thespecialparent.comSpecial People Parenting Special Kids

I have received dozens of emails from parents who are new to this whole experience of being a special needs parent. They are desperately seeking information, validation and the knowledge that they are not alone. My experience says for every one of you that gathered up the strength to write me, there’s dozens and dozens more that are just lurking on the sidelines. It’s ok. Reaching out is hard. Especially in the wake of the news that your child has a disability. Or as one emailer today told me, she just got the news that her unborn child WILL have a disability.

If you might be one of these parents, let me assure you indeed are NOT alone. The experiences you are having right now are to be expected. Today I offer you links to two articles that I think would have proved helpful to me when I was starting this journey if they were available.

• You Are Not Alone: For Parents When They Learn That Their Child Has a Disability by Patricia McGill Smith

• The Unplanned Journey: When You Learn That Your Child Has a Disability by Carole Brown, Samara Goodman, and Lisa Küpper

While I referenced it in my first blog post I think it bears reprinting. New parents… Welcome to Holland

WELCOME TO HOLLAND
by
Emily Perl Kingsley

(c) 1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

I’ve recently stumbled upon the blog, My New Normal (http://mynewnormal.blogspot.com) written by a mommy with a special flair for bold honesty which I appreciate so very much. While she is the mommy of a beautiful 3 year old daughter and I am a mommy of a beautiful 16 year old daughter both with significantly different disabilities, we are sisters in this sisterhood of special moms. I have never written to her, I have never talked to her. To this woman I am merely a statistic on her stat counter.

I read a post she made the other day and just couldn’t resist sharing it with you all.

She calls it – Things not to say to a special needs parent.
I call it brilliant! Please check it out by clicking here.

Are there things you would add to it? Are there things you have had said to you that should just never be uttered by a human again? Share!!

Growing up I was fascinated by Helen Keller. I read EVERYTHING I could get my hands on about her. I wanted to know all I could about her. I wanted to understand what it was to be blind. I wanted to understand what it was to be deaf. I read all I could about being blind and deaf, about the various services available or anything else I could put my hands on. I learned some sign language, I watched the miracle worker every chance I could, I talked about teaching deaf or blind students. I talked about training service dogs.

Obviously that’s not the path I took. Like many other kids, I moved onto other things. My fascination with service dogs has never really ended though. Most people know about service (Guide) dogs  for the blind. Most have also heard about service (Hearing) dogs for those who are deaf. The reality though is that there is an incredibly diverse number of organizations who train dogs for a multitude of purposes!

Today’s Atlanta Journal-Constitution has an article about service dogs for autistic children. The dogs are trained to intervene during behaviors, tether the child from being able to dart away during frightening or upsetting experiences, and interrupt repetitive behaviors. The dogs are also trained in search and rescue should a child get lost.

Maybe even more amazing than the fact that the dogs can be trained to perform these amazing and life saving tasks is probably the fact that for so many children the connection with the animal becomes a calming and “social” experience. These children who have such difficulties forming relationships seem to form one with their service dog. The mere presence of the animal for many seems to have an incredible calming effect for the child.

I think a dog like this could be an incredible help to Katherine. If I didn’t have such horrific allergies I’d get one for her too. Maybe as she becomes an adult and we try to give her a more independent living situation, maybe we could do it then. I think it would have some pretty significant benefits for her. Aside from the obvious service benefit, I’ve seen Katherine around animals. It has this amazing effect on her. I have yet to see something that duplicates that effect and this is why I think it would serve her so well to have one. There are dogs that are also trained to perform for multiple purposes which would be of great use to Katherine (and my peace of mind).

There are dogs for seizure assistance, diabetic response, physical assistance and even psychiatric service dogs. The big down side for many in obtaining a service dog is the price. Service dogs range in price from $3000 to well over $20,000. Financial assistance can be available so most organizations strongly suggest that if you have a need for an assistance dog to apply. Frequently local support can be used to fundraise. There are organizations out there who do NOT charge for the service dog. The cost is significant because not only is there a significant training period for the dog but then the human must be trained in how to utilize the dog as well. All this training costs money.

If you think that a service dog might be a resource you should investigate further some of these sites may be of use to you:

• Assistance Dogs International -  Tons of information regarding Guide Dogs (for the blind and visually impaired) Hearing Dogs (for the deaf and hard of hearing) and Service Dogs for people with disabilities
• 4 Paws for Ability -  autistic, seizure, hearing, mobility and multidiscipline dogs
• Canine Companions for Independence -  Service dogs and skilled companions
• Heaven Scent Paws -  Diabetic and seizure alert dogs
• Paws with a Cause -  hearing, service and guide dogs
• Psychiatric Service Dog Society -  information about psychiatric service dogs

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.

