Posts Tagged ‘parents of special needs children’
Balancing my life vs. my child’s: Until my dying breath…
This is going to be a tough post. I might chicken out and not even publish it. I don’t want it to be a pity party: “You parents go through so much. You are Saints.” God Forbid!
I am hoping this message will give other families a chance to take a breath and allow themselves a little slack. For those of you who are professionals, I hope it gives some insight into the choices families make–usually at a cost.
Families make hard choices all the time
All parents of young children, and adults who are caring for their elderly parents experience these same dilemmas. The sandwich generation is a well known problem in our culture and effects most families.
What is different for parents whose children are adults with disabilities? This intense care is usually not discussed or understood. It is not a time-limited situation where your child grows up or your parent dies.
Aaron is 39 years old and as I get older this is a growing issue. We are talking about–well, until my dying breath.
First Sign of Growing Old
I’ve been having lumbar back pain and had to begin a series of injections and other stuff. This is the first major medical issue I’ve ever had, so I have no right to complain. Plus my philosophy is that anytime a Doctor can actually “fix” a situation, I consider it a temporary problem and a medical victory.
BUT the bottom line was that for the first time ever I had to cancel Aaron’s doctor appointment.
I consciously chose my needs over my child’s.
I’ve had pain before, sure. But that has never stopped me, so why was this time different?
What was I thinking?
* There was the 50 mile round-trip drive to Aaron’s Doctor, the only one I trust who takes a medical card…
* Aaron goes every three months and didn’t have any major issues…
* We bring Aaron home with us every Saturday night. Whenever we take Aaron to the Doctor, we keep him both Saturday and Sunday nights and try to schedule on Monday morning…
* Monday mornings are the busiest day for the Doctor so there is always a long wait in a room full of sick people… Aaron is not a good “waiter”…
* I feel bad about the last minute cancellation to Aaron’s doctor, we try to be respectful of his time. If we have to pay the $30. charge, so be it.
* I always bring flowers to the receptionist in the Doctor’s office. She takes a special interest in Aaron and always gives him hugs and makes him smile. (I know, I know, amazing that I would spend energy on flowers for the receptionist–but she is one of the few people who get excited to see Aaron so that makes me happy too)…
* Going to the doctor takes a full morning…
* After the doctor visit we take Aaron out to lunch and then drop him off at his day program….
* Monday is the “community outing” day at the day program–so when they actually do what they say they are going to do (we won’t go there)…that means the group may or may not be in the building when we want to drop Aaron off…
* If the day program group is not there then we have to leave Aaron with the director who just puts Aaron with a book in a separate room and ignores him, a safety worry…
* The day program has Aaron’s noon medication, so the good thing is he will get his noon meds on time…
* The bad thing is I will have to be face-to-face with the director, who is a good person just has no resources. This means I will ask, “How is Aaron doing?” and the director will tell me they strongly think Aaron should be in diapers and have his meds increased… which will lead to… (let’s just say) be stressful for both of us and reinforce my reputation as “EVIL Parent and Day Program Public Enemy Number 1″….
I wrote this all out in stream of consciousness because this site is about climbing every mountain and mountains always have streams– did you like that analogy? But, like most people, I think our conscious run streams of pros and cons with every decision we make.
Second and Third Thoughts:
I accept it, but I am not proud I made the decision to think of myself first. When we took Aaron back to his house on Sunday night and I was hardly able to walk on Monday morning I knew I did the right thing. There is no way I would have been physically able to give Aaron his bath, breakfast, and go through all the steps outlined above.
So Aaron will live, I’ll get better. But how soon will it be that either myself or my husband will have some serious condition where we require medical care and can’t take care of Aaron?
I look at Aaron’s housemate’s parents. They are in their 90s. They have done an admirable job, but age has now made them just as vulnerable as their son. Soon it will be my turn.
Damn! Why is this so hard? Why do I feel Aaron’s quality of life is ONLY in the hands of his family?
We are fortunate to have some good professional people in Aaron’s life. But why do the thousands of dollars being given to the agencies–who are supposed to be providing Aaron care–don’t care?
There is a huge difference between providing “care” and “caring”.
Okay, getting old is tough for everyone, share what you are thinking. Do you think it is more intense for a family with a child with a disability? Is it harder as the child grows into an adult?
Keep Climbing: Onward and Upward
All my best,
http://climbingeverymountain.com/inclusion-for-moms-sisters-of-the-heart/ BTW: Lori Foster 2013 register now.
Don’t these chocolate covered strawberries look delicious?
For Valentine’s Day, or any day, what about making chocolate covered treats or gifts for the people you love?
