Thursday, March 11, 2010

School Daze

Homework Assignment:
Write five sentences about events in your life.

I was born in Guatemala. When I was born, my first birthday was Feb 15th. When I was 4 years old I had preschool with my sister Tate. Now I'm 8 I do not have school with Tate. Maybe next time when I have kids they will go to the same school.

sigh. I hope so, Tboy, I hope so.

Tuesday, March 9, 2010


Tgirl started soccer again this past Sunday. She plays through Abilitations, a company started by her former Physical Therapist, Miss T.R. as we call her. She played a year or so ago, in their inaugural season. They we took a break, but we thought it would be good for her to play again. (Can I just take a minute to say - there are some awesome activities for special kids these days. Tgirl can play soccer, baseball, swim, you name it. As hard as this is, raising a child like her, I am thankful that we have her in a time when there are so many doors open for her.)

TR has know Tgirl since before she was 18 months old, when she first started therapy sessions. PT was her first, then Speech, then OT (occupational therapy). I say Miss TR taught her to walk, my husband says it was his constant walking around the house holding her fingers. It was probably a mix. I know I said the other day that the happy, cute events you think you will remember for ever fade from memory, but the horrible things stay forever. But then when I started thinking about how long we have know Miss TR, I realized that one of the happiest days of our lives with Tgirl, is etched crystal clear in my mind. The day she took her first steps. She was 22 months old.

It had been a difficult time trying to get Tgirl to walk. I think at 12 months, she wasn't even really sitting up. Most days in therapy she would just work on standing up and balancing. I remember her learning to "cruise" holding on to a bench, and then twist her torso to transition to another bench. Week after week. Then she could walk behind a push toy. But still, no independent steps no matter what we did. Then, finally, one February day, it happened. Tgirl was wearing black knit pants - like leggings, but looser. She had a on a pink and white and sparkly silver striped turtleneck shirt. Her pant legs were rolled up almost to her knees so that we could see her feet and so she was in no danger of getting tangled up in her pant legs. Tgirl stood in the middle of the room, arms bent at the elbows, her hands near her shoulders, pointing out - like bird wings - for balance. I stood behind her a few steps and Miss TR stood a few steps in front of her with the bubbles. Then, Miss TR blew some bubbles and Tgirl leaned towards them and then WALKED to those bubbles. Three, maybe four steps, but steps all the same. "OH MY GOD!!! SHE WALKED!!! SHE WALKED!!!!! GO TGIRL!!!!" We screamed and clapped, I think I shed a tear or two. Miss TR says she has seen so many first steps, and it never ever gets old. I believe her.

Now, she plays soccer, running around the field.

And is happy after scoring a goal.

You know what is great about special needs soccer - you can even play with your hands if you want - it's all good for Tgirl.

So, here's to soccer, and here's to Miss TR, and here's to first steps, whenever they are taken. 

Thursday, March 4, 2010

Tboy - did you eat my candy? No Mom.

I am sitting here after a very busy morning, trying to refocus myself for what could be a stressful afternoon. Of course, I should be preparing for my meeting, but instead I am surfing, eating lunch (yes, I know - very bad to eat in front of the computer!) and trying to just give my brain a rest.

I ate a nice salad, a few (too many crackers) and then glanced up over my laptop screen, to the bag of chocolates sitting there. Dark chocolate squares filled with caramel. The bag says "rich chocolate, luscious filling". Really - who wouldn't be tempted with the words "luscious filling" staring them in the face??? Of course I had some (two, really, just two). I am a *bit* surprised that they are still there, though, sitting as they are generally out in the open. The last time I had candy in my office, it was found, even though it was well hidden.

It is a Christmas tradition here to put chocolates in the kids' stockings - chocolate bells, Reese's bells, if it is bell-shaped and chocolate, in it goes. The first year, it was all Tboy could do not to eat them all and forget about the presents and Tgirl ate them wrapper and all. That's my girl - don't let the fact that you can't open the wrapper deter you from a chocolate fix! I put way more in their stockings than any reasonable parent would let their children eat. So, after breakfast each Christmas morning I empty the stockings and put the candy into one bag and put the bag up in a cabinet. Unfortunately, some years my husband eats them all before I have had my fill.

