We Call Them Gerolsteiners

Here is what we are having for dinner:

We call them Gerolsteiners. Yes, I know that is really bottled water. They are really Desperised Bierocks, a recipe that I cut out of the paper years and years ago. We couldn't pronounce the name so we came up with this one.Why? I have no idea.

File it away with the scores of other things that I *swore* I would remember and have since forgotten. Like some of the really cute songs we used to sing to/about the kids. We had one for their nap time, back when they were babies, sung to the tune of Gilligan's Island. I wish I remembered the words. It started out something like "Just sit right back and you'll hear a tale, a tale of a fateful nap," and that is all I remember. The ending was "My sister she just laughed at me, and sucked her little thumb, sucked her little thumb". I am sure there was something funny in the middle, but is gone with time. I even remember my husband saying we should write down the lyrics so we would remember them when the kids were older. But no, I was so sure I would never ever forget that little song, I never did.

Why is it that it seems the happy little memories you think you will remember forever fade from memory and the horrible icky things you would much rather forget stay with you forever?

Where are the Well-Behaved Children?

This past week, I received an e-mail from the mom of one of Tgirl's classmates asking me for some advice regarding one of her children - a middle-schooler. I don't have a middle-schooler. And I don't have well-behaved children. But she thought I would have some advice or insight into her situation

I did give her some things that we do, what we try to have work for us, books we read, etc. But I also let her know one key fact - that every family has issues. I have been learning that myself lately. Because most of the time I imagine other siblings embracing their special brother or sister (or their typical sibling for that matter) and life is just rosy all the time. It is easy to sit inside your family bubble (and if you have a special needs child, that bubble can be very small and confining at times) and think that everyone else has it so together, isn't struggling, has perfect children while you struggle to make it through the day, get your kids to school without them killing each other or whatever. Guess what - *everyone* has something going on in their family - it's just that nobody talks about it. Even if things are fine this week, there was a time last week when chaos ruled. I've learned that talking to 'typical' families, and I've learned that talking to Holland families. Although in the latter case, the issues do seem more acute. What drives the issues with the other sibling in a family like mine? I believe it is a mix of personality inherent to the child and the stress-filled dynamic that the special one brings. There is no getting around that second point. That dynamic makes it mark on every single member of the family every single day. The baseline level of life stress is just higher. The joy is much sweeter, though, which is evidence of God's grace for us because otherwise we might never make it.

The day I wrote back to the mom, it was generally going well in our bubble. Tgirl hadn't been sleeping well, but she was holding it together. Tboy's attitude had taken a couple of days off and the prior afternoon he had slowly, but confidently, worked his way through his math homework, which is a constant struggle for him. No sooner had I written back to the mom then I had to go pick Tgirl up from school *2.5 hours early* because her behavior was so bad and disruptive her teacher thought it would be better if she left for the day. And what was going on at our house at 5:30pm that same day? Tboy, who had started on his homework at 3:30, was *still* in his room crying and having a tantrum over it. Then he had a tantrum because he didn't get the toy he wanted, which I had been holding back until he did his homework without crying.

I was never going to admit that this type of stuff goes on in our house, but it does and it is a fact of life, and this is supposed to be about the good and the bad of our lives with Tgirl. But I will add this post-script. Tboy had his meltdown on a Thursday, which means the next day was Friday - a day with no homework if you are a second-grader. He came home from school and asked to do extra homework so that he could prove he could do it without crying and earn his toy. I gave him a small writing assignment. Which he did, beautifully, carefully, and coherently. Turtwig - meet Tboy.

Does Tgirl?

Does Tgirl walk on a curb for 10 steps without falling off? Never
Does Tgirl pour from a container? Never
Does Tgirl pull on a shirt? Never
Does Tgirl button buttons? No
Does Tgirl know big, little, more, less? No
Does Tgirl spell her name? Never
Does Tgirl use scissors to cut a straight line? Never
Does Tgirl color in the lines? Draw simple shapes? Write her name? No, no, no.
Does Tgirl join and zip a zipper? No
Does Tgirl hang up her clothes? No
Does Tgirl pull up her own pants? Sometimes, but she cannot get them on her legs.
Does Tgirl carry a plate to the counter? Rarely, she would just drop it.
Does Tgirl attend to tasks? No
Does Tgirl follow 2-step directions? Rarely

I sat through an interview with the school psychologist and answered questions about Tgirl. There were some of positive answers (sure she can sit and hold her head up), but knowing you are answering "Never" over and over again to things that 7 year olds should do, well, it's draining.

I did say the school psychologist was being helpful. And she did score my assessment and give me written evaluations today. And I know numbers don't begin to tell the whole story. But they are a part of her, and we make decisions based on them.

But the results have been going through my head all day. Swirling swirling swirling. Clouding all of the other tasks I had to get done this afternoon. Let's just say I am glad Tboy didn't have any homework, because I would have never had any patience to deal with it.

So, Tgirl is a series of numbers. What are they? IQ 53 (which is higher than the last time she was tested, so I'll take it). Adaptive behavior age equivalent 2 years, 4 months. When she was three, she had an age equivalent of 18 months. Almost 5 years, and we have gained 10 months. I wonder what the next 5 years will bring.

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.

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.

Haircut!!!

First, an aside. When I started this blog, I intended it to be more about Tboy. This is because I think the 'typical' child is really the other child in a special needs family. But it seems that I really only write about Tgirl. I just felt compelled to say that. I do have things to say about Tboy, but I guess I am just not ready yet.

Now onto the post!

We are going to get Tgirl's haircut in a few minutes. We cut it short over the summer for several different reasons. Not the least of which is she was getting tired of having her hair blown dry every night. I was also not relishing the thought of drying her hair night after night after night with no end in sight. So, we chopped it off. She loved it!! It is also nice because as it turns out, she can comb her own hair now - which she also loves.

Unfortunately, she is often mistaken for a boy, even when she is dressed in pink. At no time was this more apparent than late summer/early fall when she was in a 'wear her brother's clothes phase'.

Anyway - we are going to get a haircut in about an hour and we will see what we end up with. It's been about two months since her last one. I think I want it to be wispy-er and shorter to see if that helps.

Be back later!

Here she is :-)