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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Sunday, September 27, 2009

Please donate to our Buddy Walk!

It is that time again, our local Buddy Walk is coming up soon, Sunday October 26 from 2-6:00 PM at the DeMeester Bandshell.

Our Buddy Walk sometimes gets ignored by the press, such a shame as it is always a wonderful event with so many families attending. I encourage all of our friends and family in Tucson (and all over AZ) to come and show your support of our girls and all people with Down syndrome.

Please give a little to our fund, our goal this year is $500, all the donations go to SANDS and they in turn support The Down Syndrome Connection and Crecer de Amor, local support groups. Go to the SANDS website and read about all they do for our community and Southern Arizona.

Wednesday, September 23, 2009

The girls having fun in the pool

Today you are You, that is truer than true. There is no one alive who is Youer than You. -Dr. Seuss, author and illustrator (1904-1991)

Kara, she loves getting her picture taken and then looking at herself afterwards. She was pretty happy yesterday, playing with Meghan, both of them giggling, splashing. Amanda turned her back and looked the other way, no matter what Meghan and Kara did, she would not acknowledge them. It makes me sad when she isolates herself that way.

Silly Meghan, all she does these days when I try to take her picture is stick her tongue out and laugh at me, so I got this picture without her tongue LOL. Meghan has alopecia aerata, in May her dermatologist told me she was failing the squaric acid protocol, she mentioned steroid cremes or injections, but we decided to try to alter her diet instead. We eliminated gluten completely and began to wean her off dairy, specifically the 4 glasses of organic milk she drank daily. We bought some whole grain organic rice milk, vanilla flavored, and gave that to her instead, then weaned her off that to plain organic rice milk. She does well on it. In late August we noticed that her hair was growing back in several places, she has tiny tendrils of new hair all over her head, so we feel we are on the right track with this. I know it is only hair, but it makes Meghan happy to have her hair back. You can see the shorter hair along her temple in the picture below, that is all new hair.

I love this picture of Kara, she looks so sweet, you can almost see her dimples, I do not know if it is her low tone or not, but they do not always show when she smiles.
Amanda just had an off day yesterday, she went off on her own, would not play with the girls at all, barely smiled. When she had feeding therapy she would not cooperate and would not look at Ms R at all. Right now she is rocking on her dog, backwards. We feel like we are making great strides with her and then those days happen and it makes us wonder if anything is helping...frankly, I do think it is, but we can get pretty discouraged. She did clap last night at her sisters Julia's musical theater performance, though she was keening quietly the entire time. She was just so unhappy.
Amanda ignoring all of us, she did not enjoy her pool time yesterday, I think she is fighting a cold, and after the flu too, she also has a few chigger bites, she loves to play in the grass, I guess that is where she got them? I will be glad for cooler weather when all the bugs go to sleep, bugs love her.

Tuesday, September 15, 2009

Feeling better

This flu, or whatever it was, marched through the house and left behind coughs that don't seem to want to leave, but the headaches and bone aches are gone and our energy is returning! I am grateful to feel human again! We have too much to do to be sick!

So we go back to our regular routine, which today includes feeding therapy for Amanda and 4 hours of schooling for Meghan, mixed with laundry, cooking, naps, and diaper changing, you know, regular mommy stuff! While I truly miss going to work, and the last few years, the hours were minimal anyway, I do not miss the stress of trying to get out of the house on time. I worked for 25 years; it is a huge adjustment for me not to do anything outside the home at all. I wonder if I can return to group fitness instruction being an almost 50 something. Will clubs even hire a WELL seasoned pro? (Grin) I know I need to get out and do some things alone, people tell me this repeatedly, I suppose eventually i will be able to, but right now, I have too much to do here.

I was not too thrilled to wake up at 5:45 AM this morning, wished I could have slept in, but I was up for the day. Tom was already in the shower, getting ready to ride his bike to work this morning, the first time since he fell sick two weeks ago. The school is 11 miles or so from here. I think he is getting used to his new job, teaching one chorus class and the rest technology. It is a huge change for him, and I know his love will always be music education, but we all do what we have to keep our jobs in this economy. This too shall pass; I have to believe that he will be allowed to return to what he truly enjoys teaching some day (year) soon. I also believe that regardless of what he teaches, he will do a great job.

