As all of my family and friends know, our youngest daughter Jenni, happens to have Down syndrome. She’s a person first, a ‘dolly doodle’ second. My husband and I have certain nicknames for not only Jenni, but for other members of the family. It’s a term of endearment, nothing else implied when I call Jenni our ‘dolly’ or ‘dolly doodle’. When she was just a tiny little thing nearly 30 years ago, a friend that I met in the infant stim program we both attended with our baby girls, was married to a musician. If I can remember correctly, she told me that she wished he could write a song about kids with disabilites….. something like: Hannah Handicapped, Dolly Downs, etc…… Well, the dolly downs stuck with me and I referred to Jenni as my dolly. If I mention the dolly or my dolly, family knows who I am speaking of.
Now when I had Jenni, I was very naieve. I grew up around women who were pregnant, had their babies and all was right with the world. I never knew that so many heartbreaking things can and do go wrong in life. I learned that lesson with my first pregnancy, Kimmi. (For that story- my very first blog, “Reflections”- it’s all right there for you to read). With Jenni, I truly learned hands on, on how to raise a child that is considered by society’s terms “Less Than Perfect.” I loved her from the moment I saw her round little face and she looked into my eyes. We didn’t know she even had Downs until she was 2 weeks old (again, read REFLCTIONS) and I bonded with my sweet little angel. When Jennifer Jillian Wright was officially labeled as having Trisomy 21 from UCLA’s genetic clinic, I cried, and cried some more, then thought “What are we going to do? What can we do for her?” I had an almost 4 year old and a 19 month old and I was concerned for all of them. Dennis went to the local library (BIG MISTAKE) and brought home the ONLY books with any reference to having a baby with a genetic disability. Mind you, this was 1983 and the books were copyrighted from the early 1950′s. He brought home 2 books and I still remember the titles: “You and Your Mongol Baby” (seriously) and “Your Child With Cretinism”. I never, ever had heard the word cretinsim. I was mortified. I flipped thought the pages and said ‘NO WAY’, get these things OUT of my house. After wracking my brain I recalled a nurse I worked with in the late 70′s who gave birth to a baby girl who had Downs. I wasn’t a friend of hers but I remembered her last name because it was a very different name. I called information and gave them the name and I was given a phone number. I held my breath and hoped she would know who I was. She remembered me from the medical group (said it was my smile and laugh that she remembered of me…. made me feel good) and she asked me a million questions and if I had done this or that and had been in contact with this agency or that agency. (None to all). Long story short, she gave me info, phone numbers and Jenni was enrolled in an infant stimulation program within 2 weeks (she was now 6 weeks old).
Jenni developed close to normal the first year. The next few were not so bad either but as she grew older (5 -8 years old) there was a noticeable difference. (I had the two older girls and I could see what they did and Jenni was no where near benchmarks at the same age). She developed some quirky idiosyncracies when she was around 8 years old. She always had to have every dish towel we owned in her lap in the recliner. God forbid I needed a towel to dry my hands off with after being in the sink. She would become really upset. Finally I had to hide the towels and that set her sonar off. She’d be on a dish rag recovery mission. Then there was the ‘sock’ phase. (Oh Lord…… the socks)! She had to have every sock she owned on her bed or in her chair when she watched tv. I had a laundry basket to haul these things up and down the stairs for years. In recent years, she would put underwear over her shorts or pants and I’d go round and round with her about taking them off. It’s like hitting your head against a wall because she can’t reason. It’s like dealing with someone whose going through the terrible twos, permanently. As Dennis would tell me when I would throw my hands up in the air and announce ‘I give up’, he’d say “she’s not hurting anyone and she’s not out in public, let her do what she is doing until she gets bored with it.” It worked. After a month or so, she dropped the wearing-of-the-underwear-over-the-clothing. The past year she was on a ‘trash’ digging expedition. Not ALL our garbage, just certain items that tickeld her fancy. She had to have yogurt foil lids, sour cream films (that go under the lid), any type of foil or plastic lid out there. Heaven help us at mealtime when she’d see a tiny sliver of plastic stuck around the margarine container. You’d think she saw gold and would be clammoring to get the margarine in her hands. I had to wash all this stuff (yes, washing our refuse) and she would taken them to her room and tightly pack these things in gallon sized zip lock bags. Every so often when she was in the bathroom or eating, me or Kimmi would go in her room and remove just enough of this trash without giving her suspicions that it had been ‘deep sixed’, because she couldn’t move around on her bed. We had to be careful though, because her mind always has an inventory going constantly of what she has in those bags. Also during this time she was into ‘sticky’ labels from food, you know, Dole banana stickers. Any kind of sticker stuck to food. She HAS to have them peeled off and if it doesn’t come off smoothly, watch out! (Again, you can’t reason with her). She looks on the bathroom countertops and the linen cabinet top outside her bedroom and will take whatever she feels she needs. Most of the time the items she hoards are Kimmi’s (computer parts, attachments to the dirt devil, tweezers. You know, typical things one would be asked to produce if they were on ”Let’s Make A Deal.” Now the latest thing that is driving me around the block: she is ripping tags off all of our bath towels, her clothing, anything she can get her hands on. She may be a perpetual preschooler but good grief, this girl has the upper body strength of Iron Man. I have walked in the bathroom where I have seen, her perform, in one swipe, the tags coming off my JC Penney Home Bath Towels. These tags weren’t loose or anything. I was stunned. But it’s getting to where my little dolly doodle is not only ripping tags off her tops but ripping holes through them as well. I bought a half dozen summer tops over the last month for her and they all have oh-so-attractive holes, where the tags SHOULD BE! Anything more I buy, I am cutting them out myself before she gets her paws on them. She’s had my tops and unmentionables in her clutches but luckily I grabbed them and explained that this is a big NO NO! I know, I sound like I am complaining about her but I’m not. Really. I just wish I knew what makes her tick and how she goes from one obsession to another. I understand that her little piles of ‘things’ she collects is her way of having some kind of control, but I tell you, I wish there was a handbook. Hmn, maybe I’ll write the handbook of ‘Dealing With A Dolly.’