Archive for June, 2013

But She was Just Talking to Her!!

Indoor Water Parks 1

My job includes coordinating both a summer and winter program for children who are blind and visually impaired.  Last winter our lovely little group of about 40 went to an indoor water park during February vacation. If you have never been to an indoor (or outdoor for that matter) water park, you are missing one of life’s most wonderful playgrounds with water slides for all ages and skills. My age may indicate I could manage the “black hole”, but my skill kept me in the kiddie area!  (Ohhhhh!  The KITTIE pool again!!!)   Lounging in the lazy river on a double tube was a great way for staff to keep an eye on their child without letting them float gleefully away amongst the throng of people enjoying the current. A huge water playground centered the park, with slides and little pools and tons of water play, including the huge bucket of water atop the structure.  Every so often, the bucket, filled with water, would tip over and the torrential water would come gushing down, soaking everyone as though…..well….as though a bucket of water was dropped on their heads. Because my daughter, Marie, was also on school vacation and she joined us, I chose this particular water park because it featured a surfing pool.  Marie LOVES to “surf”, and on every other occasion we have come to this facility she has spent the entire day doing so, waiting, nose pressed against the glass, at the door first thing in the morning to come in, and being the last one for the security guard to throw out at closing time.going to this water park.

My big surprise was that Marie wanted to help out a group of younger girls who are blind.  The girls had staff who amicably allowed Marie to join their group. 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 such a strong love for “surfing”, my expectation was she would help for a little while, but spend most of her time surfing. Surprise of surprises!!!!  My wonderful daughter did not choose her own activity, but spent all of her time with the little girls, helping them on the slides, doing the “sighted guide technique” to maneuver around the crowded park, showing them where the food was on their plates, (using the clock method,) and so forth.  Marie was having a grand time, and the girls all seemed to adore her.

On the last night of this program. Marie was seated in the booth at the restaurant with two of the girls and their staff.  One of the girls all of a sudden started waving her hands wildly in the air, not just once, but she kept going! Prone to seizures, the medic ran over and asked her if she was okay.  Of COURSE she was okay, she said, 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!!!!

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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/

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If the Washing Machine Eats the Socks, What Eats the Silver Ware?

We all know the adage that the washing machine eats socks, which is why they never come out in pairs.  I long ago gave up trying to match them, just buying plain black socks for the boys and hoping they kind of match.  Marie gets to feel in fashion because all of her socks are multi-colored with frogs, kisses, stripes and cats.  If she can get one stripe from one sock to match the color on the cat, then she has found a fashionable match!

My concern is our silverware.  When we first had kids, we started out with a full Faber ware set.  As we saw pieces disappear one by one, we had to replace the set several times.  (We now have 72 knives and six spoons left.)  We do not know where the silverware goes.  As far as we are concerned, we eat with it, put it  in the sink, in the dishwasher to be washed and then back in the silverware drawer.  It is not rocket science.  It IS, however, way too complicated of a system to work in our house.  For some reason, our silverware disappears!  One would assume that the washing machine/sock theory would work for the dishwasher and disappearing silverware, but, alas, that is not the answer.

Theory #1 is that ours is the “HOUSE OF THE DISAPPEARING SILVERWARE”, oooooooooh!  We sometimes stay awake at night imagining the silverware whisking away into thin air with a whoooosh here and a whooosh there, kind of like witchcraft.  (In the interest of full disclosure, my husband is not bothered by this and he sleeps soundly…)  In the morning, half of the forks are gone!

Theory #2 is that, somehow, the children are involved.  Maybe they take a paper plate of left overs to their bedrooms and the silverware gets thrown away with the disposable dish. I shudder to think of this dirty, tragic end to our fine and selfless silverware. They died in the line of duty, never again seeing the light of day…

Whatever the reason, and whatever the consequences we have put upon our children for not taking care of the silverware, it continues to vanish for no apparent reason. Long ago we gave up our concept that the ideal home has good silverware with which to feed our perfect little family. Currently, spoons and forks from the Dollar Store fill our silverware drawer.  The frustration of having to constantly replace good silverware is gone.  With that stress no longer on my shoulders, the result is a cheaper, flimsier fork.  Eating steak, which would potentially bend our new utensils, it out of the question. It doesn’t matter anyway…hamburger is about all we can afford.  We are so lucky that our budget matches our utensil selection!  Our hospitality skills are also hampered by the antics of our kiddos, so we are also lucky that no one in their right mind would come to our house for dinner, thus sampling our pittance silverware.  Isn’t it great how life does have a way of turning out perfectly?  We are so lucky!

