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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

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Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Sunday, January 17, 2010

An update at long last

I forgot that not all of you are on Facebook with me. I reported on there that the girls did not see their dentist after all. We had to cancel the appointment because Amanda got sick the night before. She seemed better in the morning, but feverish, so we knew we could not have her sedated.

Meghan can get her tooth filled later. It is a baby tooth and I am not overly concerned as it is a tiny cavity (very tiny). Amanda was getting her teeth cleaned, both were getting X-rays. In truth, I am wondering why I would put my daughters through sedation for two very minor things. What was I thinking?



Our youngest son informed me he wants to move out of state, I am still trying to get used to the idea that he will not be in Tucson. I may not like the thought, but we all have to live our own lives, and if his takes him thousands of miles away, I have to accept it. Selfishly I hope he waits a while, he was going to take respite training and help me with the girls. I need a few hours a week away from home and I would rather a family member provide the care than a stranger. We have never used respite, we always had children who could help, but their lives are busy and they rarely have the time. Well, we also rarely ask them to babysit, we are true homebodies...

Julia has had a really bad month so far; her latest adventure involved being a passenger in a car that hit a tree. She hurt her knee, her head, bit her lip, and is lucky that she was not thrown from the car, she was not wearing a seat belt...she is hobbling along on her crutches. X-rays showed not broken bones, and Julia sees an orthopedic doctor Tuesday to be certain she did not tear any ligaments. I still feel haunted by the image of that car curled around that tree, and I am thankful the driver and her three passengers are all OK.

Meghan has been very opinionated and grumpy of late, we are thinking that her female hormones are beginning to increase, meaning she is getting close to the dreaded puberty. 9 certainly is not too young for the first surge of estrogen, I am NOT ready for this, I surely am not. She alternately seems like a small child and then boom, she is tweenie. Sometimes it gets confusing and I wonder if other moms have the issues I do about how to treat their daughters at this age; specifically daughters with trisomy 21. She is no baby, she is still quite young emotionally though, but I can see a young woman emerging too. The attitude is also very much there, that snarkiness they get at that age.

Her alopecia is progressing again. It completely stymies us and I find it depressing as nothing we do seems to help for a long period of time. I am grateful she still has her eyelashes and half her eyebrows, last time it was severe, she lost most of both. Her poor eyes were always tearing from the debris that got in them. She does have a lot of hair, just huge bald spots on the left side and no hair at the nape of her neck.

Kara continues to have issues with eating, wanting to eat, and crying if others are eating and she is not. She takes food off other family member’s plates, opens the fridge to get food out, and climbs on counters to find it in cupboards. Frankly I am at my wits end with her behavior. She is in time out a lot. The other day she broke the handle off the refrigerator, I guess all the times she and Meghan hung on it made it develop a weak spot. Kara does not seem to understand that she is full; she can eat as much as me at dinner and still want more food. We joke that she really has Prader Willis Syndrome and not Down syndrome; though the issue with food is common among orphans. Since Kara is not a typical child, I believe the issues is compounded, whereas a typical child adopted from an orphanage would eventually trust that food will always be available to them, Kara continues to feel stressed about it. I do tend to give her anything she asks for within reason, a banana, a slice of bread with butter, a drink of juice. She loves fruit but prefers softer choices. She also adores corn chips! She is chubby though, her little pot belly is making it hard to snap her pants, yet the next size up is 4 inches too long for her.

She is getting better about making her needs known, and will bring cups to me if she wants a drink. She has been known to throw said cups at my head as well, but that happens rarely. We are trying to figure out how to find a way to block off the kitchen to her, but she is resourceful and will likely find a way around it.

If not for that behavior, she would be a complete joy; she is silly, loves comedies that involve slapstick humor and has the most infectious giggle. She is loving towards family, loves snuggles and kisses. Adores pretty clothes (you know that makes me happy) but hates wearing shoes. She is learning to play without hurting her sisters. She and Meghan love each other and Meghan often leads Kara around the house by the hand, I hear “Come on Kara” all day, at least when I am not saying; “No Kara, out of the kitchen Kara”. Considering one of the reasons we wanted to adopt another little girl was for Meghan to have a sister who would understand her and vice versa, big sister Julia is 8 years older and too old for playing dollies. Kara and Meghan are truly sisters in every way! Now Amanda seems to be the little sister who just gets in the way, but wait until she is walking! She is small, but strong and mighty!