This year, I wised up. Not only did I hide them from the kids, I hid them from my husband. At least, I did put them somewhere where he wouldn't look straight away - inside a bag, tucked away in the closet in my office. There they sat, most of them safe in their little cocoon, a couple of them taken each day. One day, I noticed that they seemed to be disappearing at a much more rapid rate than I would have expected. At first, I brushed it off thinking that we hadn't had as many left over as I thought. Then I went after my husband who said "I didn't even know they were there." But mostly, as long as there were still some left when I went looking, I was happy enough.

Fast forward a few more days. "Tboy - go feed Eli". The cat food is kept in the same closet as the chocolate. He was up there a long time. I went to investigate. There stood a little boy, caught, literally with his hand in the chocolate bag! TBOY!!!! Are you eating my candy!???!!! "No Mom". Tboy, I can see you chewing! "Well, maybe just one" Only one? "Yes - really Mom!" Well, don't eat anymore! "Okay Okay". He goes into his room. I came in a few minutes later, catching him chocolate-handed, unwrapping and eating another. I pat him down; his pockets are a treasure trove of candy. I take them away - Do NOT eat my candy!! "Okay Mom!" Have you done this before? "No Mom". What do you think? Do you believe that?

For weeks, I found those little candy wrappers in his room. I think I found one last week. Wrappers in the trash, in the closet, in the drawers, under his bed, in the corners of his room. I can only imagine that he had been secretly taking a several every day and eating them, hidden away in his closet. Perhaps, even stashing some away for another day.

Now, how has he missed the candy bag on my desk? Maybe because it's hidden in plain sight? Maybe he thinks it's coffee? Who knows, but I am glad he has missed it. Because when/if he finds it, he's going to make a huge mess of that luscious filling.

Wednesday, March 3, 2010

My Prayer

Dear Lord, please give me the grace to parent the children I have not the children I think I have.

Monday, March 1, 2010

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?

Sunday, February 28, 2010

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.

Thursday, February 25, 2010

Penguin Pants, Penguin Pants

[Ed. Note: Sorry for the delayed silence. Life happens, you know?]

One of my hidden talents is that I can make up a song about anything. One day in January, while taking Tboy to school, we were singing made-up school-day songs to the tune of Jingle Bells. Perfectly fine, until we got out of the car, and I was singing "Get out now, get out now, get out of the car..." a little too loudly, and only about 5 other people were standing around.


We have a pajama pants song that we sing. But we only sing it if Tgirl is wearing her ice cream cont pants or Tboy is wearing his penguin pants. When they wear them on the same night, well, we sing the song about 100 times. Tboy wore his penguin pants last night.


He had no idea why I wanted to take this picture, hence the look on his face. 
Penguin Pants, Penguin Pants!
Tboy has his Penguin Pants!
Penguin Dance, Penguin Dance!
Tboy do the Penguin Dance! 
Look out!!!! 
Here come the Penguin Pants!
penguin pants, penguin pants....
repeat forever



I think I made up the tune, so I can't really give you an idea of it. But if you know me in real life, you can ask, and maybe (maybe!) I will sing it for you.

Tgirl didn't have on her ice cream pants, but if there are pictures being taken, she always wants to be a part of it. So, here she is.

Thursday, February 4, 2010

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.

Paperwork, Paperwork

Chances are good that we are getting Tgirl a supports waiver slot. Yay! But oh the paperwork! And, apparently they are changing the laws and funding right now which means, well, I am not sure what it means for us, but it sure has other parents in an uproar.

The process is making my head spin. Here it is:

First, get Tgirl a full cognitive and adaptive evaluation. (This was actually in progress for various other reasons and the school psychologist was very nice and put a rush on it for us, which means it is coming home today all done!)

Then, once we have the Psychological Evaluation in hand, share it with someone at HHS.

She, in turn, shares with Tgirl's Medicaid Specialist (don't you wish you had one of these?). We get a referral to the Targeted Case Management agency of your choice (oops! I forgot I was supposed to be looking for one of these and now I think I am really behind the 8 ball.)