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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/

Cracker Jacks and Oranges: My Kids Have the Best Dad!!!

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I suppose I am prejudiced, because I picked him, but Raymond is a wonderful dad!  I am sure when we dated and eventually married sooooooo many years ago, he didn’t have a clue about the roller coaster ride we were in for.  Sweet little marriage with 2.5 kids, growing old together, holding hands and walking on the beach….forget that!  As the parent or foster parent to 19 children, we have spent our marriage trying to have a positive, loving impact on the the children who have passed through or are in our lives.  I am the flakier, impulsive, eternally optimist slob.  He is the more grounded parent, making sure we have enough money to pay the bills, the house is somewhat clean, and the meals are on the table.  He is like a big kid himself with the children…enjoying playing with them and gently bopping them on their beans when he tells them he loves them. He despises the lime light, and has asked me never to write about him in my blog…hopefully he will forgive me for this post.

During a recent visit to the grocery store, he demonstrated everything I love about him:

The store we shopped at was one in which the discounts are great, but the ambiance is lacking, as are the shopping bags.  This was his domain, as he does the shopping weekly. This is his life…no frills, just get down to business.

Filling the cart with basics, (pasta, spaghetti sauce, bread, cheese, eggs and milk,) he purchased enough to provide for our home as well as for our 2 young adult children who are struggling financially. Because I do not generally go grocery shopping with him, I did not know he did that. His sense of support for his children extends into adulthood. Even though they are out of the house, he is still their “go to” person for flat tires and a listening ear. When he listens, he takes things more serious than I do…for me, there is always a silver lining.  I will try to cheer my child up,  make her/him happy.  However, sometimes children just want to bitch that sometimes life just SUCKS!  He listens, commiserates, and gives them that affirmation.

Because he was shopping with a budgeted amount,  I was playfully reprimanded more than once for putting something in the cart that was not absolutely necessary.  However, he DID justify the expense to put in one special thing for each of our children; Cracker Jacks for Steven, fresh oranges for Dinora,  pasta salad mix for Angel and Lay’s Salt and Vinegar chips for me to bring on the weekend visit with Marie. Most importantly, while getting in line at the cash register, he reached over into a bucket of flower bouquets and spent time picking out the best one for me.  (Yes, he DOES buy me flower every week.)  Practical, loving and romantic.  Isn’t he great?

After filling our cart at the grocery store, despite a long line at the cash register, Raymond was patient.  So patient, in fact, that he let a woman with only a few items pass in front of him.  Smiling, he said “Go ahead of me, please. I’m in no hurry”.  He chatted with the cashier, expressing genuine interest, and he assisted an elderly woman in carrying her groceries to the car. He cares about others, strangers, anyone in need. Is it any wonder he has been a great father to our children?

Any set of parents will experience difficulties of varying degrees.  Raising children with disabilities magnifies those difficulties.  It is a huge financial strain, and any thought of retiring and spending our days walking on the beach holding hands is for naught.  Potential retirement savings have been spent on the care of our children, funding therapists who do not take our insurance, taking time out of work when they are hospitalized, transportation to hospitals and therapists out of state, and other expenses many parents would never dream of having. Quality time between Raymond and myself can’t be spontaneous, but needs to be scheduled. (Rest assured that romance is alive and well with us!) Family and friends are often not our best cheerleaders. (Is that a polite way to put it?)  The challenges have been huge, but Raymond’s support has never been greater.  He has rolled with the punches, as though having a screaming child rescued by paramedics from the side of ferris wheel during a PTSD episode, having a child with twelve personalities (and trying to get along with all twelve), spending the whole day at Disney World in a quiet cove of trees while our son who is autistic collects bugs and worms, never knowing whether to buy girl clothes or boy clothes for your daughter are normal parts of parenthood. It’s is just normal family life to him. And I thank GOD for that…because I could never do this alone…

