Posts tagged ‘sad’

How NOT to Raise a Child with a Disability

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When your child is a toddler, focus on all the things he can’t do. He’s not walking as soon as other children. He’s not talking as good as other children. It is embarrassing to take him out in public because everyone comments on his looks. Blame your spouse for his disability. Or, equally worse, blame God. Whey has He forsaken you? Why has He saddled you with this tremendous burden? Spend your child’s infant and toddler years lamenting the sadness, disappointment and loss.

As your child gets older and goes to school, always blame the teacher or the principal if he can’t do something. After all, it MUST be their fault. They are discriminating against your child if they try to make him behave or actually complete his school project. He has a disability! Doesn’t that come with the right not to have to do homework or obey the class rules?

Try to force the sports teams to let your son play, and they will. But your son cannot play soccer/baseball/basketball as well as the other children and he is humiliated by his poor skills and the disappointment from the other children when their team loses. Make sure to yell at your child for his poor performance. After all, if he didn’t have a disability, he would have made a great soccer/baseball/basketball player, and it is a horrible loss for you to admit that your son is a failure.

Argue with your partner/spouse over your son. You don’t both agree on the best style of parenting, so each do your own thing and teach your child that he is a constant source of distress between the two of you. Possibly get divorced. And blame your son. If he hadn’t been born, you would have had nothing to argue about.

You see your son as worthless…he can’t play sports, he gets in trouble all of the time in school, (as you have been his best advocate that he doesn’t have to follow the rules because he has a disability,) and he has minimal social skills. Do not be surprised when he turns to drugs.

He assumed that he was SUCH a disappointment that you would be better off without him. Do not be surprised when he takes his own life…

This rant follows a recent suicide of one of the students who is visually impaired with whom I worked. Like all adults who were a part of his life, I wonder where I was to blame. I tried in vain to impart my enthusiasm for a bright future for him. I tried in vain to make the parents realize that by setting their child apart they were denying their child an equal part in society. I tried in vain to tell the parents that their child may not be good at basketball, but he could swim spectacularly! Maybe he couldn’t play soccer, but give him a bowling ball, a bowling ramp and a lane of pins and he could get a strike two times out of four. He had such a way with younger children that I imagined him a teacher one day. But his parents did not see it. They only saw their own disappointment. Their own embarrassment at having a child who looked different. Their own anger at each other for the having “caused” this disability. They only saw their own feelings and never once stopped to think about how this was affecting their child. Their child who would never become the teacher I envisioned.

My suggestion to parents of children with disabilities is this: your child is a wonderful creation who, for whatever reason, was born with a disability. Rejoice in your child! Look for the things he CAN do, and incorporate them into your daily life. Plan for his education in a realistic, non-judgmental manner. Sure the teachers may screw up once in a while, but haven’t you also, at one time or another, misjudged your child? Try to keep the peace at school. You only meet with the teacher once in a while, your child has to go to school every day. If you and your spouse disagree over parenting, see a counselor who can help you work together. Most of all, find something in which your child excels and enjoys, and fly with it! Everyone wants to have success in life, and your child is no different. Whose to say one type of success if more important than another?

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For more suggestions on how to raise a child with a disability, please, read my book. Here is a link:

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

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

Under the “Dome of Silence”

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I am really dating myself, but my favorite tv show to watch when I was a child was “Get Smart”, a spy spoof where Maxwell Smart comedically played an agent who always “got his man”, even when he didn’t know how he did it! I relate so well to Maxwell Smart and his “methods”, because my life is been pretty much the same!
But their infamous concept, the “Dome of Silence” flittered through my mind recently in an unpleasant way, a way that made me change my thoughts in a major way.
My daughter, Marie, who is deaf, has been hospitalized again. For parents of children with severe psychiatric disorders, y’all know that hospitalizations are a recurrent theme, no matter how well a child seems to be doing. Life with such a child is full of peaks and valleys, and sometimes the valleys need a tune up. As conscientious parents, we probably all play the same game…do we visit every day? Do we bring food and drinks? Games? Puzzles? In other words, do we turn each hospitalization into a reward for being there?
My brother’s schizophrenia emerged when he was just emerging himself into young adulthood at the age of 18. This was a surprise disability on top of his already existing developmental, vision and hearing disabilities. As my parents aged, he eventually lived in a wonderful group home, but HE also needed “tune ups” in a psychiatric hospital, generally after an incident where the aliens told him to walk ten miles to the train station, or throw himself against the wall as punishment for some unknown offense. These hospitalizations were regular, and each and every time my mom would visit every day, bringing with her his favorite desserts, or a milk shake or ice cream sundae. Her heart ached to see him in the hospital so often, so she would sit there for hours with him, holding his hand or rubbing his back. It made her feel better to visit with him, and it made him feel better also. In fact, it made him feel so much better that the frequency of his “tune ups” increased. I learned as a young adult that being in a psychiatric hospital should not be rewarded with food and puzzles, or even with visitation every day.
I have tempered my need to mother my daughter with the need not to make inpatient hospitalizations seem better than the residential school in which she lives. Following my own instincts, which were reinforced by Marie’s social worker and psychiatrist, I have limited my visits. Yesterday, however, I changed my mind.
The hospitals have all been wonderful at providing ASL interpreters for at least 12 hours a day, which facilitates her conversations with nurses, social workers, unit workers and her psychiatrist. Marie does not, however, want to utilize the interpreter in conversations with other children. She tries to fit in with them, but does not understand what they are saying or laughing at. Being somewhat paranoid, (aren’t all teenagers?) she suspects they are laughing at her. She tries to join in, and they may include her for a few minutes, but soon the conversation continues over her head, and the children are once again laughing and joking and not including her. As I was leaving yesterday I witnessed this happening, saw the look of sadness in Marie’s eyes and noticed that she was holding back tears so as not to further embarrass herself in front of the other children. She looked so alone, and in reality she was. The other children were under a “Dome of Silence”. She could see them talking, gesturing and laughing, but could not hear or understand what they were saying. I don’t know why this obscure reference came to mind, but it did, and the visualization of it has changed my way of thinking. I realized that her isolation from others trumps the need not to reward her for being in the hospital. Nothing in the hospital could be a reward for her, as she is not part of the community as she is in her school. If anything, one would think she would be so adverse to being in the hospital that she would do anything in her power not to be hospitalized. Ah, the irony of that nostalgic “Dome of Silence.” I think I will visit for a few hours today and bring her a milkshake. We will sit there and “talk” in ASL and I will hold her hand like my mother did with my brother. She will no longer be sad and isolated, at least not during my visit…

