Dear Lady Who Holds Our Fate in Her Hands,
I would like to thank you for your time with our recent conversations about Tgirl and her eligibility for a Supports Waiver. As the committee meets to make final determinations, I wanted to give you some additional information about our family and our daily lives and how a child like Tgirl impacts the lives of my husband, our typical son, and me.
First, I would like to give you some background information. As you may know, Tgirl is an adopted child. Actually, both of our children are adopted. We adopted them both as infants and at the same time. Tgirl and her brother, Tboy, joined our family on November 2, 2002. Although we were unable to have our own biological children, we did really want to have a family. We made the decision to adopt two infants, close in age, in order that they might grow up to be friends and playmates, and develop a close sibling bond that would see them through their lives. While Tgirl was a small baby, born about 8-10 weeks prematurely, we had no idea of the scope of her disabilities at the time of her adoption. In our minds, we were adopting two typical children who would grow up just as we imagined.
She was of course, small and delayed, although we did not find out the extent of her issues until after we brought her home. At 6 months, she weighed only 11 pounds and had no head control. However, we and her pediatrician remained optimistic and all figured that she would grow out of her delays. She was enrolled in Early Intervention Services. Around age 3, she had a second evaluation at the CDSI. At that time, the words “severely mentally retarded” were first used when describing Tgirl. They were devastating to hear. Of course, we were not blind to her delays (she did not walk until 22 months and remains without functional speech to this day), however, she was and is such a bright engaging little girl, that everyone who came in contact with her was convinced that she would grow and develop.
Although the CDSI did not issue a formal diagnosis, that visit completely changed our lives. No longer did we hope Tgirl would gain skills. Instead, we spent a painful year watching her get further and further behind her peers and coming to terms with what that would mean to all of us. I would attend Tboy’s preschool programs and fight to hold back the tears while thinking that Tgirl should be there next to him singing. For birthdays and holidays, when other moms are buying princesses and Barbies and Easy Bake Ovens, I continue to buy her cars, her most favorite toy. Today, at 7 and a ½, she remains mentally at the level of a 3 year old. I may never have a daughter who likes little girl things. And if she does, she may well be into her teens before that happens.
We do now know that Tgirl has a chromosome disorder. While it is quite rare, and we are unable to get any information on what it means long term, we do know that this is a congenital disorder that will be with Tgirl forever.
Now, we all love Tgirl, and there is no doubt that seeing the world through her eyes is a wonderful and heartwarming thing. But raising her is not without challenges. Therefore, I would like to highlight some of our challenges with Tgirl.
Tgirl does not sleep well and never has. We have recently started her on some medication that helps. But on any given night, she will be up screaming and crying several times a night before waking for the day around 4:30am. My husband and I have rarely had a full nights sleep in the past 7 years. Due to the logistics of our house, her brother’s room is right next to hers. Many times she wakes him up, depriving him of a full nights sleep. This makes him tired and grumpy, and which sometimes causes trouble at school.
After waking, Tgirl must usually be changed, having peed through her pull-up, often to the extent of wetting her pajamas and bed sheets. Due to her class placement, Tgirl attends a different school (on a later bell schedule) than our son, who attends our base. When I leave to take Tboy to school, my husband watches Tgirl. In the afternoons, I bring Tboy home, and again, my husband watches him, while I go get Tgirl. It isn’t really in the best interests of either child to spend an extra hour or more in the car. Fortunately, my husband works from home and that allows us this flexibility; however, this additional childcare time clearly impacts his working day. It is difficult to juggle two schools and schedules, but our base is definitely the better school for our son and we have to work to meet everyone’s specific needs.
Since Tgirl does not have functional speech, she screams and cries when she is in any distress, from being hungry, to sad, to tired, to scared, to upset. Having seen this example, my son often has temper tantrums. When he is corrected, Tgirl becomes very upset and will strike out at us.
After dinner, the children are showered. While Tboy is able to shower independently, we still must bathe Tgirl. As she is growing, this is obviously getting to be a bigger physical challenge.
We try very hard to give the children opportunities to do fun activities. Often, though, when we are out, Tgirl will become upset or tired, and cause a ‘scene’. Many times we are forced to cut our outings short and return home. Please imagine a 2- or 3-year old’s temper tantrum with the full force and velocity of a normal sized 8-year old. This is Tgirl at these times. Having to leave places early means our son misses out. Unfortunately, this is not a new experience for him. For many years, while other 4-, 5-, 6- year old boys were learning to playing soccer or swimming or playing on playgrounds, Tboy was spending every afternoon in a therapy waiting room while Tgirl received various therapies. This has made him shy and uncomfortable around peers to this day as he missed valuable years of socialization.
We also have many financial burdens that other families to not. For example, we are still buying pull-ups for our daughter, 5 years longer than most other families. Since she has no functional speech, we cannot figure out what is wrong with her when she is quiet. Is she sick? Tired? If she has a fever, we have no way of knowing – is it an ear infection? Strep throat? Each time something is wrong, we have to take her to the doctor. While we do have insurance, the co-pay costs do add up. Tgirl has now started medication to help control her behavior. This has added not only the costs of the medications, but also the costs of the specialists we must see.
My husband and I very rarely go out on a date night. Even without the additional financial pressures of a special needs child, the cost of an appropriate baby-sitter is much higher. With a non-potty-trained, non-verbal child, we cannot simply hire anyone to care for her. We do have access to people to watch her; however, their cost is easily double what we would pay a regular sitter. Adding the expense of a babysitter onto the expense of a night out, makes a date night all but impossible, given the other financial obligations that Tgirl has added to our family.
I would also like to emphasize that lack of communication is a very big issue for us. Tgirl can sign; however, her motor skills are so poor, that unless you know Tgirl and her interpretation of ASL, you would not understand what she wants. Her inability to effectively communicate I am sure contributes to her behaviors and frustrations. At school this year, she has access to an augmentative communication device. She is just learning to use it and it gives her a specific way to ‘speak’ and ask for things and comment on her world. Tgirl will need her own device to go through life with, and these are not inexpensive. We expect that this will cost us around $8,000-$10,000. This is well outside our insurance coverage.
We pray everyday for Tgirl to have a good and happy life. We pray everyday for our son to have a good and happy life. As Tgirl grows and her bad behaviors become more difficult to control, it is a struggle every day for us to help both of our children have good and happy lives. Having access to a Supports Waiver and the funding it would provide would alleviate some of the financial burden we are under, as well as allow us the opportunity to find help specific for Tgirl. This would allow us to have more focused interactions with our son.
Thank you for taking the time to read this admittedly long letter. Even just writing it, I have gone through a range of emotions – from crying for the lost little typical daughter that I will never have through to excitement that we may finally have some help to better provide for her. Please let me know if I can give you any other information to help you understand Tgirl and our family and how a Supports Waiver could help us. I look forward to hearing from you.