February 10, 2016
I almost titled this “The Other Side Of The Dolly Rainbow”, but most people wouldn’t get it. As is with all my other blog posts since I began this site, the views I am writing about are mine. I’m SURE there will be people who might not agree with me, and that’s fine, but this comes from my heart and my experiences as a mother of a daughter who has Down syndrome. When Jenni was born nearly 33 years ago, and diagnosed as having Down syndrome, it was a shock to the system to say the least. The whole delivery was something out of a freak show. (She was born in the doctor’s office, doctor lied to us all along about him being a LICENSED doctor, he bilked our insurance, long story short…he’s serving 53 years to life in prison). I loved her immediately (as did my husband) and I knew no matter what, she would be loved, taken care of, provided for, protected, and we would do whatever in the hell we could to make her life a good one. Within a few weeks of her birth she had genetic testing at UCLA and once the diagnosis was confirmed (and tears were shed), she began an infant stimulation program. In this class I met another mom whose baby was Jenni’s age… 3 months old. We were talking about how there should be dolls for our girls to play with, just like them. With our senses of humor intact she suggested a doll called “Hannah Handicapped” and I said “or Dolly Downs.” That was the birth of the nickname DOLLY that has been with Jenni’s since that day back in 1983. In fact, I refer to most people who have Down syndrome as a “Dolly” and my family all know what the word means when they hear this term of endearment coming from me.
Down syndrome is usually caused by an error in cell division called “nondisjunction.” Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called trisomy 21. This is what Jenni has.
This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, intellectual disability ranging from mild to profound, and a single deep crease across the center of the palm – although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees… or not at all.
When Jenni was born, we had NO CLUE as to how our lives would be. Or what life would hold for her. She began a program at 12 weeks of age and went straight through until she was 21 years old. The first three yeas of her life were busy. She attended a program in another city and I had two other small children as well to cart back and forth. (The older girls still have nightmares over those years.) I became aware early on that some of the other babies and toddlers who had Down syndrome seemed to be functioning much higher than Jenni, but kept hoping that once she hit three years old and was in school all day, she’d learn more. Speech therapy wasn’t doing it for her, even in this early stage.
Jenni was a very quiet baby and never caused a problem. She was under a cardiologist’s care as a baby (still is) but she never required surgeries for any severe heart defect… Thank God. She was lovable, smiled a lot, and her milestones were hit pretty close to her typical peers. She loved to be held and kissed and would squeeze my fingers with her little hands. She rolled over, sat up alone, army crawled, teethed: all within a month or so of when my other two girls had reached those same milestones. But she never spoke. As the years went on, we could see how the gap was widening. Her abilities didn’t match her chronological age. Every IEP at school felt like a filet knife was ripping my gut open. Her goals and objectives were basically the same every single year. Not much changed. In the early days after her birth, I would read whatever material I could get my hands on… and this was as depressing as learning your newborn baby has Down syndrome. Outdated, old books were as scary as going through those professional Haunted House productions that are put on in October. I would be in hysterics when I would read one of these books from our outdated library (books published in the early 1950s. One gem was titled “You and Your Mongol Baby”.) When I finally received info from the March of Dimes, I prayed that she would fall into the mildly retarded range (yes, that word was the label in 1983… the new terminology is ‘intellectually disabled”). But back then, and even now in educational/medical testing scales, the categories of an Intellectual Disability are the still the same: Mild, moderate, severe and profound. It’s based on IQ. She never was considered “mild” in any age of her life. In fact the majority of her peers growing up were not mild either. She was labeled as ‘moderate’ for quite a while then the change went to moderate/severe. That hurts. Anyone who say’s it wouldn’t hurt is either a Saint… or just lying.
