Posts tagged ‘disabled’

What’s In My Purse?

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As the mother of children, especially children with disabilities, I have been a frequent visitor to emergency rooms. It didn’t take me long to realize that those hours spent W A I T I N G were tedious for my kiddo and myself. In fact, for my kiddos with ADHD, they could be dangerous. With Steven, he would open all of the drawers and fling the contents onto the ground, swing from the air hoses and climb on top of the curtain. He was generally uncontrollable in an environment that he saw as a playground and I saw full of dangers that would land him in an emergency room for a reason other than for that which we had come! I had a knot in my stomach and tears of frustration. The emergency room staff and I finally learned that the only examining room suitable for Steven was one for psychiatric patients…no drawers, no air hoses, no curtains to climb. That solved the problem somewhat…but the long wait was also a major issue. Visits to the emergency room often ran six, seven hours, and sometimes all night! What to do? What to do? What to do?

Alas, out of need emerged my “emergency room purse”:
*Extra copies of medical cards and social security cards; when under duress with a screaming child coming in with the ambulance, rummaging through my wallet for these items always seems problematic and adds to my stress.

* A written medical history for each child; remembering those pesky spelled medication names and listing hospitalizations and diagnosis are always nerve wracking, having them at your fingertips is priceless.

*Quarters and crisp dollar bills for the vending machines.

*Animal and peanut butter crackers along with some juice boxes so I don’t have to spend so MUCH at the vending machines. (Dispensation of food and drink dependent upon reason for visit to emergency room)

*Cell phone charger (hours waiting…games to play…people to call…need I say more?)

*A deck of playing cards, INVALUABLE for killing time, and also for great mother/child bonding.

*Manipulative toys
for kiddos with ADHD…nothing like having that coil to twirl or that Rubik’s Cube to solve.

*Extra diaper/underwear and pants unless the child prefers to go home in a hospital johnny. (My daughter, Marie, actually loves the hospital clothing and has a whole drawer full…starting from small sizes when she was young up to the adult sizes she wears now.)

*Chap stick; the rest of me may look like Frankenstein’s monster, but my lips will be smooth and pretty.

*A large print, best selling book for me to read; when a kiddo is sleeping, (YAY!) the lighting may be dim and my eyes may be teary, but large print has always served me well.

My life has been spent trying to remain sane while raising children who can be difficult. Emergency room visits are always stressful and my mitigating solution is the “going to the hospital” purse.

Not to be confused with my “going to the movies” purse…

“It Smells Like Flowers and Sunshine”

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Working this summer running an educational/recreational program for kiddos with disabilities, I have been giving my good ole, 12 passenger van with a wheelchair lift a run for its money.  Surprisingly, despite numerous past mechanical difficulties, it has become a war horse for transporting us throughout the state to many wonderful adventures!  Because it is an industrial type van, it supplies the children with a lot of extra bounces, creaking, twists and turns.  (It is good thing they are all snapped down into booster seats and seat belts or by now I would have many little dents in the ceiling from their bouncing heads.)  They laugh and screech and go “weeeeeeeeee” as though they are on a ride at an amusement park. (I dare say, some of the children have never experienced such excitement…)

Over the weeks, I have become somewhat lax in van cleanliness…food wrappers, discarded art projects, broken recreational items (such as water guns and deflated balls,) and, EWWWWWW, old clothing left by the children, litter the floor.  I KNOW it is not proper, but, somehow, I am so busy with the program arrangements, supervising the children and driving them back and forth from their homes that at the end of my 12 hour day, that I am too pooped to do anything but sit in my lounge chair at home and watch Judge Judy.  I did the only thing I could do under the circumstances…purchased a couple of cute, little, purple, sweet smelling air fresheners for the van.

The day after this ingenious addition, the children filed on one by one for a trip to the aquarium.  Many of them commented on the smell, including one little girl who is blind who remarked “Do you have flowers in the van?  It smells beautiful, like flowers and sunshine!”  Thus proving to me that those Febreeze commercials where people are put into smelly, messy enclosures really DO smell only the Febreeze!

