Fun Gifts

In my family, for the most part, we know what we will be receiving for Christmas. It's just easier that way. Everyone gets what they want. No one wastes their money. We don't have to feign loving gifts that we just don't dig and then figure out what to do with them. And we don't have to fight the after Christmas traffic to return unwanted or unneeded gifts. We like it this way. Now, admittedly it takes away the element of surprise for the giver and the receiver but we have learned through the years that, eh, that's a small price to pay. This year, however, I got a fun little surprise. But first I must give a little back story. . .

A couple weeks ago I had another "what has happened to my life" moment. My cousin has opened a new boutique. She is a fashionista of sorts. Very hip and stylish and wears designers I only read about. She recently opened her own boutique, called Max and Prissy. Needing some fresh air and desperate to get out of the house I decided to go check out her new store. There was a time when I would not leave the house without at least applying a little lip gloss and mascara but not anymore. I went up to visit my cousin's store in all my ragged glory - no makeup, hair disheveled, with all the boys - Timothy had dried blood running down his nose from banging it on the bed frame earlier and Wil had dried up yogurt on his face because he has an everlovinfit if I try to wipe it off and that day it just wasn't in me. And Luke was with me too, filthy cowboy boots and all. So here I go traipsing into this cool boutique with its hip sofa's, chair's and clothing displays. There is my cousin - looking all cutting edge along with her manager, also looking very cute and stylish. Now, I try to maintain some level of style but really I felt pretty darn UNHIP! And old. And wrinkly. And outdated. And boring.

So we descended on her store and I noted how very out of touch with up to date fashion I have become. I tried on a couple of cute pieces including a darling coat that I could not justify purchasing. Not only was it not within our budget but it wasn't practical for this mom of three small boys who just doesn't get out that much. I mean really, where would I wear such a cool, tweed, knee length coat? But it's fun to look right? So I replaced the clothes, peeled Luke off the floor where he had found a place to color, and loaded them back in my oh-so-cool minivan and declared myself officially "last season" as we headed home.

But first I got a Starbucks. At least I can have a Starbucks. As we drove home I looked in the rear view mirror at the boys laughing at each other and decided that I would take all my drabness for the madness that is my life. I don't think that being a mom means you have to give up on all the great styles that are out there but for me they have surely been redefined.

And my fun, surprise gift? The cool, tweed, knee length coat. I just love it. It was a gift from my mom, dad, and aunt Susan. Thanks you guys for keeping me hip and happeinin'!

Here is a picture of the coat. It surely doesn't do it justice. But Leah, I knew you would ask. :)and for those of you who are really bored and want a good look at the detail here are a couple more pics.
So if you are ever traveling through Columbia on I-20 make sure you get off on Clemson and visit Max and Prissy.

An Inspiration

Karen Gaffney is an inspiration to many in the Down syndrome community but I think you will be inspired by her too. The Today Show did a great job of highlighting one of her latest accomplishments as well as communicating the importance of changing the way the medical community and society as a whole view people with Down syndrome.

Just for Fun

MyHeritage: Family tree - Genealogy - Celeb - Collage - Morph

MyHeritage: Celebrity Collage - Vintage photographs

MyHeritage: Family trees - Genealogy - Celebrities - Collage - Morph

The Diagnosis

A friend and educator from another state is updating a "new parents packet" that is given out in her community. When she was given this task she was surprised to see that there was not anything to address parents of special needs children or adopted children so she set about to change that. In addition to collecting resources to include she asked that I write a bit about our initial response to Wil's diagnosis. Because I get occasional feedback from new parents of children with Down syndrome I thought I would also share this here.

From the moment you get a positive on the home pregnancy test (and maybe before) your thoughts begin to swirl with the dreams and images of things “baby.” The sweet fragrance and soft skin, the cuddles, the coos, the clothes, the nursery. You start making your birth plan as your belly grows. You form all sorts of ideas about what your life will look like once baby is on the scene. If baby is not your first you begin preparing sibling/s for the changes that will come with baby in the family. It is an exciting time. It should be.

