number, click here. When connected, ask for the Health Legislative Assistant. If you leave a voicemail, include your name and phone number.

Mental Health America recommends the following simple script if you are unsure of exactly what to say to your representative:

I am calling to ask that the Representative vote for H.R. 1424, the Paul Wellstone Mental Health & Addiction Equity Act. Parity is needed to end insurance discrimination and save lives.

If you’d like to read more about this life saving legislation you can check out the Campaign to Insure Mental Health and Addiction Equity . There is also a form here where you can email your individual representatives as well.

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While Katherine was off of school this past week she got to have a big treat and spend some time with her my in-laws. This is something she truly enjoys. As with any child I think time with grandparents is a great thing but for Katherine and my in-laws (who are her step-grandparents for clarification purposes) I think it’s a special blessing.

My mother-in-law has had a diagnosed seizure disorder for years and my father-in-law has been physically disabled for a good portion of his life. Because of this they each have some incredibly useful – first hand knowledge of dealing with these issues in relationship to being a teen. The teenage years are difficult enough without being easily singled out as different. I always thought that between being in a self-contained classroom and the fact that Katherine showed so little sign of picking up on social cues such as that I felt she was fairly well insulated from this harsh fact of life. I was wrong. (for the record I know that I’ve been saying that more frequently than normal. I guess with age comes humility )

When we came to pick Katherine up the other day, Felipe (my father-in-law) pulled me aside to let me know that Katherine had started a dialogue with them during the day. She wanted to know if when they were in school had kids ever laughed at them or teased them. A discussion followed where they described some mild instances of this in their past and tried to draw her out about why she was asking this question. Katherine backed off when they started to question her so they rightly backed off so that I could follow up later. I chose to wait until morning. I figured I stood a better chance with her well rested than getting all defensive and then agitated because she had just completed a long, stimulating day. I also figured I better get my head around exactly what I might find out and how the heck I was going to deal with it.

The next morning after feeding the kids I parked her brother in front of a Wiggles video and invited her to join me for a cup of iced coffee (a real treat in her book) at the kitchen table. I told her that Grandma and Grandpa had told me about the conversation and asked her to talk with me about what was going on. I assured her no one was in trouble and that I just wanted to understand what was going on.

Pulling teeth does not begin to describe the process we went through. She was really unwilling to give me information on what was going on. In a typical kid I’d think that they were afraid I’d go in and make the situation worse than it already was for them….with Katherine I don’t think that’s the case, but then again I thought she wouldn’t pick up on the social cues.

She went back to school at the beginning of this week and  I put in a message to the teacher to discuss this further but it really got me thinking about what exactly I might do to handle this situation. Aside from wanting to throttle any miserable child who was picking on my baby girl…no I’m not ACTUALLY one of those psycho parents that beats up on other children who I think did my baby wrong. I actually consider myself far more constructive than that.

I am pretty much the activist parent – I’d organize educational programs that the kids would attend on peer bullying and such and maybe even rally the school to start a peer mentoring program for typical peers to mentor and befriend a child from the special education program. Ok, so you can tell I’ve been thinking about this.

I guess my biggest question now is why wait. Not like I need another project heaven knows. Still and all why not get something like this started? Seems to me it should not even be that difficult to organize a club supported by the school which pairs mainstream students with a special needs “buddy”. This group of buddies could eat lunch together once a week maybe. Maybe go to a sport event together. There are groups out there such as Friendship Circle  who do similar things.

You can be sure I’ll be doing some more research on this idea over the next few weeks. If you know of programs that sound like I’m describing SHARE!! I’d love to have some more ideas to put together.

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In my article on January 26th of this year I talked about the use of positive reinforcement in the use of Applied Behavioral Analysis. I specifically talked about an Exceptional Parent magazine article which highlighted something called the Appreciation Station. I told you I was going to get one and try it out with Katherine and report back. So here we go.

I ordered this station and it arrived quickly. While I have to say the picture is of course accurate it does not do this product justice. In person it’s incredibly bright and inviting as was evidenced by BOTH of my kids reactions to it. Excitement doesn’t begin to describe the joyful chaos that ensued as we pulled our very own appreciation station out of the box. Both children couldn’t wait to touch and explore it’s every graphically pleasing detail. It’s well packed and has quite a bit of starter materials to set you on your way. The DVD included gives you a good basic overview of the components and the differing ways in which to use them.