I Didn’t Know Cats Like to Swim…

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Because my youngest daughter, who is deaf, goes to school out of state, I sometimes rent a hotel room for myself, my oldest daughter and her son, Alley (Alejandro) to visit together.  Last weekend was one such weekend.  I love to see the interaction of the three of them, Dinora signing in ASL to Marie and Alley trying to copy the signs with his small hands.  (He explains that Marie can’t talk because her ears are broken, so she has to use her hands…)  His favorite sign, “swimming”,  is used often because he wants them to spend all of their time together in the hotel pool.  It was during one of their swims, while I was sitting in the lounge chair by the pool, sipping a nice tall plastic cup of Diet Coke, and smiling while the three of them frolicked, that I was overwhelmed with a feeling of joy in my heart. They were beaming with laughter and exuding a happiness that one could not overlook…a deep, profound happiness which doesn’t often come to Marie. Seeing her eyes glint with laughter, tears stung at the back of my eyes, then slowly slipped down my cheeks.  To think that a child who had been so severely abused as she could come through all of that darkness and  despair to ultimately be able to experience such joy made my heart want to explode with love for the three of them.  I could not remember ever having been so content in my life, but my reverie was soon disturbed, but not unpleasantly…

My tears of joy were soon replaced by tears of laughter.  Alley came out of the pool and looked around…  “Where’s the cat pool?” he asked.  “The CAT pool?  There is no cat pool!” I replied.  “Yes! Yes!  In hotels there are sometimes CAT pools!” he argued, frustrated that I could not understand what he was asking. “You know, the pool for the kitties.”     Ah!  The KIDDY POOL!

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To read about Marie’s early childhood, here is a link to my book:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

Link to the Readers Digest review of my book:  http://www.rd.com/recommends/what-to-read-after-a-hurricane/

I Lost All of My Money at the Casino :(

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I admit it… I LOVE to gamble; to play the slot machines at the casino.  It is one of my wicked vices. (I’ll bet you are all shocked to hear such an admission, which I have been consciously keeping from you so as not to tarnish my good image.)

It goes back to the days when I was a young adult.  My mother and my brother loved it when I took them to a casino in a nearby state.  We would take a day trip sponsored by a local bus company, and for a mere $25 fee, we would get a coupon for a free buffet and a coupon for $25 in gambling money.  As my mother was extremely frugal, this deal was enticing to her, and it allowed the three of us to have a nice day together.  My brother, who was severely developmentally delayed, legally blind, deaf, and schizophrenic, loved the long ride on the bus, to eat at the buffet where he could choose all of his favorite foods, and to enjoy all of the bright lights. But his favorite thing to do was to play a martian slot machine.  In his schizophrenic haze, he thought of himself as an alien, so he felt somewhat vindicated to see a slot machine “of his people.”  His $25 in free gambling money would last for hours as he would always bid the  minimum, 5 cents.  Every time the symbols on the machine matched, aliens would swoop down to bring them into their spaceship.  With his eyes pressed close to the machine to see, my brother joyfully whooped and hollered every time that happened.The money he won was secondary. He was in his “element”, something which he rarely felt elsewhere. Plus,my brother loved Diet Coke,and he could get all of the Diet Coke he wanted free. (We had purchased a refillable plastic cup one time, and my mother held onto it like gold…washing it and bringing it to every visit to the casino….for years my brother was thrilled to get free soda!)

My mom would always cash in her $25 gambling voucher.  She did not believe in gambling and preferred to take the money in cash, which to her meant a great day out with a free trip and buffet.  Her joy over a great bargain was greater than her playful spirit. She was certain that the machines were fixed, and that they “let you win” in the beginning, and then, when your money was gone, you would put in more and more, never winning again. Although I thought this idea was ludicrous, I have to admit that, over the years, I have seen this happen time and time again…those crafty slot machines!!!!  Regardless, I LOVED to play the slots. I would have to sneak away from my mom because when my $25 voucher ran out, (as it ALWAYS did,) I would play my own money.

