Posts tagged ‘life’

Dad and Daughter shared Ice Cream

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My heart has been very heavy lately, which is a feeling that I am very unused to. The fact is, as my children age, some into young adulthood, their problems are more real life problems, not just a tantrum in the grocery store. 2 of my younger children, with as many good traits and skills that they do have, do not having the capacity to be fully self-sufficient as adults, including incapacity to maintain a paying job. Yes, SSI is a possibility when they are adults, but even that provides only poverty level income. They are my family and my financial responsibility, which necessitates looking at the ability of our extremely diminishing finances to care for them during their lifetimes.

Although hubby and I both work, often 6 days a week, and are considered solidly middle class, our bank account does not reflect this. Every time Marie has a PTSD episode, (every 6 weeks to 2 months,) the ambulance bill exceeds $1000, money that is not reimbursable. (She requires additional emergency personnel because restraining her safely requires at least six, strong professional emergency adults.) We have funded one college tuition, and are currently funding another at expensive colleges to best meet the special needs of my children, (for which they received no financial assistance because we are, after all, “middle class”…) In order to attempt to give them the best education to be able to succeed despite their disabilities, we subsequently have taken a large second mortgage on our home. And then a third… Hubby and I live “paycheck to paycheck”, as I am sure many parents of children with disabilities live.

But I digress…what I was saddest about is that Steven now has partial custody of a beautiful, vivacious daughter who is one year old. (Note to parents: make sure you talk OFTEN about birth control to your teenagers, especially your teenagers with disabilities…) He, and we, do not have any extra money to support her in the manner to which we are accustomed to supporting our children. With his Asperger’s (and extremely capable skills in caring for animals,) Steven is a doting dad. Not working, he has tons of time to spend with her and can generally be seen sitting on the floor of the living room playing with her interactively, rocking her for a nap, singing her nursery rhymes, or taking her in the large, fenced in back yard to swing and explore and play to her heart’s content. What he does not have is money to pay for her needs, and this breaks my heart. This morning, he asked if I have any “change” and if he can go look in the car if there are any quarters that have fallen behind the seat. At last count, he’d managed to scrape up $2.19.

Driving home today, I was stopped by the light near our house. On the corner is an ice cream stand where our family often used to take a walk for ice cream. The kiddos would giggle over whether they would get the chocolate jimmies or colored ones, (the sprinkles were free!) Today, I noticed the young man sitting on the picnic bench. Across from him was a stroller with a young girl in it. Both had tan skin and wild, curly black hair. Holding a small container of ice cream in his hand, he was using a spoon to feed her, laughing and playing the “airplane” game to put the ice cream in her mouth. She was giggling also, throwing her arms in the air as if to say “wheeeeeee!” after every spoonful. Steven exhibited pure happiness, that special kind of happiness a parent has for their child. They were joyful and the fact that she wore cheap diapers and wore hand me downs that didn’t always fit did not matter at all. Suddenly I felt a little bit better about not have any money, because Steven taught me today that money does not makes life purposeful, but it is love, which is free. Life is good!

She Looks Just Like Me!

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My children who are adopted are of mixed races, which has instigated a lot of joking over the years about how much we are like each other.

Three of my children have brown eyes, just like me! Two have blue eyes, just like their dad! Amazing, just like each other!

All of us love ice cream, especially cookie dough! What are the odds?

Swimming is something we have in common, (mostly because we live on a lake.) Dinora was able to swim by the age of 18 months old. She used to jump off the side in the deep end of the community pool with me. Everyone kept saying it was dangerous being so deep. But she was so tiny that even if she jumped off the lower end she wouldn’t be able to touch the bottom, so what was the difference. All of my children are natural swimmers.

Three of my children are creature lovers, anything from earth worms to boa constrictors to the every day dog, cats and bunnies.

With the exception of me and their dad, everyone loves scary movies. (Don’t know where they got THAT from, I hide under the pillow and shake if I even hear an eerie chord.)

With all of these similarities, of COURSE we are related! And so we have built MY family…

Now they are building theirs. Francis has a one year old daughter who looks JUST LIKE HIM, (minus the vision impairment!) Dinora has a young daughter who looks JUST LIKE HER, (with the exception of reddish hair, taking after her Irish dad.) And now Steven has a baby daughter who looks JUST LIKE HIM! All of the similarities we fostered as a family cannot compare to the fact that their flesh and blood look similar to them. But that is not what they focus on. They continue to bond over similarities…Steven’s daughter really loves animals and strawberries, she MUST be his daughter! And Dinora’s daughter is a little diva, enjoying make-up and nail polish, (so much like her diva mom.) Francis’s daughter loves vanilla pudding! And MUSIC! Go figure!

The truth is, family is not what is built by flesh and blood, but by common interests, tastes, and a whole lot of love. Of COURSE we are all related, we are a family!

The GPS is Set to Home

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I don’t write much about my son, Angel, who has dissociative identity disorder. It seems to be such a sensationalized topic in the media that I don’t want to trot him out to add to the scrutiny. The fact is, he leads a pretty normal life.