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To read more about our life, 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…

I Miss My Mom…

This entry will not be about my kids.  It is entirely about me wallowing in sorrow over the loss of my mother.  No, she is not dead, but she has become ill with dementia and today was the first day she did not recognize me.  My “mommy” is gone.  I suddenly have great empathy for those who have lost their parents.  Because I did not have a great relationship with my dad, I was sad to see him pass away, but I did not feel the sadness I feel now.  My mom used to come over and help me with my kids.  She made me custard pudding, (my favorite.)

She has taken me and the children on many vacations and we had great fun!  Costa Rica, Guatemala, Belize, London, and the Grand Canyon.  She loved to travel and we were more than happy to keep her company.  She liked to go to places where she could really experience a unique adventure.  We stayed at a resort in Costa Rica where we were the only non-Costa Rican people there.  NO ONE spoke English.  We spent the week laughing hysterically at this “problem”.  We ate Costa Rican food, (boiled turkey, roasted rabbit, and lots of great fruit.) She and Dinora took a white water rafting trip, level 4.  My mother had always wanted to go white water rafting.  She did not, however, know that she was going to get wet. There she was in her long pants, socks, sneakers, and sweatshirt, standing next to Dinora in her cute little bikini.  Of course the raft flipped over a few times, and it was a good thing my mom had her life vest on because the weight of her clothing would have pulled her under and she would have drowned for sure! During our trip to Guatemala we stayed at out-of-the way places.  At one place, they did not have electricity and no built in heat or hot water.  We were given a “manservant” to keep our fire running and to heat hot water for a bath.  And on our long trek up the mountain to get to Mayan Ruins, we were all exhausted.  The guide said to watch out for jaguars which lived in the area.  My mom, who was exhausted from the climb (at age 80) said “I almost with a jaguar would get me so that I could lay down.” In Belize, we went to a zoo that had chicken wire fencing around the animals and we almost lost pieces of Steven a few times when he reached his arm into the flimsy cages to pet the lion or the alligators.  She came with us on the trip to London to settle Francis in at Cambridge University.  We spent several days sightseeing.  We ate pigeon.We ate pigeon and we had tea every day. My mother cherished the tea set.  I bought it for her from the inn where we stayed.  I told her it cost $25 (because she was always against spending money on “things”.)  I actually paid $250 for it…One fear of mine came true…I have always had this fear of being poked in the eye with an umbrella, so I would never use an umbrella.  During a double decker bus tour of London, we stopped at Buckingham Palace.  As it was raining, my mother had an umbrella and I didn’t.  Francis took a picture of us, and just as we said “Cheese”, my mom poked me in the eye with the umbrella.  And I have a picture of it! My worst nightmare came true and I lived to tell about it.

My mom has the most beautiful insides of anyone I know.  She was always upbeat, optimistic, encouraging and pleasant to everyone she met. She never ever had an unkind word to say about anyone.  She always took the “high road”, and she has devoted her life to making life better for my brother, Curtis, who is developmentally delayed, legally blind, and totally deaf.  She always felt guilty because he went to live in a group home.  You could not convince her that he had a full and happy life living with 3 other guys.  A great deal of her dementia has including her insisting she was going to take Curtis home to live with her.

She was my role model, my cheerleader, my friend, and she always took care of me.  And now I have to take care myself.  I know I am selfish, but I don’t like it very much!  I feel so sad to see such a vibrant, bouncy, vivacious woman slowly slip away.  I try to visit almost every day, even if she is “out of it” and I just sit there and rub her back or hold her hand.  When I leave, I always hug her, kiss her, tell her I love her and that she’s the best mother in the world. She has always told me she loves me back.  Not today.  For the first time, she didn’t know who I was. I feel lonely.  Scared.  I miss my mommy…

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