Since our youngest is really still too young to start with this (at least for a few more months) we decided that for us the best way to utilize it was to make each color a different level of achievement as Diana Low, founder, described in the DVD. From my years of experience in knowing what are things that motivate Katherine, I made a list of ‘rewards’ that I felt would be exciting to her and then I made decisions about what each reward would be worth. I made coupons up for each of the rewards and put them into their corresponding capsules (we went from left to right with far left being the lowest value). In the lowest we have stickers, temporary tattoos, (which by the way I thought had no chance of motivating Katherine and is what she looks for the most at this point).

Each container at the lowest level also contains a paper with the words 1 point on them. She collects these to turn in for the upper rewards which each have a corresponding point value. While Katherine has a sheet that tells her what the possible rewards are at each level she gets totally excited about seeing what one is going to come out in her capsule!! I love this because I can structure which reward comes out based on something I might need to do anyway. For instance if we’re going to have a long day and I plan on having take out pizza or chinese that night – I line it up so that’s the reward she gets out of the capsule and Katherine gets a ‘reward’ out of it by choosing whether it will be pizza or chinese!! I also use it to make sure she doesn’t trade in her points and get “afternoon at the movies” on a Wednesday when the wait to redeem might kill the effect of the reward.

We’ve also got a new coupon that we’re implementing with Katherine with some good success. I call it the “Get out of Jail Free” card – which those of you who have ever played Monopoly will understand. Katherine calls it the Wipe Out Card. It’s a card she gets in the capsule which she can save until she has a day where she has a behavior issue. When she has the behavior – we use the card to remind her she has a chance to reverse things and still earn for the day. With the opportunity to know that if she pulls it together all is not lost for the day she frequently seems to be able to pull it together BEFORE it’s totally out of control and she’s allowed to ‘Wipe Out’ the episode and still collect for the day. She knows however that behavior that involves aggression, self injury or property damage can’t be wiped out. We are finding that Wipe Out seems to reduce our chance of reaching destructo mode by about 60% so for Katherine thus far it’s an incredibly valuable technique.

The lowest level rewards we use once a day but in the case of a particularly outstanding accomplishment I have occasionally recognized this with an additional token which is something like receiving an Oscar apparently (as far as Katherine is concerned).

As I think you can tell overall, I have found the Appreciation Station to be a WHOPPING success with Katherine. I look forward to implementing in in several months with her brother as well. The only real con I had is that at the start the capsules which hold the rewards were a bit difficult to open for Katherine. She had to give them to me to open which never really seemed to kill the joy for Katherine, but might in another child who had a physical limitation without the mental limitation. They have gotten easier with repeated use. I feel like the investment of $49.95 is incredibly well worth it.

I wrote to Diana Low last week to let her know I was going to be reviewing the Appreciation Station on The Special Parent. I was hoping I could get her to offer some incentive to our readers who might be interested in purchasing one. As my mom always said the worst they can do is say no. Hey I figured maybe she’d give us a few dollars off but she’s done even better than that – she has offered my readers FREE SHIPPING!! (A $10 value!) All you have to do is enter the code ‘PARENT’ where they ask for a promotional code. This is good for up to 10 stations so stock up day care centers and head start programs!!

Diana also has another product The Conversation Station which we’ve only just started to use and I’ll report back on in another week or two.

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As the parent of a special needs child I am frequently out and on the road at doctors appointments, IEP meetings and after school special activities. Rachael Ray may be the queen of the 30 minute meal – I’ve become the queen of the 8 hour meal! The crock pot is my hero! I throw a bunch of ingredients in the crockpot first thing in the morning, set the time I want it to cook (typically 8-10 hours) and off I go to only open it up in time to serve dinner to the hungry hordes. Weekly on Sundays I will share some of our family’s favorites.