After years of counseling, (which continues) he understands his issues with his “peeps” very well. He is appreciative of the mechanism of their development because he has only minimal memories of the severe, prolonged abuse he suffered as an infant and toddler. (Who can DO such things to babies????) He had worked with a psychiatrist who wanted to meld the 12 personalities, but Angel was not in agreement with this treatment. To him, it seemed like abortion because each of his peeps was valuable to him.

11 of his personalities live contently together. He can sometimes be seen staring off into space with a slight smile on his face. When I ask him what’s going on, he says his peeps are having a tea party in his brain and he starts to laugh. He has told me many times that he appreciates having peeps because life is exciting and he is never lonely or bored.

The 12th personality, the “asshole”, used to appear uncontrollably when Angel got angry. Angel learned through therapy to accept this personality because this is the personality who endured most of the abuse. (He does not know this personality well, because to know him would be to remember his abuse.) In order to temper any damage that could be done by the asshole, his peeps have learned to work together to nurture and control him so he is no longer dangerous. Quite a feat for a brainful of peeps!

Angel works as a security guard in the evening, sometimes through the night. He loves this job because it can be done by most of his peeps, so there is no fighting over who gets to come out. He has a nice circle of friends who understand his issues, and he feels comfortable in social situations with them. They know that if he suddenly starts to dance wildly and strut his stuff, his “diva” personality has the floor. (She loves pink boas and nail polish.) Or if he becomes the center of attention, leading the activities like a pro, his “game show host” personality comes out. Or if he just sits in the corner, withdrawn, his baby personality comes out, too frightened of the world to interact. This peep will need to be driven home by one of his many friends.

Driving is the biggest issue because one peep might be driving somewhere and another peep might take over and not know where they are going. He has learned to accommodate for this problem the way he has accommodated for all issues that have come up in his short life. He now keeps his GPS set to home so they can all find their way home!

With all of these personalities, he is just Angel. Accepted by his friends and family in his amazingly normal life.

That Disability Line Looked Awfully Tempting!

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Needing to get a picture ID, Marie and I went into the black hole named the Registry of Motor Vehicles. Despite many years of revamping, that place can still take 4 hours to navigate. It was with this background that I bring up the option of the line for people with disabilities. Actually, there WAS no line. Tempting. MMMMMMMM. Marie has a disability. Teaching her to be more independent, I was actually only accompanying her while showing her that SHE can maneuver through the system. Without parental assistance, she really DID have a disability. But I have raised my children not to see their disabilities but their abilities. She may not talk or hear, but, armed with all of the appropriate paperwork filled out and the certificates of existence she needed, (birth certificate and social security card,) she has the capabilities of writing what she wants to say and reading back what the other person writes to get her ID herself. She can function as fully as a non-deaf teenager in the registry. And that meant she was fully capable of waiting in line like everyone else.
There have been many times in life that a disability line looked tempting, especially handicapped parking. What parent of a child with a disability hasn’t dreamed of getting that front row spot. Granted, many parents of children with disabilities DESERVE that front row spot, but not us. My kiddos can walk fine. No need to park there, even if the only other spot was a half mile away. But it certainly was tempting…
Just like that line at the registry. After about an hour of snaking through the regular line, the disability line looked awfully lonely. Marie could just zip in there and be done with it. But Marie isn’t disabled. She can communicate fine, just differently than others. She does not need a special line.
And such is our life. To let the children think they can use a disability line to get through life would be unfair to them. They have been raised to know they can do everything anyone else can do, they just may have to do things differently. No disabilities here!

And I was WORRIED about My Daughter’s First Date; Silly, Silly Me!

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Marie is a teenager who has had her eye on both boys and girls for a possible boyfriend or girlfriend for several years, with no actual luck finding anyone. We had “the” talk a while ago when she asked me if she should like boys or girls. Knowing her proclivity to try to dress like a boy due to her early childhood abuse, I told her that whether she had a boyfriend or a girlfriend would depend on who she wanted to have sex with when she was an adult. SEX? She looked at me in astonishment! She didn’t ever want to have sex with anyone!!!

Even though she vehemently denied ever wanting to get intimate with anyone, I still had a knot in the pit of my stomach when she went off on her first date with a guy she knew from a previous school. She wore her bright orange Kool-Aid guy t-shirt, which I had suggested she change. (She is quite stout, and actually looked like the Kool-Aid guy in that shirt!) She felt she looked fine, taking no interest in looking good for Carl. When he came to pick her up, they easily chatted in sign language, having not seen each other for about 3 years. She told me they were going out to dinner and I asked if she needed any money. She looked at me incredulous. Of COURSE she didn’t need money, Carl was going to pay! I asked them what time they would be home. They looked at each other quizzically and Marie finally signed “11”. And off they went.

Being the opposite of a night owl, I plopped myself on the couch in the living room with lots of caffeinated Diet Coke to keep me awake. Because I don’t have a lot of free time to watch tv, it was nice to enjoy Netflix and The House of Cards. After only an episode and a half, home came Marie! I asked her if she had a good time on her first date. She was non-committal. She said she enjoyed eating dinner and talking to him, but they didn’t know what to do after that and it became boring, so she came home. That’s my girl, Marie!!!!