Amanda is growing and changing, she obviously loves her daddy above all the rest of us. You can see that she is maturing emotionally; it is obvious that she loves the company of others, but she still prefers to sit alone outside doing one of many of her repetitive behaviors. It seems a lot of them have decreased, but there were plenty to begin with and she self stim’s with the best of them. One behavior gets very tiring; she will sit with us, grab the necklines of our shirts and pull until they stretch and sometimes rip. She also likes to scratch us while doing this. It is strange because she will sit there perfectly happy and then just reach out and do these things, no reason behind her actions. impulse control issues I suppose.

We are having issues with the kittens biting her hands and scratching her. I believe that she causes most of the problems by putting her hands in the cat’s mouths and pulling on their jaws. She gets retaliation for this from the assaulted felines, but like Kara, she continues to do it afterwards. Slow to learn a lesson, a common theme with our little girls. I put hand cleaner or vinegar spray on Amanda's hands; both taste terrible, and it deters the kitten who bites her fingers the most, seems to work. The kitten also gets a spray with the water bottle.


We have been woefully unable to get a PT for either she or Kara, our other therapists have asked their PT friends, our services coordinator has looked, and no one is available. Our state is cutting budgets to the extreme and human services jobs are being cut left and right; this includes social workers, services coordinators, therapists, teachers, etc. It is a travesty that they are taking away from the very population that cannot vote; the disabled community. Of course they have met the ‘in your face” parents like those of us who advocate for our children, and the state backed off from cutting all Early Intervention services last year, but it took it's toll on the therapist community and availability, many quit seeking job security. They have a battle on their horizon if they think they can take anything else away from our children.

My girls have not lost anything because they have long term care. I am certain the state will find a way to take from that too given time, they are already discussing cutting respite and habilitation from families who care for a member with a disability. They try to scare us regular folks by saying they are cutting police and fire department workers to balance their budget, but if you truly pay attention, you would know that was a flat out lie. Many of our government workers take furlough days, unpaid days that they all complain about. I believe they should have to sacrifice like the rest of us, my husband, also a state employee; he has not received a raise in 2 years. Yet our insurance has gone up, so we actually get less than we did two years ago. All of us are tightening our belts, they can too. They can also stop trying to scare folks into voting for more money in budget overrides stating that we do not have enough police on the streets. I beg to differ, they are there, they are just not doing their jobs. I cannot count the number of times I see two or three police cars in parking lots for two hours or more, just sitting there, maybe doing paperwork, or maybe eating, but they are not on the streets where they are supposed to be. Seems the paperwork should be done at the station after their patrol hours are over.

Two years ago a woman living one door away from us was abducted from her home, they believe Kay was murdered. The day her sister reported her missing there were 30 police cars in front of and on the side of our house. 30!! Yes I counted them; our house was cordoned off, and I had nothing else to do. None of them were needed at the crime scene and I heard the commanding officer tell them to leave. Kay was already gone; they had found her burning van down the street. The officers just wanted to be where the action was. So who was patrolling our streets then? Who was making sure we were safe? The same holds true when any major crime occurs in town, dozens of police cars rush to something two can handle. We do not have a shortage of police; we have a shortage of common sense and work ethic. And no, they never found Kay; it will be two years Valentine’s Day. Her family suffers not knowing what happened to her. Her house sits empty with a poster affixed to a sign asking for anyone to come forward with information. I am not certain how long they will let her house sit there like that, but for those of us living here; it is a constant reminder that life can go wrong very quickly and out neighborhood is not all that safe, but truly, what neighborhood is? Our doors are locked at all times.

2 comments:

Alice said...

I understand how you feel about the puberty issues. We were very sad to discover that A hit puberty in the 10 months since we had last seen him. We are trying to balance out the issues. So we watch Blues Clues for what it teaches him, Ben 10 for age-appropriate monster action, and try to deal with issues a little boy who wears a size 8 shouldn't have to deal with. I just wish the hormones would have given him 1 year home to adjust before hitting.:(
I will keep praying for you and your girls. You really have your hands full. I hope you can get a few hours respite. I so appreciate 15 min. to myself!

Leah said...

Angela (now 13) started puberty at 9, and she just got her first period last week. For two years we were told "any day", and for two years I told myself I wasn't going to freak out about it. LOL Then, when it finally happened, we were in such a hurry to get out the door for an event that it really was a non-event! Not only that, but later that evening while collecting laundry from her room I discovered she'd had it for a day or two before! Either she didn't know what was going on, or thought it was something else. Who knows! Thankfully it was so light that it wasn't a big deal.

As for voting? People with Down syndrome can vote! Or any body else with a disability, for that matter. And yes, I will absolutely 100% be coaching Angela on who to vote for when the time comes!

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