As originally found on AllRecipes.com

PREP TIME: 10 Min
COOK TIME: 7 Hrs
READY IN: 7 Hrs 10 Min
YIELD: 9 servings

INGREDIENTS

• 4 pounds rump roast
• 1 (10.5 ounce) can beef broth
• 1 (10.5 ounce) can condensed French onion soup
• 1 (12 fluid ounce) can or bottle beer
• 6 French rolls
• 2 tablespoons butter

DIRECTIONS

• Trim excess fat from the rump roast, and place in a slow cooker. Add the beef broth, onion soup and beer. Cook on Low setting for 7 hours.
• Preheat oven to 350 degrees F (175 degrees C).
• Split French rolls, and spread with butter. Bake 10 minutes, or until heated through.
• Slice the meat on the diagonal, and place on the rolls. Serve the sauce for dipping.

We like to add cheese to ours – usually shredded mozzarella!!

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…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

Gymnastics Classes Bring Learning, Fun To Those With Special Needs
Gymnastics and Exercise class for children age 3 to high school give children the opportunity to participate in classes the exercise their minds and their muscles.

Disability Awareness Week
Idaho State University organizes a week of events to build awareness and create better understanding of people on campus and within the community.

Families to hold toy swap for special-needs children
A group of parents wanting a setting to hold a toy exchange for families of special needs children may have a larger event than originally planned.

Madison County special needs students to participate in ‘Big Hearts’ Pageant
The Extra Special People organization hosts and pageant spotlighting the abilities of people with disabilities.

Homeland Security Funds Grant for Special Needs
A federal Homeland Security grant is making emergency planning for people with special needs possible in this county.

For teen star of ‘Breaking Bad’, real-life disability is no obstacle
RJ Mitte provides unique authenticity to the disabled character he plays on AMC’s edgy new series Breaking Bad (Sunday, 10ET/PT)

For some parents, the emotional strain is greater
Dr. Rachel Bryant discusses the stages of mourning in relation to parents of children with special needs.

A first for Noelle; Schools’ behavior specialist honored for her work
District behavior specialist Noelle Neault honored for her outstanding work with youngsters in the Hanover Public School District.

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Those who cannot remember the past are condemned to repeat it.

-George Santayana

My newshound Johanna sent me another article that my father and she must have been reading at the same time because their emails on this article arrived almost simultaneously.

As many of you may be aware of by now, insurgents in Iraq have been using the disabled as human bombs. It was originally announced that these women had down syndrome but the article sent to me this morning announces that medical records now say that they suffered from depression and schizophrenia but no record shows them having down syndrome. Seems obvious to me that either is equally horrific and predatory but I digress.

News reports at the beginning of the week (and included in this past Sunday Paper) stated that the acting director of a Baghdad psychiatric hospital was arrested on suspicion of supplying al-Qaeda with the women to blow up the crowded market places. One would think this was a good step in the efforts to protect individuals who are potentially impaired mentally from being used in such a manner.

Overall the article seems as if it’s going to wind up being a clarification on earlier reporting that these women had down syndrome and some discussion of how their mental illness might or might not have made them unwitting victims of terrorists. Then you hit this one little paragraph that almost seems as if it’s an afterthought.

Worries about insurgents using mentally disabled people as bombers prompted the Iraqi government’s decision this week to begin enforcing a Saddam Hussein-era law to round up beggars and the mentally disabled. Iraqi officials said the mentally disabled would be sent to hospitals while beggars would be taken to the police, foster homes, juvenile institutions or their families.

I guess in a country not used to having freedoms this might seem like an acceptable solution.  I must remember however democracy is an evolution. I live in a country who was founded on freedom yet we too have had periods in our history where segregating populations for safety seemed like an acceptable solution to perceived threats. Certainly “Indian Reservations” and even more recently Japanese Internment Camps should be historical lessons that others should make sure not to repeat. I certainly hope that the American officials will work to convince the powers that be in Iraq that this is NOT the solution to their problem.

So often you read stories and think wow…what progress we’re making for the rights of those with disabilities. Unfortunately it only takes one article such as this to remind us how very far we still have to go as a world society in protecting the rights of those who can not necessarily protect themselves.

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It’s amazing what can be put through on a “reality show”. On the one hand, you have Angela Martin, American Idol contestant whose short stint on that show gave the opportunity to highlight Rett’s Syndrome and get this little known disability some well deserved face time. What’s that expression about no good deed goes unpunished?