From food.com – Sandra Lee

5 Bean Chili
Difficulty: Easy
Prep Time: 10 minutes
Cook Time: 8 hours
Yield: 8 servings

INGREDIENTS:

• 1 1/2 pounds lean ground beef (we’ve also substituted ground turkey)
• 2 cups chopped onion
• 1 (15-ounce) can light red kidney beans, drained
• 1 (15-ounce) can dark red kidney beans, drained
• 1 (15-ounce) can cannellini beans, drained
• 1 (15-ounce) can butter beans, drained
• 1 (15-ounce) can pinto beans, drained
• 2 (14 1/2-ounce) cans diced tomatoes with jalapenos
• 2 (1 1/4 ounce) packets chili seasoning mix
• 1 (8-ounce) can tomato sauce
• 1 cup water
• Salt and pepper

DIRECTIONS:
Suggested servings: cornbread, sour cream, cheese, chips, and fresh cilantro

In a skillet over medium-high heat, brown ground beef with the onions. Be sure to break up clumps as much as possible. Put the mixture in a slow cooker.

Add remaining ingredients and stir together. Cover and cook on high setting for 4 hours or on low for 7 to 8 hours.

Ladle into bowls and serve with your favorite chili fixings.

….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.

Virtual world teaches real world skills
Utilizing an online gaming virtual world, teens and adults with Aspergers’ practice socializing skills. The pros and cons to this approach of learning socialization.

‘Underdiagnosed’ Girls with Autism
Are girls not getting diagnosed and into intervention services? Why is autism more difficult to diagnose in girls than boys? This Nightline story delves into why boys are far more likely to be diagnosed early and girls are being missed.

Women start writing group for moms of special needs kids
Two women in East Central Indiana form writing group as support system for other moms of special needs children.

Breaking new ground on the airwaves
Jerusalem radio station broadcasts monthly show run by developmentally disabled individuals.

Music Therapy helps special needs students
Research in New Zealand helps show music can be used successfully to meat therapeutic goals, social and cognitive development.

Special needs children find peers and fun at center
Western Massachusetts children are being well served at a community center where they are learning valuable skills as well as having fun

Burn victim seeking return to family, special needs kids
Jim Tindell was burned during the wildfires trying to save horses that provide therapy to special needs children. After a long recovery and rehabilitation he looks forward to returning to his family and the special children who benefit from this therapy.

The other day I showed you the chart we have with Katherine (the smiley face one) that charts certain tasks. We have used charts like that on and off for quite some time with Katherine. We learned about them when Katherine was getting ABA (Applied Behavioral Analysis) therapy. Over simplified ABA therapy behavior modification technique which uses positive rewards to target behavioral change.

This oversimplification makes it sound like bribery which it’s not. Think reward system. You get rewarded for performing well at work (paycheck) – this utilizes a similar technique. This type of system works very well for children with autism, PDD, TBI, ADD/ADHD or any diagnosis with challenging behaviors.

Think about it. People generally avoid negative input. Who remembers asking their parents for a spanking or grounding? Who wants to be yelled at or get a disapproving look from their boss, spouse or parent? While negative input will illicit behavioral change the problem is it rarely lasts long. With our kids concepts and lessons are typically that much harder to teach so longer lasting results are critical.

I don’t know about your child but Katherine thrives on attention. This becomes a problem because she really doesn’t differentiate between positive and negative attention….well to be more specific while she’d prefer positive attention but she’ll take what she can get and negative attention will suit her just fine if she isn’t getting the positive kind. This means we really need to have as many ways to give her positive reinforcements set in place as possible because positive gets more positive. Studies state that reinforcement (positive intervention) works far better than punishment (negative intervention).

Let me say that the training for this is not just for Katherine – it took a lot of retraining on the grownup (Mom, Dad, Stepdad, Grandparents) side of things as well. While I thought I always tried to praise her, I was also quick to punish or give negative input with infractions. The basic idea here is to become a proactive parent, one that rewards rather than reacts to undesirable behaviors. Sounds like a piece of cake – not quite as easy as it sounds but quite attainable. Even us “old dogs” can learn new tricks.

Exceptional Parent actually ran an article about positive parenting in the December 2007 issue. Here are the key things they offered about getting the results you want from positive reinforcement.