Her elementary years came and went with no language skills. She had speech therapy in school and also private therapy, and still nothing. She could use one word here or there but not consistent. No stringing of words together. We were told early on that she had receptive language skills but absolutely NO expressive language skills. She has always understood very simplistic instructions: “Get your pj’s out please”, but if you told her to get out her pjs, grab your slippers, and throw a towel on the side of the bathtub, she more likely won’t do either. (Even a two-step instruction goes out the window.) She learned signs for everyday words and used those signs for a few years, then it just tapered off and STOPPED. We encouraged her to use verbal words but it wasn’t there. Finally when she was around 10 years old, the speech therapist she had been seeing privately (through our health insurance) came out and said “Look, I need to be honest. Save your co-pays because she isn’t going to speak. She understands what is being said… to a point… but she can’t get the words from her brain to her lips.” She wasn’t the first person to tell us this but as a parent you want to do everything you can. It’s not that we ‘gave up’ on the speech/language, but we’re not morons either. She isn’t able to do it.
Her 33rd birthday is next month and most days, it’s as if time has stopped still. Her abilities are where they were back in 1985-1986. Which brings me to the MAIN JIST of this long overdue post: There is a new series on A&E called “Born This Way”, featuring 7 young adults who have Down syndrome and what goes on in their daily lives is nothing short of what it is: a reality show with the cream of the crop cast mates. I may ruffle some feathers – and so be it– with my thoughts on this matter. This blog post is pertaining to my family and our life with a daughter who has DS. Let me first say about the show: I am happy for each individual to have been blessed with the good fortune of being in the ‘higher-functioning’ realm of the Down syndrome world. I truly mean it. (And contrary to what some people think- mainly newer parents– high functioning/low functioning are still terms used to determine their intellect. ) The cast’s parents should thank their lucky stars that their children have the abilities to do in their lives what many of our kids will never achieve. ( I am sure they are aware of it.)
But from what I viewed, this series is a TOTALLY DIFFERENT LIFE than the life our family lives with. As I was telling Dennis, it’s as if this cast is from The Other Side Of The Rainbow, where the pot of gold has handed each of them an extra ‘super duper’ chromosome. And then there is us (and others no doubt) at the opposite end of that bright and shining rainbow. In one clip, there is a narrative of one of the mother’s speaking for an upcoming episode where she say’s “If a woman who has a pre-diagnosis of Down syndrome can watch this and say … OMG… there’s people who date; my son can get married; my child will one day get a job; will have meaningful relationships, will have an amazing life”, take most of it with a grain of salt. I know there are some people who possibly COULD have all of these things (maybe Steven on the show); but if I was a new mom seeing and hearing this, I would believe that this is how it is. She would not even consider that the other “reality” exists – my reality- and ours does happen more times than not. It would be so disappointing when milestones aren’t met or when your young adult does not become a public speaker/filmmaker or a rapper (like the cast from the show.) New parents SHOULD be made aware that their child more likely will not be like these people in the show. Yes, you can have high hopes, you SHOULD. We did. Yes, you can think along the lines that “The more I put into my child, the more I’ll get out” (which we did), and then life just happens to go in a different direction. You can be as positive as you possibly can be, but with an intellectual disability, you just never know the severity of how bad it is. Only time will tell. It’s a difficult journey and most people in society have NO IDEA what is entailed with a child who is considered to be moderately/severely intellectually disabled. This show is not the norm. I felt, while watching this series, as if everything was seen through rose colored glasses. And on another planet from the lives we live with each day.