And so it was yesterday, when I took a similar bus trip with the recreation group of adults with disabilities that I coordinate.  (After all, just because they have a disability doesn’t mean they should be excluded from loosing their money at the casino like the rest of us!)  It was during that trip that I lost all of my money.  As the last few cents dwindled away in the slot machine, I felt a sick feeling in my stomach.  I was so sure I was going to win!  It was FATE for me to win, because I really needed the money and therefore God could work his “magic” and allow my machine to his the jackpot, therefore getting me out of debt.  Isn’t that the way God works?  Unfortunately not…

As my money ran out, I sat there sad, disappointed, and frantic. What would you all THINK of me? How was I going to buy lunch for the rest of the week?  How could I have been so STUPID?!?!?! All my money was gone…

It is a good thing I only brought $20 with which to gamble…

Lets Agree to Disagree…Mental Illness and Violence

I recently received a response from a blog colleague who’s beliefs are different than mine.  It is normal for people to have different views on things, and everyone’s views are welcome. This is my version of  agreeing to disagree…

Dear 5KWD, I wonder if you would have any insight on the following. After doing a smattering of research I learned that virtually every mass shooter on record was taking antidepressant psychiatric drugs when they “went off”. The news media and many posting here are examining the mental illness angle, but we know that depression, asbergers, etc, does not cause homicidal behavior. However, it seems very plausible to me that these FDA approved psychiatric drugs, which have known side effects, may be inducing this behavior. I think it’s the drugs, not the mental illness. This makes way more sense to me than the idea that sometimes formerly quiet, law-abiding people are randomly “going off” and shooting rooms full of children.  artandlifenotes.wordpress.com

 

I agree that every mass murderer may have been on antidepressants.  It would go along with my theory that they have underlying psychiatric conditions.  All of my adopted children are on psych meds.  My oldest daughter has attention deficit disorder.  Prior to medication, she couldn’t pay attention, she was flunking school, she couldn’t pay attention to read a book, and she developed sever anxiety over her inability to function “normally”.  Once on medication, (which includes an antidepressant,) she brought her grades up to straight A’s, attended college, and has a career in her chosen field.  I understand that some people would say that the side affects of medication would outweigh the benefits, she calls me from time to time to bring her medication to work because she forgot it, and she cannot concentrate to do her job. My middle son, who was born addicted to cocaine, has been diagnosed with a variety of mental illnesses, but I personally like to give him just one:  his brain and wiring is screwed up due to his prenatal exposure to drugs.  As an infant he would flail about and injure himself, he rarely slept, wouldn’t eat, and climbed out of his crib by 9 months old. (He couldn’t walk, but he could climb!) He would run around destroying anything in his path.  Without psych meds, it would have been impossible for him to attend school because he surely would have climbed out the bus window!  My youngest son, who was severely abused in his early childhood, has Dissociative Identity Disorder, (previously called Multiple Personality) a condition in which a child withdraws within himself/herself when abused, sort of “blacks out”, so to speak, but another part of the brain still feels the affects of abuse.  That other part remains in his “psyche”.  Hidden.  Buried. Showing itself from time to time in an angry, violent outburst, often requiring hospitalization. Without psych meds, he would not be able to function as well as he does.  He would be encompassed by deep depression and obsessive thoughts.  My youngest daughter has severe attention deficit disorder, and cannot sit still or pay attention without medication. Similar to my youngest son, she was abused as a child. Her hidden demons come back in Post Traumatic Stress Disorder, tearful, angry aggression, often on herself, but sometimes against others.  Without psych meds, she would not be able to function.  She still has PTSD and “episodes”, but they are far less frequent than when she was not on medication and it would be a daily thing.

I understand people have different opinions about psych meds, but in my family, without them, it would have been impossible for my children to live life “normally”. I know that there may be side affects, but the side affects are far less intrusive on their lives than their mental health issues. The doctor always goes over the possible side affects, and not a single child has ever indicated they bother them.