Chocolate Covered Fun for ALL AGES and Abilities
Parents, Special Education Teachers, Directors of Day Programs and Senior Centers: Everyone is looking for activities that are fun, age-appropriate, and allow people with all ability levels to participate.
Taking your favorite snack for a chocolate dip may be the answer.
The costs will vary according to the ingredients, but pretzels and marshmallows are cheap. Of course, if you want to go gourmet, hey, yum.
“Partial Participation is Better than Exclusion from an Activity” (Lou Brown)
Even if the recipe says, “Easy” that doesn’t mean every person can do every part of the activity.
For instance, Aaron, my son with the label of autism, wouldn’t be able to set the timer on the microwave–but he can certainly dip the pretzel in the chocolate sauce and choose the kind of sprinkles for the decoration.
Aaron can’t read the recipe with words, but he could follow the directions with pictures and though he can’t drive to the grocery, he can partially participate by picking out the pretzels and chocolate.
When Aaron was in school and had a speech therapist, one of his goals was identifying pictures of grocery items and finding the item in the grocery aisle. When he had a physical therapist, one of his IEP goals was pushing the grocery cart without hitting anyone in the grocery store. (Not a pretend grocery store in the classroom.) When he had an occupational therapist, one of his goals was to hand the grocery clerk the money to purchase the items and put the money back in his pocket. Aaron successfully learned these skills and practiced them every week in his functional community based program and … every time our family went into the community grocery store.
There are lots of things Aaron can do to partically participate in every activity.
When Aaron is part of the group, when he does purposeful, functional activities, he develops self-esteem, he is a doer. He is not just a passive observer. If he is treated as a baby, or as someone who cannot do anything but watch, then he loses his skills and his self-esteem. The people who think they are being nice and helpful to him, are not–they are actually causing him to lose skills/self-esteem.
This is a functional activity because if Aaron doesn’t go to the grocery to get the supplies someone else will have to do it.
If Aaron is actively involved in the shopping, the decorating, and gives the chocolate covered pretzels as a gift HE MADE–then this activity becomes much more than an easy activity to fill the day. It can become a learning and social enhancing experience. When he gives Grandma a package of pretzels he made, it is a joyful celebration for everyone. You should see his smile
Be Creative: Lots of Ideas
Dip White or Dark Chocolate Ideas:
Dried Fruit (apricots, raisons…)
Fresh Fruit (strawberries, cherries with stems, apples (whole or slices)…)
Pretzel Rods or any size
Rice Krispie Treats
How to Make Chocolate Covered Pretzels:
Things You Might Need:
Microwave-safe glass or measuring cups
Bags white and dark chips (12 oz.)
Bag of pretzel rods (12 oz.) or other food
Small candies or sprinkles
You Tube Video Demonstration
Task Analysis or Recipe
Chocolate-Covered Pretzels with Sprinkles
Recipe courtesy Paula Deen for Food Network Magazine
Prep Time: 20 min, Inactive Prep Time: 24 hr 0 min
Cook Time: 2 min; Level: Easy
Serves: 24 pretzels
• 1 12-ounce package milk chocolate chips
• 1 12-ounce package white chocolate chips
• 24 large pretzel rods
• Assorted holiday sprinkles
Place the milk chocolate chips in a microwave-safe bowl and the white chocolate chips in another. Microwave one bowl on high for 1 minute. Remove and stir with a rubber spatula. (The chips should melt while you are stirring, but if they don’t, you can continue to microwave for 15 more seconds, and then stir again.) Wash and dry the spatula. Microwave the other bowl on high for 1 minute, and stir until the chocolate is melted.
Dip one pretzel rod into the milk chocolate; use a spoon or butter knife to spread the chocolate about halfway up the rod. Twist the rod to let the excess chocolate drip off. Hold the rod over a piece of wax paper and shake sprinkles on all sides. Place the pretzel on another piece of wax paper to dry. Coat another pretzel with white chocolate and sprinkles. Repeat until you’ve coated all the pretzels, half with milk chocolate, half with white chocolate, and let dry completely, about 24 hours. (Cover any remaining chocolate with plastic wrap and store in the refrigerator.)
Copyright 2011 Television Food Network G.P. http://www.foodnetwork.com/recipes/paula-deen/chocolate-covered-pretzels-with-sprinkles-recipe2/index.html
All Rights Reserved
Gifts and Favors, Holiday Variations
President’s Day, Halloween, Easter, 4th of July, Christmas Variations
Does it make sense that an activity as simple as making a chocolate covered pretzel can be a learning and self-esteem project? Can teachers, parents and directors of day programs make this more? Can they blow the opportunity?