Julia is learning how crazy life can be when you are in multiple activities, musical theater, chorus, hip hop crew and a hip hop class that starts on Friday, add to that school and work, and she is pretty tired at the end of each day! Being a junior is exciting though, and she is taking a few AP classes; History, Anatomy and Physiology, and English.

Meghan is growing up; every day I see positive changes in her maturity level, with little backslides to be certain. Seeing her play with Kara and Amanda, hearing them laugh as they twirl around and around and even seeing them play tug of war with dollies makes me tremendously happy. She is a big sister, and she is a pretty good one! She will fetch diapers for me, or grab the phone if my hands are full. If I need to get up to get something, she sits down in front of Amanda and feeds her for me. She is very protective of her sisters.

Her speech; which has always been much delayed, is improving daily too. Just little things, like 5 word sentences where I can understand every word! We work hard on speech with her; she struggles so hard sometimes to make her needs known. Everything is in small steps, and in its own time, she can recite words from flash cards like a pro, it is stringing them together that is the challenge. As always, her behavior can get in her way, it hinders her progress in many areas, that stubborness that all my kids have is tenfold in her! If she just got out of her own way, she would do so much better!

Miss Kara, goodness, the Tasmanian devil has nothing on our dear little Kara. She can tear a room apart faster than you can blink! She is learning some self-control, but she simply does not listen when we tell her no. She has taken to falling on the floor and fake crying to show her distress when we tell her to stop, usually we get up and walk her out of whatever room she is tearing apart. Because of her destructiveness, she is no longer allowed in the kitchen unless we are in there; she adores throwing silverware in the garbage, and is quite clever in getting forbidden foods off the counters, using tongs to reach things we put out of her reach, she has learned that chairs scraping along the floor make a lot of noise, so she stopped trying that one! Her tantrums when we tell her no are very dramatic and often comical. I have learned to completely ignore her; she eventually gets up and moves on to the next thing.

Kara is completely non-verbal, she used to say a few words, but they slipped away somewhere, you can tell her receptive language is good, but her expressive is all but non-existent. Consequently; we are ordering a communication device for her. Kara refuses to use most sign as well, so we need to help her another way. I am worried about her breaking the poor thing, she throws everything, even after two years it remains her first impulse. Cups, bowls, plates, toys, remotes, clothing, anything she gets her hands on. What are really distressing are the cups full of liquid flying across the room. A verbal reprimand usually stops her in mid throw, but she is a challenge. Constant vigilance, all three girls require it, but they do not all go in the same direction at once!

I absolutely adore her, she is such a rascal, and her waddling walk is just too precious. It is obvious to me that she needs orthotics again though, so off to the orthopedic doc we go, he will need to reassess her feet and make a recommendation for her. Kara has learned to spin in circles, it is a new thing for her and she and Meghan play at spinning around and around, but Meghan can do it for several minutes and Kara is dizzy and stumbling after a few turns! She makes me laugh when she sits down and rubs her eyes and chuckles afterwards. Kara loves to laugh, she finds so many things amusing, and is a huge fan of slapstick humor. Watch someone get smacked, stub their toe, get hit over the head? She is guffawing. Even when it is not funny...she would have loved the old Tom and Jerry cartoons. Maybe we can find some for her! Kara will be 5 next month, she seems more like an 18 month old, but considering that she tested at the 8 month level when we brought her home, I would say she has made tremendous progress!

Amanda is doing better and worse at the same time, rather like a 2 step forward 3 step back girl. We watch her make tremendous progress and then all of a sudden we are back where we started. It is perplexing for us, I am not certain how it affects her, it is hard to tell. Take feeding, our goal for her is two-fold, get her feeding herself, and help her learn to chew her food. There are times when she will handle textures, small chunks of food, or thicker foods, and others where she gags and chokes on all of it. Some days she will feed herself a few spoon fulls and others where she sticks her hands down her pants and refuses to pull them out. She also loves to throw things, an orphanage behavior I wish neither girl had. If I get up to grab a ringing phone, she will throw all her food down, splattering it all over the walls and floors. Before I sit down to feed her I get everything I need and place it next to us, saves time in the end.