Regarding your concept of not believing the idea that sometimes formerly quiet, law-abiding people are randomly “going off” and shooting rooms full of children, again, I can only point to my own children.  Childhood abuse, even verbal abuse, and non-loving parents, can permanently harm a child’s developing psyche.  Permanently.  Even counseling and medication may not be able to fully quiet the demons hidden in a child’s brain.  My son, who is the sweetest, nicest, most generous boy, often displays his “angry part”, a part so vile and violent that it reminds me of Linda Blair in the Exorcist.  He is unrecognizable and so angry that violence surrounds him…sometimes resulting in a call to 911 for assistance with restraining and hospitalization.  For my daughter with PTSD, her episodes are more invasive.  The slight touch, smell, or thought can cause her to fall back into anger of abuse, and she dissociates and becomes violent.  She is not herself…well, that’s not true because even when she is having flashbacks she is herself, but the self as a young child being abused.  Regarding the randomness of violence, case in point:  she was recently arrested for “assaulting a police officer with a deadly weapon” when he charged towards her to get her to stop flailing about and screaming.  (She ripped a board off the wall and tried to ward him off.) She is living in a restrictive, “locked” facility with staff trained in behavior modification and restraints, but her behavior has horrified and shocked them.  It is not her fault, she cannot control it, but she is very violent.  Other people looking at her would never think such a sweet, friendly child could harbor such demons.

I know many people not exposed to individuals who are mentally ill to the serious degree of my children would find it hard to believe they just “snapped”.  No one never knows if a person who appears to be “normal and quiet” is really “normal and quiet” underneath.  I believe wholeheartedly that one has to have a mental illness, even if undiagnosed, to be a mass murderer. I believe no one in his/her “right” mind could possibly do such a thing!  Of course, this is just my one biased opinion.  I can understand, though, that there are different sides to every story.  Let’s just “agree to disagree”!

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane by Linda Petersen.

I am Not Very Good with Water Crafts

I work with several recreational groups for children. I am great arranging games, doing social skills activities, helping them   cook simple meals, go out to the movies, bowling and other such activities.  The one area where I am terrible is in doing crafts.

For an October program, we had a great day; went to a corn maze, picked pumpkins, made pizzas for lunch and then…decorated pumpkins. What could go wrong with that, you ask?  Well, I was in charge of it, which was the first mistake. The second mistake was in lieu of having the children of various ages and disabilities use a knife to cut into it, I chose to have them decorate the outside. Not with just stickers…no, THAT would have been too easy! We were using large google eyes, yarn for hair and fake “gems’ for the smile. Very tactile.  Lots of bling.  Lots of glue.  Lots of the WRONG glue…the yarn hair drooped into the eyes, which drooped down towards the mouth, which also drooped down into a frown.  They were very sad looking, in more ways than one.  I excitedly told them to tell their parents they created a melting pumpkin face.  They were thrilled they were so clever.  I was mortified the glue did not hold the items in their designated places.

I had another glue mishap a while ago.  I used jars of baby food and the kiddos glued an icon into the jar top; Mickey Mouse, Spiderman, Disney princesses, and the Littlest Mermaid.  While it dried, they added water colored a light blue, and then half of a jar of sparkles. We were making snow globes, of course.  However, when they tightly screwed the top to the bottom, the icons  simply drifted off into the water.  I had used the wrong glue AGAIN, not water proof.  The little icons were freely floating in the sparkly water.  They could understand why they Littlest Mermaid was swimming, and Spidey could have been flowing through the water to save someone, but poor Minnie and Mickey were just plain drowning!  

My last craft humiliation also contained water.  A few weeks ago I had the kiddos make Thanksgiving centerpieces using real flowers in a beautiful bowl.  I’m no slouch when it comes to common sense, so I knew enough to purchase those green hard spongy things in which the kids could stick the flower stems. First,they glued colored (fake) leaves on the outside of the bowls. Then they started sticking the flowers in one by one.  We followed a basic pattern, a tall, bushy yellow one on top, assorted yellow and orange ones arranged downward, and plenty of greens to finish it off. They put it in the bowl and we filled it with water. They all looked WONDERFUL. I was so proud of my students and their creations,which they showed to their parents when they picked them up. We all know that moms and dads are famous for “ooooowwwwing” and “aaaawwwwing” over each and every creation their child makes, but I knew for sure these were the real thing.  