Have you any ideas on this or other projects?
Keep Climbing: Onward and Upward
All my best,
Other Related Articles:
BACK to SCHOOL Article 2
To celebrate the new school year here are some of my favorite posts.
Why Do We Go to School?
A New Year of Learning
This is one of my favorite stories–an updated article from when Aaron was 8 years old and Tommy 6. Enjoy!
It was the weekend before school began and Cincinnati was sweltering from a week of 90 plus temperatures with over 50% humidity.
And partially because most of our neighbors don’t have air conditioning, and partially because we enjoy each other’s company, all the moms were sitting on the porch steps waiting for the street lights to signal the time for baths, bedtime and the end of summer.
Several of the children were busy with final rehearsal for the “Ralph Avenue” version of Snow White and the Seven Dwarfs. Erin was the wicked queen, Allison the prince charming and the younger children Eric, Patrick, Tricia, and my son Tommy were assorted other characters.
The kids ran in and out of the yards wearing their winter caps with the tassels dropping over, trying to look like dwarfs.
After a while, the large cardboard box from Allison’s new stove changed from being used for the stage scenery for dwarfs to a cool hideout for cowboys.
Patrick’s mother was telling us a newspaper reporter stopped by her house to do an interview with “a new kindergartner.” It would be a three part series on Patrick’s impressions before school began, during in January, and a third article after in June.
The poor reporter had a time of it because every time she asked Patrick (5 yrs.) about the imminent kindergarten experience, Eric (6 years and a kindergarten veteran) would give his answer, including a heated discussion about, “Who would be picked for the cookie passer?”
It was so much fun to be watching the kids and hanging out with other mothers but the beginning of school is very traumatic for me because of our continuing problems with the special education school program for my son.
Aaron has the label of autism and severe intellectual disabilities. A new year signals the beginning of another year of battle for inclusion.
But maybe because it was too hot and maybe because I was surrounded by friends, I continued to sip my ice tea and enjoy the normal conversation of my neighbors.
Patrick said his favorite football team was the Jets. His brother Michael, age 3, noting the adults’ interest, announced his favorite team was “the helicopters.” Jets—helicopters, why not?
Tricia’s soccer team won every game last year with a very gentle and knowledgeable coach. This year they won their first game but the new coach yelled and screamed and was upsetting the team and their parents. The parents wondered if victory was worth the price?
Moments that make parenting fun
Tommy went for his school physical and when the nurse asked him to urinate into a cup he burst into tears.
I pointed to the counter and its rows of labeled cups and told him everyone—even grownups–had to do this.
Sobbing he said, “Okay—but I won’t drink it.”
Later he asked, “Mom, why do they need a toilet in there is everyone pees in a cup?”
My friends and I exchanged sale prices on jeans and problem solved about the best backpacks and gym shoes with shoelaces that didn’t need to be tied.
We laughed, reminisced about summer and shared the thunderstorm warnings.
Eric’s Mom passed out popsicles.
All this time Aaron was walking up and down following the crowd of “dwarfs” as they flitted from yard to yard. He didn’t get a lot of direct attention, yet he was part of the group. For a time they all put on football helmets and Aaron went over, knocked on them to hear the funny sounds and everyone giggled. Aaron got quite excited and even though he is tactily very defensive he allowed them to place the helmet on his head, for a minute anyway.
Tommy brought out his golf clubs and soon Eric and everyone tried a few swings hitting a large flowered ball. Once Aaron was too close and thoughtfully Patrick took his arm and helped him get out of the way and Eric adapted and shortened his swing.
Then the crowd was back down the street again. This time Aaron waited for the abandoned golf club. He bent over and balanced perfectly picking the club out of the grass. He began in his own way to hit the big plastic ball around the yard. Then he too lost interest and headed back down the street to find the other children.
Four years ago, the same day we moved into our home, a group of people on the other side of town filed a lawsuit to protect their neighborhood from the “danger’ of a proposed group home for people who were labeled mentally retarded. I remember my worry of meeting our new neighbors and their reactions. What would be their concerns, fears? Would they allow us into their community?
There have been awkward moments when Aaron would do something inappropriately. But then “normal” “regular” young children have their good and bad moments like the rest of mankind.
Now Aaron was just Aaron and each neighbor had worries about jobs, children, families—the usual. We were a part of their neighborhood, their community.
As the sky darkened and the parents began to gather up the toys, football helmets, golf clubs and the talk again turned toward getting the children to bed so they would be fresh for the first day of school, I couldn’t help but think of how children and adults learn.
