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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.

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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!

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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!!!!

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My kiddos, Marie and Angel, both have flashbacks to their early childhood abuse. From out of no where, a scent might set Angel off, or a man somewhat resembling a perpetrator might set Marie off, and they are both deep in the world of bad thoughts. I know it can happen, but never gave it much thought until today. When I had a flashback that set me off on a nostalgic ride of good thoughts.

I was pursuing the bargains at JC Penney’s, picking out a cute grey sweater to ward off the cold while waiting for the spring that I know is supposed to arrive any day now. Soon. When the mountains of snow melt… But for now I wear sweaters.

While waiting in line, I admired the clothes on the counter ready to be purchased. They were a blouse and sweater in pastel colors, the colors that are supposed to look best on me according to my “color chart”. (Of course I never find the appropriate color clothes because I only buy clothes deeply discounted; the browns, the blacks and the greys.) On the cashier’s counter lay two different colors of beige pants, a light pastel peach colored sweater with pearl buttons on the neck and three quarter length sleeves, and a light pink, sophisticated shirt, wrinkle-less with a stiff collar. The clothes screamed success and professionalism.

Looking at the woman buying them, I noticed she was about my age, with hair dyed a honey blonde and a middle aged waist holding up a pair of jeans. What struck me most was her relationship with the woman she was with. The two of them were giggling conspiratorially, pointing at the clothes with a look of accomplishment. Almost giddy. The other woman was much older, in her 80’s, with similarly colored hair and body frame. They kissed lightly, among their smiles, and as they walked away with the bagged items, the first woman hugged the other and said, “Thanks!” It struck me that it was a daughter and her mother, and the mother was buying her daughter some clothes for her work. As old as the first woman was, her mom still wanted to care for her and to buy her the perfect clothes, probably for a special occasion, like her birthday. Today.

This scene ignited such an emotional flash back for me that I almost cried out. That could have been me and my mother if she was still alive. For my birthday, she would always take me shopping to buy two wonderful outfits that I would not have been able to afford otherwise. They would be in my perfect colors, and we wouldn’t care if they were on sale or not. Even as she aged and entered a nursing home, I’d still bring her out in her wheelchair to shop. I was her child and she was my mother, caring for me and making me happy. She was especially conscientious to remember my birthday, when her mothering was still acceptable.

My heart is still happy/sad after seeing the women in JC Penney’s, and I sit here typing this with tears in my eyes, trying not to let them fall. Today is especially meaningful for me. Today is my birthday. And I did not get any new clothes….

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