Amanda's typical day begins with her squealing from her crib, some days I reach down to get her and she turns away, not ready to get up yet. She gets up and scoots over to the back door, wanting to go outside to play. She climbs on the rocking dog, crosses her legs over the head, drops her head and breathes deeply a few times. Then she will get off and scoot around the patio a bit. She does that every morning unless it is raining. At 9:00 sharp she wants her breakfast, she always knows when it is 9. I have folks asking us to go to appointments then, or coming for therapy and I tell them, disrupt breakfast and her whole day is shot. They never seem to believe me, but it is very true. She is routine oriented to a fault. I suppose it would be fine, except her sisters are not on her schedule and she needs to learn that she alone cannot dictate the entire households schedule, it is difficult for all of us sometimes. Juggling, it is what being a parent is all about, learning to juggle all of your children's needs! (And loving, disciplining, caring for, and nurturing them of course).

She prefers her own company and does not often seek out her sisters to play; she is still at the parallel play stage. Her favorite activity is swimming, she will stay in the pool for hours, she will throw toys in the pool and them throw them out, retrieve them and will do it over and over again. She does not like sharing it with her sisters. They all go into the pool after morning school; Amanda will sit in it through lunch if I let her, which is how much she enjoys it.

Afternoons the pool is drained and the girls play with dolls or the cats. There are countless days when I look out and see Amanda in the middle of the grass surrounded by our cats and numerous kittens. She likes the cats, but often hurts them because she does not know how to pick them up correctly, instead she grabs they fur and squeezes, and they get upset and bite her. We have shown her hundreds of times how to pick up the kittens; maybe being bit will show her better? It profoundly hurts her when her kitties scratch or bite her, it does not seem like she gets she is the cause of their distress? I suppose it will take time for her to understand. You would think the cats would avoid her, but after a few days, they are right back to her side!

Been reading a lot about dual diagnosis, Down syndrome is one thing, we were prepared for the girls special needs where that is concerned, but adding autism to the mix has been difficult. My style of mothering is to hold, cuddle and bond and she seldom allows that type of interaction, she will rarely look me in the eyes, she rarely smiles in response to a smile, at times sometimes it hurts my feelings to be snubbed repeatedly. Though she does squeal with delight when we pick her up and smiles when we kiss her. There are days when she wants to be in my lap all day, and I do try to hold her as long as possible then. She is an enigma.

I know we will eventually understand her better; she is such a sweet even tempered little girl. Rarely throws tantrums, though she has been known to do them at times. She and Kara are polar opposites, Meghan is someone between them in temperament, ah, so much for all kids with Down syndrome being alike!

Wednesday, September 9, 2009

Recovering slowly

We are on the mend from the flu here, I am happily sitting down without and intense need to fall asleep. From our symptoms, it seems we have had the Swine Flu, though it was not confirmed by a doctor. Only very ill people are being tested for the virus, and the tests are inconclusive. We have matched at least 2/3 of the symptoms, I think we can say, yep, Swine Flu. Apparently the only flu in town is the Swim Flu so...hope this means the vaccine discussion is a mute point for us. I will tell folks that our first symptoms were intense fatigue and high fevers. The fatigue reminded me of that which I had following chemotherapy, I literally could not stay awake.

It was and still is a bad flu for me, the coughing from the chest congestion being worse because I already have asthma, I am also not able to eat much, but believe me, I need to weigh less, unlike Amanda, who was the third person to get sick, she lost a couple of pounds form sleeping instead of eating. Amanda is almost back to her old self. Meghan was the 4th person to catch it, she is still tired and coughing, big dark rings under her eyes, but she was outside playing today and does not cough at night any longer. Tom is feeling much better, but still coughing himself, says he feels almost back to normal. I was next in line to get it, I tried not to, but kids are not good at covering the faces when they sneeze, I was doomed! Kara seems to have the diarrhea part of the flu, also fever and runny nose. She is doing better today too. Been a rough couple of weeks here.

Julia says she never caught this, but was feverish, had extreme exhaustion and the chills before anyone else was ill so...

Prayers are very welcome.

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