We use our creativity for Snow White costumes and playing with discarded boxes. We use our problem solving skills to find sale priced jeans to stretch our budgets. We use skill development including repetitive drill and practice for playing soccer and for picking up golf clubs out of the grass. We build on our experiences and associations whether they are jets and helicopters, cups and drinking, or how we feel about people who are different than we are. We also learn from people, some of whom are rough coaches, some parents, some newspaper writers, and some—neighbors.
School may begin tomorrow but in our neighborhood a whole lot of learning happened tonight. And perhaps, just perhaps—because Eric and Pat and Tommy will grow up with their incidental learning, experiences, associations and relationships with Aaron, the years of battles for belonging, full inclusion and citizenship will be shortened and our war for acceptance will be won.
Sometimes the make-believe lessons of Snow White overlap with the real world lessons of our family. After all, wasn’t Snow White the one who sang: “No matter how your heart is grieving, if you keep on believing, the dream that you wish for will come true.”
Keep believing, keep dreaming and a Happy School Year to All.
Has our dream of inclusion for all kids come true? Certainly more children now have the opportunity. Aaron, Neil Roncker, Jenni Wetzel, Julie McMahon–they were the first kids in the doors of the public schools in Greater Cincinnati. I believe with all my heart they touched the lives of their peers who are now grown and sending their own children off to school.
And some of these young parents became the doctors, teachers, bus drivers and parents of kids with special needs. Our lives really are all part of each other, all part of the circle of life. I hope this new generation feels better prepared. I hope the schools their children attend are also better prepared. I hope our communities are more welcoming to those who have differences.
What dreams are we still wishing for? What lessons are we still learning?
Please leave a comment so we can celebrate this new year of learning.
What are you thinking about as the school year begins?
Keep climbing–onward and upward.
All the best,
“Partner in Policymaking graduates are members of the Giraffe Society–they are willing to stick their necks out.” Ed Roberts
Partners in Policymaking Celebrates 25 Years: 1987-2012
It is popular to complain, “We need to get rid of government programs–they don’t work.” But if you are a parent or person with a disability, you know you can’t do it alone. You know you need help to survive.
And, maybe the question we need to ask is: “How can I get involved and make government programs work better…for myself and others?”
If you are struggling to find services and build a network of support for yourself or your young child, I highly recommend Partners in Policymaking. It is the best resource I know.
Partners in Policymaking is a program that not only works–it teaches parents, self-advocates and policymakers HOW to make government programs work.
In 1987, Dr. Colleen Wieck of the Minnesota Governor’s Developmental Disabilities Planning Council created Partners in Policymaking.
For 25 years the goal is still to create a win-win partnership between people who need and use services and the people who make public policy.
With 21,000 Partners in Policymaking graduates in the United States, and 2,000 Partners graduates internationally, parents, self-advocates and policymakers are changing the world.
Partners is designed for adults with disabilities and families of young children, but some programs expand that target group.
The goal of Partners is to teach “best practices” and the skills necessary to “change systems.”
State-of-the-art information gives Partners the big picture, allows them to dream big, and gives them strategies to turn their dreams into reality.
Partners participants become competent to change their own lives, and then to work for changes that will affect others with disabilities at local, state, and national levels. Partners graduates are expected to be agents of long term change. They learn there are no “quick fixes.” They are trained to achieve long term successes.
Who are the “Policymakers”?
Policymakers are the people in government who are elected or appointed to make decisions about rules, regulations and resources. They legislate on school boards, city councils, county and state agencies and governments, federal congressional legislators, and others who shape disability issues at all levels of government.
Some Partners graduates have become elected and appointed public officials.
Partners in Policymaking is the Instruction Book
How many times have you heard parents wish, “If only I had an instruction book”?
Partners in Policymaking IS the instruction Book.
Here is a video that explains the facts about the Partner’s Program from the United Kingdom.
Texas, 20 Years of Partners in Policymaking (2006) “It is the Power of the Dream that brings us here.” (You will love this song.)
New Classes Forming Now: The Power of the Dream
Find the Partners contact person for your state/country.
Find out the target audience for the Partners Course and if you are eligible–sign up.
If you are not eligible, see if you can still be part of the Partners network.
Everyone can take the online courses.
Here is the Homepage for the Partners in Policymaking Website. You can find contact information for where you live, you can find online courses, you can find Parallels in Time: A History of People with Disabilities and a wealth of other resources. But most importantly, you will be able to network with others who are sharing your journey.
Any success stories about Partners? Any success stories about partnerships between advocacy groups and local leaders? Does this sound like a good idea? Who would you suggest for speakers on state-of-the-art? Do you think the power of the dream can bring people together?
Keep Climbing: Onward and Upward
All my best,