There are many of us on the outside. Way outside. We’ve never experienced most of the everyday living skills/goals with Jenni, other than her meeting a group of amazing young adults that do pretty well for themselves. She has a bulletin board hanging on the wall in her bedroom that I made of all her friends, and that is what we call it: her ‘Friends” board. I was injured last year, had surgery and a long, hard recovery and I haven’t made it back to bring her to see the group. I am in awe of them for their abilities. They are such a great group of people. When I would take her to the social meetings, it made me realize once again how Jenni never excelled in social situations OR in your basic everyday living skills. She functions around that of a 3 year old. (Our perpetual toddler.) She also has a dual diagnosis: autism spectrum, which we learned of several years ago. (Which makes sense: non verbal, rituals… sorting things, lining things up, does NOT like change of ANY kind or new situations). Wish we’d known this 20, 25 years ago. She is completely dependent upon us… for everything. Every aspect of her daily life. Just imagine all you do for yourself in one day. Double that each day. This is what she needs done FOR her, by us. She picks her own clothes out (if we are not going out of the house, that is) and that’s about it. She can’t brush her teeth, bathe, wash her hair, dry her hair, shave, use the toilet independently (she can use the toilet… she needs to be taken to it as she will not go on her own and needs HELP while in there). She needs every other task you take for granted, done for her: personal hygiene matters, put on shoes (she can do her socks, shoes no), make a snack, prepare a meal, answer a phone (well, when you’re non verbal that’s a bit hard to do), do laundry, change her sheets… or give me a hug. (That’s a hard one for me. I have never had a hug from her in 33 years.) I have had people over the years say to me things like “Why don’t you let her spread jam on a slice of bread” and my response- in my head is ” Gee, why didn’t I think of that?” as I am laughing to myself, you fruit bat. She can’t cut with utensils. Plastic or silverware. Not even spread with a spoon. Two years ago she actually picked up the knife I had out near her and she spread Nutella on a slice of toast. Mind you, it looked as though a slice of cheese went through the paper shredder, but she attempted it. I nearly keeled over and was overjoyed. I actually cried! But it’s never happened again. We have tried to let her brush her own teeth for 30 years but it doesn’t work. She holds the brush, and places it in her mouth, but just bites the bristles. The reason she has NO cavities is because the brushing is done for her. Or there are there are the times when people ask if we ever tried Speech Therapy. This one doesn’t anger me any longer. I just shake my head and laugh on the inside. Another one of those “Now why didn’t I think of that! Speech therapy…WOW! Who would have known?” moments.
The reason I decided to let my feelings be heard on this matter is an unfortunate ‘accident’ that went down here at home a couple days ago that involved our master bathroom and Jenni . Suffice it to say, we now are having 90 square feet of tile going in that room. I was so upset and throwing my own personal pity parade and kept telling my husband that “This is SO hard…I’ve been doing this same routine (literally) for 33 years and I am overwhelmed at this moment. I’m not young anymore, my rheumatoid disease makes it hard to do things and I have MS for Pete’s sake.” And as I was up to my elbows with- I won’t go into the disgusting details- I thought immediately of this A&E series that’s out there featuring young adults with Down syndrome, and all the while through blubbering and whining I was telling Dennis that “they’re not the typical examples of what a lot of us live with. ” (Let them come film our day… it would be under the categories of either a dark comedy or a horror flick .) I think the producers, Bunim/Murray, scoured the country and found this eclectic group and moved them all together in California- if they didn’t all live there already. The people are like NO other folks with Down syndrome I have ever encountered, and let me say, I have met an awful lot of folks. Not only through Jenni, but when I was a special education instructional assistant over 13 years. The cast of this show: their vocabulary, their speech and pronunciation of words is astounding. These adults are exceptional. (That’s why they have a show.)
We love Jenni and I wouldn’t know compassion and patience if not for her. I was sheltered, when I think of my upbringing. No spine, no backbone. Never spoke up but that all changed when she was born. She brought out in me the fight that most typical peers’ parents never have to contemplate when dealing with schools or doctors or dentists. I wouldn’t know what to do with myself without her. I find myself at times wallowing in the doldrums, thinking of all the things she has not been able to experience in life but then remember that she is happy, loved, safe and content, and enjoys her life as it is. She knows no different. I want people to know that having a special needs child can be trying and difficult and that no matter what you do for them to help with their education and therapies in their early years, you never know where that road will lead you to. And no reality/documentary series will ever show you a day in the life of a ‘regular’ family coping the best that we can.
What I would give for her to have a conversation with me. Or give me a hug.