1. Catch kids being good – it’s easy to notice bad and take the good for granted. To be successful with this type of program you have to acknowledge and reward what the kids do right.
2. Reward the right behavior – the system should be used to get new behaviors or strengthen desired behaviors. Avoid rewarding behaviors that are already consistently appropriate.
3. Use variety and creativity – Keep it fun and interesting for you and your kids. Make sure your system is versatile enough to allow for creativity while maintaining consistent structure.
4. Avoid costly rewards – if the rewards are too expensive or too time consuming, they are difficult to fulfill and this will often result in inconsistency. One way to incorporate larger rewards is to award pieces of a puzzle or letters to form a word etc.
5. Be consistent in your implementation – The most important key to success is consistency. Develop and share the “rules” of the system and stick to it. Adjustments are fine, but avoid giving in to whining and begging.
6. It’s NOT bribery – You are promising something to your child to induce him to do something illegal, wrong or against his wishes. It’s a reward system and you are recognizing your child’s ability to do something right.
7. Have faith in the system – Give it time to work. Take time to evaluate problems and make modifications accordingly. Just like anything it takes time. Our typical kids will pick up on it faster than our special kids….it’s ok. Keep going. It works and it makes for a more pleasant environment for all.

In this article Exceptional Parent also highlighted a device called the Appreciation Station that might just work to help you implement such a program. I’m going to get one to try it with Katherine.

This is a really visual and tactile way of reinforcing the reward. Shaped like a treasure chest, tokens are used to retrieve capsules that are pre-loaded with any number of rewards – stickers, small items, coupons, puzzle pieces etc. It’s visually bright and appealing and I don’t know about you but my kids love any machine they can put something in and get a reward out of. They love all those little machines that dispense candy, gum, temporary tattoos, or drinks. This device comes with a DVD which offers tips and techniques for using it. It’s $49.95 plus $12.95 shipping. I’ve just ordered it so I’ll report back in a follow up my thoughts on the product and on how it does in accomplishing the goals.

Ever woke up and just wanted to stay in bed and have a pity party for lil ole you? Ok well maybe I’m not as spunky as all of you but I do wake up and have days like that. Today was one of those days. I just felt overwhelmed. Ok that’s not quite true – I felt OVERWHELMED. I actually do better under total crisis than lots of little issues that are adding up. Right now we just have a bunch of persistent mid-level issues which are combining together to be the big 1-2 punch. Obviously I got out of bed, but it took some effort. Ok, that and a 2 year old who was letting me know about the poop in his diaper

In all seriousness though, I have some tricks that I’ve developed from years of having this issue intermittently. Maybe some of them will be useful to you.

• My top 10 list – I’m no David Letterman but I come up with a quick 10 things at the top of my head which I count as blessings. Some days I lump family & friends together, other days to get to 10 I name them individually. Something about making it to ten and realizing there are people out there who don’t have so many blessings in their life make it easier for me to cope with what God served up for me today.

• Break it up – when I think of all the things sitting on the plate that need to get done in a single day it’s EASY to get overwhelmed. When I make a to-do list and prioritize it that helps. Now I get two different mental highs – one from completing quality and one from quantity. Quality means knocking off a task that I rated as high importance. If I only get that one thing done though it can still leave me overwhelmed so I try to either break that one task into it’s elements so I’m completing multiple tasks within one bigger job or I look for a couple of tasks on the list that I can multi-task while I’m doing the bigger job (run a load of wash while I write a blog entry, fold a load of laundry while I’m on hold with a bureaucrat fighting for Katherine’s services) and now I’ve gotten several things done which makes me feel like I’ve accomplished more. The other thing breaking it up lets me do is get real. Sometimes I try to put too much on my plate because I think I need to be supermom. Putting it down on paper lets me get real with myself about what actually needs to be done TODAY – and put the other stuff to the side.

• Visualize – I think about how it will feel when I get it all accomplished. I let myself revel in that feeling for several minutes – then I go about recreating it by accomplishing.

• Force a smile. – Yup I lie in bed and FORCE myself to smile. Something about doing that for 5 minutes actually does make a difference. I know I’ve heard something about the science of the frown vs. smile but I just know for me it’s frequently the jumpstart I need.

• Let Go and Let GOD – You may not all have a specific belief system or you may be a born and bred staunch Catholic, Baptist, LDS, Hindu on and on but whatever your belief system believe this. There are things you can not control. Life happens. Accepting that is one of the hardest things to do. I struggle daily. If I remember that someone is there helping me get through no matter how hard it gets I can remember how much harder it could be without Him. I’m not advocating a specific faith but a spirituality and higher being who is with you on this journey. No matter how rough the road gets – throw it back up to Him and he’s ready to catch and hold on while you need Him to. The saying is Let Go and Let God and it goes along with my mother’s favorite which was God doesn’t give you more than you can handle. Occasionally I think she was not entirely right about that which is when I let him know that I appreciate His faith in me but I need a little extra help. Sometimes I say that silently in a prayer – sometimes I scream OK IT’S OVERLOAD HERE at the top of my lungs. It makes everyone around me look and laugh, including myself and then I find things lifted off my shoulders. Be careful you listen for the response. It doesn’t always come the way you think it will. Today it came in the form of my friend Laurie coming for a cup of tea and taking on the dishes in the sink and entertaining Donovan for an hour so I could type this up Yup – she is always on the list of blessings!