So yesterday I run across the story of Big Brother on MSNBC. Big Brother is a “reality show” in which a dozen or so individuals are picked to live in isolation at a house under the constant glare of cameras filming their every move and interaction. These roommates win prizes by avoiding being voted out of the house.

Apparently someone felt that it makes good television to allow someone who supposedly does volunteer work with special needs individuals at an autism foundation to refer to them as “retards”. Well leaving the decision as to what is “good” TV for a minute, we know it got people talking. I’m writing about it, MSNBC is covering it, pretty much everyone seems to be covering it according to a simple google search.

And why not? Autism groups are rightly calling for apologies from CBS whose contention it is that the fact that they showed the outrage of other housemates somehow makes it ok. More interesting to me is that CBS goes so far as to say that while they find the statements to be offensive, they also in the same statement say they are not responsible for views aired on the program.

I’m writing this in the middle of the night and so maybe my brain is a tad bit addled but please explain this to me like I’m no smarter than a 5th grader (who by the way I believe already know the answer to this rhetorical question). How is it that CBS broadcasts this over their airwaves, can make all kinds of bleeps and bloops to cover any number of other offensive words but have no control over the views aired on the program?

I’ll be the first to admit, as the mother of a special needs child with a diagnosis of mental retardation – the whole retard thing just makes my stomach heave. The fact that this individual claims to work with individuals who may have a similar co-existing diagnosis makes it just that much worse. The fact that CBS seems to think that airing one person saying don’t say that makes airing the view somehow balanced and therefore more acceptable says to me that the whole lot of them over there need some people first language lessons.

Disability is Natural is one of my favorite sites for this information. They have a great printout located here. It seems to me the powers that be just aren’t getting it. I’d like us to all help them “get it” just a little bit better. I hope that maybe you’d be willing to help me in this effort. I’d like you to print a copy of the Disability is Natural People First Language Chart and mail it off to Mr. Leslie Moonves President and CEO at CBS Corporation. I’ll be adding a copy of this blog entry to Mr. Moonves for good measure. I don’t claim to have millions of visitors here to my blog. What I’m hoping for is a more viral effect….you know that you tell two friends and they tell two friends kind of effect and maybe CBS under the guidance of Mr. Moonves will be able to be more responsible for what airs as “entertainment” on his network.

If you are willing to do this Mr. Moonves can be reached at:

Leslie Moonves
President and Chief Executive Officer, CBS Corporation
51 West 52nd Street
New York, NY 10019

Let’s make sure that Mr. Moonves can educate a whole bunch of people on people first language by the time he gets done getting these letters.

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This month’s Ladies Home Journal has a small piece by Robin Roberts of ABC’s Good Morning America fame. Robin, if you were unaware has been recently diagnosed with breast cancer and is undergoing treatment. While obviously this is not a blog about cancer, her message in this piece I think can speak to all parents of special needs children.

She tells the story of the butterfly and how she feels it’s a fantastic analogy for how adversity being a valuable teacher, and how this adversity can leave us stronger than when we started.

Robin describes how the emerging butterfly beats its wings against the cocoon repeatedly to escape. She relates how if the butterfly were to be cut free of the cocoon and not win its freedom through the struggle it doesn’t gain the necessary strength to survive.

I have always thought of my daughter as a butterfly as well. My original theory sprang from the metamorphosis of a caterpillar into a butterfly and the entire struggle they go through to get to that point and emerge this beautiful and graceful creature. I do believe that Robin’s butterfly analogy still applies to all our children.

Each one in their own way may have a struggle, a cocoon from which they will escape. Beating their wings they slowly emerge having overcome one adversity or another. No matter how many cocoons your youngster must fight their way through it will make them stronger.

Let your child break through the cocoon. Be there to cheer them on, but let them be the ones to break through. To cut your butterfly loose from it’s cocoon would not allow it to win it’s freedom and would not give it the strength it needs to live it’s life. As the parent of a special child, sometimes it’s harder I think to watch the struggle. You feel like you need to help cut open the cocoon. You need to facilitate, but the breakthrough must be their own, hard won maybe, but their own.

Without question we are all blessed with some amazing butterflies.

