Sigh

Well, I knew I shouldn't have said anything! Last night, Tgirl was up off and on until after 11, crying and being miserable. Then she was up at 4:30 for the day. Not to be outdone, Tboy woke up at 5, although I think we did manage to get him back to bed for at least 30 minutes.

Lesson learned: next time things are going well, just don't say anything!

Sleep, An Interlude

Ah sleep, glorious sleep.

Our children, both of them, are not very good sleepers. Although Tgirl is the worst of the two. She often wakes up several times a night and is typically up for the day at 4:30. Tboy takes hours to settle down and fall asleep. If we put him to bed at 7:30 or 8:00, he will often be up until well after we've gone to bed doing whatever it is he does. Then, he's up and about by 5:30. This does not make for well-behaved or happy children.

For whatever reason, the last week or so, we have been experiencing sleep nirvana. Tgirl is going straight to sleep at 7:00 and, although she may get up a few times, has been sleeping until past 6am. Tboy has taken to turning on his nightstand light, reading for a bit and then falling asleep before 8:30 and sleeping until 6:30 or even later. We have found that for whatever reason, having the light on is really helping him, so we are just leaving it on when we go to bed.

I know that by simply acknowledging this nice respite we are having now I may anger the sleep gods and find us back to 'normal' before I know what has happened. But still, it is nice to sleep and wake up on my own, and not to the sound of a screaming child.

Bunker, Dunker, and Baby Bunker

So, yes, in real life I have two children. But sometimes I have more. Around this time last year, Bunker joined us. I will admit, I think 6 is a little old for a boy to start having an imaginary friend, but here he was in all of his glory.

Bunker is the last name of a boy who had recently moved, and Tboy promptly appropriated it. I think he reminded him of his lost little friend, and also provided a handy someone to talk to. Since he's been here, he has ranged in age from being Tboy's twin to 16 or 17. Bunker was soon joined by Dunker of unknown age, but sometimes he is 10 and sometimes the three of them are triplets, and Baby Bunker. Baby Bunker isn't always a baby, but for sure he is always the youngest. Candice and Isabella live with us too, but they are more recent, a product of the family's love of Phineas and Ferb.

Lately I have noticed that B, D, and BB aren't always around. Their recent appearance has made me think. Tboy has been having a very hard time lately; he's been in trouble at home and school. His stuttering is back and he is easily frustrated. Tgirl is causing concern and turmoil. Boom! There they are - B, D, and BB back in all of our conversations. It finally dawned on me that they come and go based on his moods. They obviously give him some security and also, I think, something safe to talk about with me. And, more importantly, I think they give him normal siblings.

They are endearing to me, even if I think he is well beyond the age of having imaginary brothers and sisters. But now that I have managed to figure out why they come, I feel that is it up to me to make sure he doesn't feel that he needs them. Obviously, whatever is going on in Tboy's mind right now and how we are reacting to it isn't working for him. I will have to help him sort it out. For now though, it is nice to have these three around to help give him a little comfort and control and, (for me) a little breathing room.

But Bunker, Dunker, and Baby Bunker, I will miss you when you are gone.

Gecko House!

I say no to Tboy way too often. Why? Why not? I have a variety of reasons that range from not enough patience on my part to my constant state of exhaustion to my great disdain for messes. However, after the infamous 'Now it is time for the sprinkles' glitter incident this past Christmas, I feel as though I can clean up anything.

Last week, I resolved to think about why I am saying no - BEFORE I say it - and see if I can't say yes instead. I wouldn't say I have mastered this skill yet, but Tboy did have a nice 10 minutes playing with Lite Brite before school one day. Ordinarily, I would have said - no, we are leaving in 10 minutes. But really - why not? So, he played and I cleaned up. Not that I am gloating over one success; we've had more than that this week and at least we are on our way.

This morning, Tboy came along with boxes of his play geckos and one chameleon. Here are the geckos. Do not ask why they are resting on a bed of underwear - I know not. It must be comfortable if you are a gecko.

Here is the chameleon. Obviously, the red one is the chameleon, because it has taken on the color of the shirt it is using for it's nest.

Now, in case there was any doubt what is in this box, Tboy made a handy label.

I know it is hard to read - it says "comenleon". I love little boy spelling.

Apparently, while these nests were good, they weren't good enough. "Let's make gecko houses Mom!! I need water and food and pools!" Yes, these little geckos need their exercise, and so must have pools. Here is where I got to practice not saying no. Water? Tboy? Playing? BIG MESS BREWING! But, then I caught myself, it is just water, it will dry. I did however, limit the amount of water he could have and the size of the dishes.