 

 

 

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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/

Miracle of Miracles: Turtle Tanks and Pony Tails

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My life raising kiddos has been full of excitement, as well as challenges. Steven has been my most difficult child to raise. The 7th child born to a woman who was mentally ill and addicted to crack cocaine and heroin, we took Steven home from the neonatal unit as soon as he was able to be released.  He was unbelievably “messed up”.  (Don’t you just love my knowledge of medical terms?)  He cried constantly, his whole body twitching.  Once I learned to swaddle him tightly in a baby blanket, keep the room dark, and talk in a whisper, he could tolerate my presence.  To touch him lightly would make him scream in pain, but cuddling him strongly, the deep pressure somehow calmed him.

Whether due to the drug exposure, or just because his birth mom was mentally ill, Steven exhibited extreme symptoms of ADHD, autism, bi-polar disorder, sensory integration deficit, obsessive compulsive disorder,severe anxiety disorder and learning disabilities.   (The whole concept of “diagnosis” is fraught with contradictions in my mind, as the “diagnosis” with which he was labeled were arbitrary, useless except for the benefit of getting special education services. We were fortunate to find a psychiatrist with vast knowledge of children born addicted to drugs, and he became our mentor.  Like myself, he does not not believe in labels, but in treating the symptoms.)

Steven has led an interesting life.  With his Asperger’s-like super knowledge of reptiles, and an uncanny natural love for children, he has shined in these areas.  He would be fascinated with the foster babies in our house, and his most favorite activity was sitting in the rocking chair by my side and rocking a little one.  He is, however,  unable to understand the concept of money, wear shirts with tags in them,  eat textured foods or adapt to an unexpected change in his schedule.  A strict, structured environment and predictable schedule has been the key to helping him manage every day life.

As any parent, I have thought a lot about his future and how he could possibly survive as an adult…

Then, a miracle happened…he found the perfect girlfriend to love him! Wonder of wonders!  Joy of joys!  I never thought is was possible, but the adage “there is someone for everyone” is true in his case!

Wonderfully patient Alexandra loves to keep everything controlled.  Where other young men would go running in the other direction at the sight of a young woman in strict control, for Steven, it was just what he needed!  She manages their time, his money, and their life together with strict precision.  JUST WHAT HE NEEDED!   They also have similar interests in reptiles, with Steven using his vast knowledge to ensure the safe upbringing of their many “pets”; three turtles in a tank, (recently caught in the lake behind our house, during one of their day long fishing adventures,) a small snake, a Chameleon and two lizards.  They are affectionate with each other, with Steven smiling brightly as she gives him deep bear hugs. The icing on the cake, as far as both of them are concerned, is her young daughter.  Again, where other young men would go running for cover, Steven goes running towards her sweet three year old daughter! He adores her!  This very large, 6 foot talk, husky, bi-racial, often scary looking young man who has an aversion to shaving, is like a loving angel with her daughter! He gently holds her hand to guide her when they are walking.  He plays Shutes and Ladders and Go Fish with her. He helps her pick out her clothes, (shirts without tags, of course!) Most amazingly, he has become her hair stylist, putting her hair up in braids and pony tails.  She loves showing off her new hair styles, proudly telling everyone that STEVEN did it, as they both stand there and beam happily!  She needed a dad to love, and Steven needed a family of his own. He adores Alexandra and she has a huge calming affect on him. And he has such a natural caring for children, and for Emily in particular, that it melts my heart every time I see the three of them together.  He LOVES them…an emotion I once thought he would never feel…as a boyfriend, (husband?), and father. Yes, he has found comfort in his own family…and has a content, structured, “normal” life.  Isn’t that amazing?????  Miracle of miracles!!

Is there no greater joy as a parent than seeing your child happy as an adult? Especially when you thought that may never happen…

 

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To read about Steven’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/

Also, for just the cost of transportation, I am available to do presentations for your groups.   I can be funny on serious subjects…

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/

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