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Well last night’s story on Extreme Makeover Home Edition was out of Louisville, Kentucky. It featured the Hughes Family. The eldest child in the Hughes family is an amazing young man named Patrick Henry Hughes. Patrick Henry was born with what the doctor labeled as multiple anomalies – he was born without eyes and his limbs (arms and legs) do not extend the way they should. Because of this Patrick Henry uses a wheelchair to get around.

Patrick Henry’s father Patrick John chose to take a night shift job in order to be able to stay at home during the day to care for him. Patrick John knew that they would not do the “typical” father/son things like sports and wanted to make sure that they had a special way of bonding together and introduced Patrick Henry to the piano. He showed a real affinity for music.

As he has grown he has excelled at the piano and has also added playing the trumpet and plays with the University’s Marching Band. Patrick Henry plays the trumpet while his father, Patrick John moves him around in his chair learning all the steps to the routines the marching band does. As a veteran marching band member, knowing the time and energy that activity takes, I marveled at the devotion of this father to his son.

Although Patrick John seems to worry that because he’s had a problem providing a better physical location for his son to live that he’s somehow fallen short as a father I can assure him he’s a hero in my eyes. The commitment that Patrick John has to his son and providing him the most normal existence possible is incredibly inspiring. Anyone who grows up to be a young man with such incredible insight into the world and such a positive outlook on life must have phenomenal parents.

Now they get to the house which is a nice enough house except for the fact that it’s completely unfriendly to Patrick Henry. It is not at all handicapped accessible and as he has grown it has impeded any ability for independence and grown increasingly difficult for his parents to assist him as well. He was truly a prisoner in that home.

Of course you know they now get sent on vacation while a house gets demolished and a new one goes up in what seems like movie magic 7 days. And of course it’s an amazing beautiful house furnished in grand measure by Sears and in this episode one of my favorite furniture stores – Havertys.

The house is a very open design as to facilitate Patrick Henry’s movement throughout. I think what I loved about this week’s design is how it designed with an “apartment” recognizing Patrick Henry’s need for additional independence. I also loved how all he has to do it get to the door and say open door and it opens – very star trek The zero entry shower and accessible sinks, stoves, and other features are fantastic as well. Of course every musician and composer needs their own in home recording studio so they set him up with one of those as well

This episode really touched me as I’m going to have to be looking at increasing Katherine’s independence over the next several years and the whole apartment idea seems like a pretty interesting idea. Obviously there are different needs but the whole idea of giving her independence while being nearby obviously isn’t new but gave me inspiration for her future as well as Patrick Henry’s!

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As the parent of a special needs child I am frequently out and on the road at doctors appointments, IEP meetings and after school special activities. Rachael Ray may be the queen of the 30 minute meal – I’ve become the queen of the 8 hour meal! The crock pot is my hero! I throw a bunch of ingredients in the crockpot first thing in the morning, set the time I want it to cook (typically 8-10 hours) and off I go to only open it up in time to serve dinner to the hungry hordes. Weekly on Sundays I will share some of our family’s favorites.

Zesty Beef and Vegetable Soup

This week’s favorite comes from the Better Homes and Garden Crockery Cookbook

Preparation Time: 15 minutes
Cooking time: 8 hours on low
Yield: 6 servings

Ingredients:

• 1 lb ground beef
• ½ cup chopped onion
• 2 cloves garlic, minced

• 2 cups pre-shredded coleslaw mix
• 1 – 10oz package frozen whole kernel corn
• 1 – 9oz package frozen cut green beans
• 4 cups hot-style vegetable juice (if you don’t like it too hot you can use regular)
• 1 – 14 ½ oz can Italian-style stewed tomatoes
• 2 Tbsp Worcestershire sauce
• 1 tsp dried basil, crushed
• ¼ tsp pepper

Directions:

• In a large skillet cook ground beef, onion and garlic until meat is brown and onion is tender. Drain off fat.
• In a 3 ½, 4 or 5 quart crockery cooker combine meat mixture, coleslaw mix, frozen corn, frozen beans, vegetable juice, UNDRAINED tomatoes, Worcestershire sauce, basil, and pepper.
• Cover; cook on low-heat setting for 8-10 hours or high heat setting for 4-5 hours.

Great served with cornbread!!

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