Now, for the State to determine Tgirl's eligibility for CAP-MR/DD, they will need the Psychological Evaluation, a statement from the Medicaid Specialist that Tgirl's Medicaid application is in process, and an MR-2 form completed by an MD (not a physician's assistant or a nurse practitioner - this is a shame because Tgirl's main provider is a PNP but we do have MDs also).  We can't take the MR-2 to the doctor until we have the Medicaid number to put on it.

Once the MD signs the MR-2, it's only good for 30 calendar days.  The State has 5 business days to approve it (15 if it's problematic - whatever that means).  Once the State grants Prior Approval to the MR-2, the Case Manager (that we haven't found yet!) only has 30 calendar days to submit the Initial Person-Centered Plan to Value Options for review.  Value Options has 15 business days for review (15 more if the plan is problematic). Except here is where I think the laws are changing even as I type!

On top of this, the Medicaid Specialist has completely different time-lines for Medicaid.

Got it? Good, and please can you explain it to me. Because I am also supposed to be rescheduling one and planning for two PTA meetings, planning a Family Night Out for Tboy's school, dealing with Band start up for his school, getting camp physicals and forms completed so that Tgirl (and Tboy, but Tgirl especially) has something to do this summer so she doesn't go crazy, getting Tgirl's handicapped parking tag so we can have less space to lose her when we take her out, figuring out what else I am forgetting, and on and on and on.

Monday, February 1, 2010


Well, we got some snow here in NC. Saturday it was kind of miserable going outside - snowy, sleety, gray and wet. But the hubster took the kiddos out for a little while. Poor Tboy - his wrists were bright red when he came inside.  Tgirl had some home sick from school Friday, but her temp was normal the next morning, so we sent her outside as well. (NB - I stayed inside where it was warm and dry!). Of course, that night she was miserable and sick again!

Tgril was a little tentative, but Tboy got right down to business making snow angels.

Unfortunately, Sunday both kids and I were sick. So, no going outside for anyone. Monday brought a day off from school and a sunny afternoon, perfect for playing outside.

First, Tboy and I went out, and just messed around. Then Tgirl came out. My world! It seemed like she said. Of course, she did spend all last week learning about snow in school.


She even made a snow angel. Can you see that smile!?!

We don't really have a hill to sled down, but it didn't matter. As it turns out, our front steps are snowed perfectly to make a nice little hill. Tboy discovered it first. And scaled it like a little mountain climber.

Then, the fun part! So, it's not the longest ride, it's the thrill that counts!

Once Tgirl came out, she was having so much fun, we had to try to get her to slide down the steps. There are no pictures of me hoisting her up there (since I was the official photographer and playmate), but Tboy was at his most gracious. He sat at the top, held out his hand, and said "Here Tgirl, take my hand!".

Then he worked to get her settled....Scoot down a step, Tgirl, scoot down a step!

While having fun, she wasn't quite sure what to do. Tboy to the rescue - Watch me!!!

Then, finally, down she went.

We all clapped and clapped - Good Job Tgirl!!!!

So, it had snowed first, and then sleeted, putting a nice crust on the snow. When you walk on it, it breaks apart. Perfect for an almost-8-year-old boy who is fascinated by scaaarrrry graveyards. Guess what the snow pieces made? A snow graveyard of course. Here's how to make one.
Choose gravestones carefully, and carry them over to the graveyard.

Place them just so....


Be careful not to break any (like this one!) A slightly dejected Tboy tries not to cry over a broken gravestone.

All done!

Another (admittedly close to home) outing, another happy day. With only a few episodes to Tgirl-zilla stomping on gravestones, we had a very very nice time outside, Tboy got to play helpful big brother and hopefully, I have two tired children who will sleep well tonight!

Tuesday, January 26, 2010


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!

Monday, January 25, 2010

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.

Thursday, January 21, 2010

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.

Sunday, January 17, 2010

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."

Thursday, January 14, 2010

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.

Monday, January 11, 2010


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.

Friday, January 1, 2010

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.