Do you have one thing that helps you lift up and pull yourself out of the pity party? Share!

Some of you are pretty new to being involved in the crazy maze of special needs parenting. When I first had my daughter Katherine and needed to understand medical terminology, I had a small hand up because I was an Emergency Medical Technician. This meant that I had some basic understanding of medical terminology, anatomy and first aid procedures. It came in handy. Not everyone is quite that fortunate. However by the time we got into physical therapy, occupational therapy and later on schooling, I was lost for quite some time. I used to joke that someone should have given me a dictionary to decipher all the alphabet soup that was being used to tell me things. Things I wanted to understand and needed to understand.

As I was researching information for an upcoming post, I stumbled upon that very resource. I’m pleased to announce that I have received permission from the source to repost The Dictionary for Parents of Children with Disabilities for your use. Special thanks go out to the South Dakota Department of Education/Special Education Programs who originally developed this resource for their kind permission to share this extensive resource with all my readers and the Sanford School of Medicine Center for Disabilities at the University of South Dakota who is in the process of updating it! The pdf requires that you have adobe reader to look at the file. This program is free at the Adobe website

Hopefully this tool will be valuable to you in navigating the maze and all it’s tricky terminology

The Dictionary for Parents of Children with Disabilities

Dr. Mehmet Oz. You may have seen him on Oprah. You may have read one of his many excellent books. He also does work for Reader’s Digest. I was reading the latter this morning when I saw a little piece that Dr. Oz did on Heart Truths. The one “truth” that caught my eye The Selfish Heart. Dr. Oz says:

The heart doesn’t sacrifice itself. Before it sends blood to the brain, lungs – anywhere – it sends blood to the coronary arteries. It feeds itself first so it’s always there to keep pumping, no matter what. It’s a good lesson for many mothers who sacrifice their own health to benefit their children.

It reminded me of my mother. I remember when she found the lump in her breast and I asked why she hadn’t had a mammography. She told me she knew she should have, but she always seemed to be so busy with something for me or my brother. The cancer had already long since spread and she was gone 8 months later. I know she didn’t tell me that to make me feel guilty, but it did. I swore I’d never have to tell my children that I didn’t take care of my own health because of them.

When I had Katherine that concern kind of got put on the back burner. My life was inundated with things that needed to be done with Katherine, not to mention that financially everything I had was going to her care. It was an error that thankfully neither she nor I have have had to pay for. I now had a sense of why my mother said there were always things that she needed to do for us kids, rather than take some time to take care of herself. I could see how time could get away from you. I had to resolve to change that however. Katherine even more than her typical sibling needs me to be around for as long as reasonable. At the very least I need to stop taking chances with my own health and get back into the habit of being selfish. Just like my heart.

As part of my Reorganization New Year resolution I’m going to prioritize healthcare for me. Healthcare however for moms needs to be more than just the physical health although I’ll be scheduling a physical and a mammography and gynecological exam. Healthcare needs to include the physical, mental and emotional wellness as well.

Taking care of a special needs child is mentally and emotional draining on top of any physical demand it puts on us as mothers. It’s imperative that we put recharging on our vital to-do list not and not in the category of “when I get around to it”. It will go a long way towards making you a better parent, better able to deal with the demand of a job which is by it’s very nature demanding – even before you add the additional strain of parenting a special needs child. So here’s a list of things you can do to take time and relax and rejuvenate – after you make an appointment with the doctor for a physical.

• Read – and not a book about your child’s diagnosis – trashy novel or latest bestseller is best
• Take a long hot bath after the kids are in bed
• Watch a funny movie
• Leave your child with the grandparents and have a night out with your husband (or a night in!)
• Take a walk
• Join a gym and make it a priority to work out
• Call a friend and meet at the park or at Starbucks
• Go get a manicure or pedicure – or BOTH
• Get a massage
• Join a book club at the library
• Find a group that shares a hobby you enjoy and attend their weekly/monthly meets
• Take a yoga class
• Put some headphones on and listen to your favorite music
• Have a cup of green tea – green tea has certain relaxation properties
• Go to a museum
• Go to a concert
• Take an art class
• Take up knitting, needlepoint or scrapbooking

What sounds like a FUN break for you? Find something and then do it. The key is it has to be for YOU and ONLY you – not your kids. I love seeing my child enjoy something as much as the next – but that’s not the key to getting a break from parenting. Everyone needs one. It doesn’t make you less of a parent. As a matter of fact it makes you a better parent for knowing you need to feed yourself first to be best able to care for the rest. Be selfish. I’m going to try my hand at it more often too.

I just wanted to take a moment to thank Michele at Special Needs Parent for interviewing me and featuring this site on her blog yesterday. I wanted to say welcome to any new viewers of The Special Parent as well!

~Kyron Arambula