How Do the Blind See a Tree?

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Most people can look up and see a tree.  To a child who is blind or visually impaired, their concept of a tree is the bark they can feel. Their concept of a tree is that it is” rough”.  If they have some vision, they can tell that a tree is brown at its trunk, but “a blob of green” above the trunk.  They could grow up and their whole lives not know what a tree “looks” like.  Expanding such basic knowledge of their world is called expanding the core curriculum. It consists of concepts that are not taught in school, but are still important lessons for that child to learn in order to grow up as an educated adult who is blind.

One topic covered by the nine students, ages six through thirteen, at an April vacation program, was the concept of trees and their differences.  During a nature walk, students found that some trees were so small they could fit their hand around the trunk.  Some trees were so large that it took all nine students holding hands to encircle the trunk. Some trunks were very rough, with deep groves, and some were smooth, with little lines barely traceable by their little fingers.

They learned that evergreen trees stay green all year, and they giggled as they carefully touched the sharp needles. They never knew that trees could be so prickly!  Under the tree, they found the pinecones from which a new tree may grow.

They learned that oak trees, in the spring, have no leaves.  They closely examined the branches of an oak with a few dead leaves still attached, carefully feeling them and making the connection with the leaves they see on the ground in the autumn. Acorns which were still attached to the tree branch were felt with much enthusiasm.  They had collected acorns from the ground underneath the tree, but to actually see it attached seemed to be a surprise. They felt the new buds on the ends of the small branches, buds which would soon bloom into leaves.

Students learned about flowering trees, in full bloom during their springtime visit.  Most students were amazed that a tree could have flowers.  In their minds, trees and flowers were two entirely different things.  But there they were; pink blossoms on the end of a cherry blossom tree branch, gentle, sweet smelling little flowers.

As they were feeling and looking at the trees up close, students were in awe.  So many different types of trees!  And they would not describe a single one of them as “rough” because they were finally able to look beyond the bark.

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(I apologize, it has been a busy summer and this is a repost from 2 years ago.) For more stories about children who are blind, 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

A Whole New Meaning to “Swimming with the Fishes”

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I have been fortunate in that my mother loved to travel and she often took me and one of my kiddos “along for the ride.”  One of my favorite spots was Discovery Cove, part of Sea World in Orlando.  Discovery Cove offered a make believe coral reef with lots of beautiful fish swimming around and huge stingrays that would swim close and touch you. It was so amazing, and was as close to real snorkeling that I had ever been. With a life jacket, snorkel and mask on, Marie, (my 13 year old daughter who is profoundly deaf and has PTSD) and I spent the day swimming around, amazed at the many varieties of tropical fish. It was like being in another world.  In one spot, there was a glass wall and you could swim next to sharks.  Up until this point in my life, this was as close to real snorkeling, and SHARKS, that I would get! It was awesome!

Near the end of the day, Marie’s medication began to wear off as we had stayed later than I anticipated.  She began to get anxious, but she didn’t want to leave.   I told her one more swim around the coral reef and then we’d head back to the hotel.  As had been happening all day, a stingray came up and touched Marie on her leg.  In fact, she had been petting them for most of the day, calling them her “friends”.  For some reason, this touch was different than the rest.  She became frightened and had a full blown panic attack.  She started SCREAMING her high pitched scream and she was signing (in American sign language,) “The fish is going to eat me!” (Why the fish would think she were any tastier later in the day than earlier, I don’t understand.) To get away from the stingray, she climbed onto my back.  I tried to calm her down, but it was difficult to do sign language while trying to swim with a child on your back, and she was screaming so loud her eyes were shut and she couldn’t see what I was saying anyway!  By this time, we were halfway around the coral reef and as far from the shore as you could possibly get.  Marie decided she was not safe enough on my back because her toes were still in the water,  so she climbed up on my shoulders to get completely out of the water!  Unfortunately, that meant I’d have to sink UNDER the water for her to stay OUT of it.  I started screaming along with her.  (Albeit alternating choking with water and screaming.) She was truly frightened the fish was going to eat her and I was truly frightened I was going to drowned.

They have several life guards there and our dilemma was not hard to miss, with Marie standing upright and me bobbing in and out of the water choking. Because we were so far out, it took the lifeguards what seemed like an eternity to reach us.  When they got to us, Marie refused to let the lifeguards touch her, screaming and kicking at them.  (Good old Post Traumatic Stress Disorder shows up when you least expect it!)  What three of the lifeguards ended up doing was supporting me in the water while she continued to stand on my shoulders and scream. Of course there was a huge crowd of onlookers on the beach, some taking photos.  (We really were quite a sight!) Once on the beach both Marie and I collapsed into the sand.  The life guards asked if we needed to go to the hospital, but I was still breathing and Marie had stopped screaming and was crying quietly, so that meant we had both survived unscathed.  Well, maybe not totally unscathed, I’ve lost my wanderlust  for snorkeling!

 

If you are interested in reading more, I have written an e-book entitled The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane  available at I-Books, Amazon, and Barnes and Noble.

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