Here is Gecko House, bit by bit.

First, we got the food ready. See that small cup - that is the drinking water - ha!

Tgirl only messed this up once - she had to stick her hand in the bread and grab and through. There weren't *too* many tears and screams.

Then, everything went in just so. The orange tire is the playground.

The finished product - ready for the big moving in. You can't really see it, but the drinking water cup is tucked behind the food dish. And I did relent and let the poor thing have a swimming pool.

First, we eat

Then, we swim!

While Tboy was busying finding things for the house, he came across this little guy. He was left to languish on the kitchen counter because "he is too old Mom".

Now that the chameleon is all settled in the Gecko house, he had to attend to the other mess of amphibians. I guess this is a resort. Can you believe all of the water bowls that are in there??!!!??!! At least they are on a bed of towels.

Tboy and Tgirl went upstairs, where they promptly started fighting and screaming. No good time ends well, it seems. Off they went, banished to their rooms. While I would give anything to have an interlude that did not degenerate into screaming and crying, at least we a bit of fun first.

Where are the Gecko Houses now? Why living in the cat house, of course. I guess it is a Gecko Condo.

"Mom - geckos are my favorite amphibeans. Well, except for frogs."

Please Give TGirl a Waiver

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.

Sick!

Last Wednesday, Tboy woke up sick.

He woke up saying his stomach hurt. It's hard to say if he fakes it or not, because my number one fear is vomit! I would rather cut off a limb than throw up. The mere thought of my children vomiting is enough to send me to my bed, quivering in fear, with my own tummy bubbling. He absolutely knows he can get a rise out of me if he says something is wrong with his stomach. Since it was the first week back at school after Winter Break, I thought he may indeed be faking. I sent him back to bed and said if you throw up, throw up in the toilet.

Unfortunately, he was telling the truth! Before long he was running to the bathroom throwing up in the sink. The TOILET Tboy - USE THE TOILET. Unfortunately, my fear of vomit is such that that is about the amount of sympathy I can show my own child when they are sick. Oh my, the boy even threw up on his carpet.  Fortunately, a few vomits and few emergency trips to the bathroom and he was back to running around the house, happy as a clam.

The odd thing here is that this is only the second stomach flu he has ever had. He had one earlier this school year and that one was also in and out of him in about 4 hours. Yes, the boy made it to 7 before ever throwing up. Contrast that to Tgirl, who for years threw up often and for days (or at least that is how it seemed to me).

For me the countdown is on until Tgirl will start throwing up. She can't tell us if she feels sick, so usually she is fine, then a bit down and then throwing up without warning. It sucks. This is horrible, of course, but I am just looking at her all the time wondering - now? today? tomorrow? At night? During the day? What if she throws up while I am out with her?????? What if she throws up at school and I have to go get her and then she throws up in my car on the way home????

She will get sick, I know. Right after I let my guard down. For now though, life goes on.

Pretzels and Penguins

I got a bread machine for Christmas. Well, actually, I bought myself one while shopping during the Christmas season. I count it as a present.

Today I used it to make pretzels. I set the dough to start in the machine and did a few chores. While the dough started, Tboy got busy with play dough. (By the way - a fresh supply of play dough makes it under our tree every year. We don't play with it often, but when we want it, it is nice to have.).

First, he made a giant tortilla. It actually was like a burrito, but he kept calling it a tortilla. In his mind, he was having some contest and he was going to win with the biggest one.

This was snapped right before Tgirl smashed it and caused a big to-do. She was promptly sent to the naughty chair.

Here is my pretzel dough after it came out of the machine:

Shaping took a bit of time. The directions said to roll them into long strips. In my mind, I pictured this just like making a long play dough snake. It didn't work like that; I had to really manipulate and stretch the dough to get long strips and had better success with some pieces than others. Here they are resting.

 

While I was doing these, Tboy made this incredible snowman. I wish my picture did it justice, because the snowman has both a broomstick and a cute red bird, eyes and beak included, in its hand.

Next the pretzels were boiled. That was pretty cool I think. It inspired me to try bagels, although I have no idea when I will get to that.

Now, for the penguins! It started out as Penguinsaur. This creature, I can only assume, is based on Humongosaur, an very popular creature in our house at the moment.

My pretzels were dipped in a water and baking soda mixture, placed on the baking sheet, and sprinkled with kosher salt. After about 15 or minutes in the oven out they came.

While the pretzels finished up, Tboy finished his penguin, morphing it into a much gentler looking being, with an open mouth - "I added some more details Mom".

 

So you did, my little Goo, so you did.