After the students left, I went back to look at the flower arrangement I had done as a sample.  The flowers were listing to the side.  Curious because they were stuck safely into that green hard spongy thing which should have held them straight…IF IT HAD BEEN GLUED PROPERLY TO THE BOTTOM OF THE BOWL!  GLUE!!!!! Why hadn’t I known that it would FLOAT if not glued down?  Horror visions of the kiddos flowers floating on their side, sitting on their Thanksgiving tables filled my head.  Oh, NO! I am staying away from glue and water crafts from now on!    

 

 

 

 

 

 

 

 

 

 

For any new readers, I am attaching the review of my book by Readers Digest:

Nov 02, 2012 11:04 AM EDT

What to Read After a Hurricane

by Dawn Raffel

Shortly before Hurricane Sandy came to my town, flooding my house and knocking out the power (which is still out), I had the good fortune to download The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane by Linda Petersen.

Her story begins not with her children but with her own childhood spent traveling the country in the backseat of her parents’ car (her perpetually restless dad had post-traumatic stress disorder from  WWII), often with very little money and few provisions. Where someone else might have seen deprivation and isolation, Petersen viewed her unusual childhood with a sense of wonder and gratitude. After marrying young and giving birth to a son who was legally blind (and who went on to earn a PhD on full scholarship), Petersen and her husband adopted four more special needs children and fostered many others.

Her honesty, wit, and terrific storytelling make this a book you want to read rather than one you feel you should read. So there I was, swiping pages on an iPad in the dark in a blackout… I couldn’t have picked a better book for putting it all in perspective.

http://www.rd.com/recommends/what-to-read-after-a-hurricane/

The Deaf Leading the Blind: “But I was just TALKING to her!”

My job is a social worker for children who are blind includes coordinating both a summer and winter program for the children with whom we work.  Last winter we went to an indoor water park during February vacation with about twenty-five children who are blind and “legally blind”.  The children had a wonderful time playing in the water park, on the slides, in the wave runner surfing area, and in the pool, as well as participate in the regular activities that we plan, such as playing bingo and dancing.  Getting together is a huge big deal for these children who are mainstreamed into regular classrooms in their neighborhood public schools where they might not ever see another student with a vision impairment.  I began this program twenty two years ago when my oldest son, who is legally blind, was six years old.

The winter program was a huge success!  Most notably for me, it was the first time my fourteen year old daughter who is profoundly deaf wanted to help out a group of younger girls who are blind.  Each girl had their own staff person who amicably allowed Marie to join their group to help with the little girls. Despite the fact that she normally communicates in American Sign Language, she somehow managed to be very sociable and get along well with everyone. Having normally been obsessed with surfing at the wave runner attraction, and being a somewhat selfish young lady, I had expected she would help for a little while, but spend most of her time surfing. However, I was pleasantly amazed that she did not choose her own activity, but spent all of her time in the water park playing with the little girls, helping them on the slides, holding their hands to guide them around the park, showing them where the food was on their plates, and so forth.  She was having a grand time, and the girls all seemed to adore her.

On the last night of this program. Marie was seated at a booth with two of the girls and their staff.  One of the girls all of a sudden started waving her hands wildly in the air. Prone to seizures, her staff person asked her if she was okay.  She said of COURSE she was okay, she was just TALKING to Marie!!  The laughter started at their table and  soon circled around the room as everyone realized what she had said…she was signing to her, of course!!!!

 

If you would like to read more about my adventures in child rearing, please read the book ‘The Apple Tree: Raising 5 Kids with Disabilities and Remaining Sane”, available on Amazon, Barnes and Noble and I-Books.

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