What you do not plan for is the phone call from your doctor asking you to come in to discuss some test results that are “a bit concerning,” or the uncomfortably quiet 20 week ultrasound followed by “we would like to do some follow-up testing,” or a premature birth that leads to a diagnosis that is a complete surprise to you. There are countless ways the news of a special needs child comes. For many it is on the heels of a very typical pregnancy and delivery, making it all the more shocking. It is never ever easy. It is not what you hoped for. No one I know prayed that the child they were carrying would come to them with medical or special needs. (though I must insert here that I now know many people that, having been blessed with such children, have gone on to pray that special needs kids would be placed in their home through adoption – amazing!)

Yet here you are. The day you have been planning for has arrived, though it is not at all what you thought it would be. There is medical jargon flying around, your baby has been whisked off to another room for testing, the air feels thick around you. You hear the sounds of laughter and joy in the rooms around you but there are no congratulations being offered in your room. Why does it feel more like a funeral than a birth? Every time a doctor comes in the room they bring more news. It may or may not clarify things for you.

For my husband and me the initial adjustment was to NICU. Our second son spent the first month of his life there. We did not get a diagnosis right away; that took some time. What we did know was that many of his numbers were not what they should be and those things needed to be investigated. As a result we could not hold him, our older son who was 2.5 at the time could not visit him, and we had to go home without our baby. That is when our new reality began. By the time our son left the hospital weeks later we had an official diagnosis of Trisomy 21 (Down syndrome) and Congenital Heart Failure as a result of three heart defects that would require open heart surgery at five months of age.




So we now live a reality that is different than we ever imagined. It is filled with challenges and struggles to be sure. It is also filled with a joy and fulfillment unlike anything we have known. It is funny how these things – pain and joy, struggle and fulfillment - intermingle, how they rub up against each other and remind us of what is really important. Our son with special needs, who is now the middle of three boys, is vibrant and determined. He is confident and stubborn. He gets what he wants by giving out hugs. He is motivated and trying hard to be independent even though his physical weaknesses limit him. He is precocious and clever. He is adored by his brothers. We already get glimpses of the long term impact they will have on each other. He fits perfectly into our family.
We are thankful our lives are not what we would have designed. Parenting is not about having perfect children. It is about providing the children that you do have with what they need. You will find that in the process of healing and grieving in the weeks and months following the birth of your child with special needs that a tenacious love for him/her creeps in. And that initial sinking feeling that you had after the diagnosis, that your life would never be the same? That feeling is not so heavy anymore. Actually you find that you embrace the fact that your life will never be the same again. Because you are learning it will be better!


*Thanks Holli for making a difference for families who don't start off in the typical manner!

At 68, Oldest Man (on record) with Down Syndrome Dies in England

By Katy Wheeler
The oldest man in the world with Down's syndrome has died aged 68. Doctors didn't expect Peter Davison to live past 14, but he went on to have a long, healthy life and was even awarded the title of "Oldest man with Down's syndrome living" by Guinness World Records. He died peacefully on December 12 surrounded by friends and family at Barnes Court Nursing Home in Wycliffe Road, High Barnes, Sunderland.

Today his devoted big brother Alf paid tribute to a man who "showed others what people with Down's syndrome could achieve". Alf, 76, said: "Everyone was really proud of Peter. When he was born handicapped children tended to be hidden away, but that was never the case with Peter. "My parents made sure he had his independence, and everyone knew him in the area. He was always smiling and was a proper little character."

Alf cared for Peter at the family home in Midmoor Road, Pallion, for 27 years after the death of their parents, Joe and Della. A keen knitter, rug-maker and puzzle-solver, Peter was always active and attended the Fulwell Training Centre for 40 years. One of Alf's proudest moments was in May when Peter, then aged 67, was recognised by Guinness as the oldest living man with Down's syndrome. He went on to extend the record by 215 days. In the last 12 months Peter's health had deteriorated as he developed dementia and Alf had to do everything for his brother – but he wouldn't have had it any other way. The former driver for the Little Sisters of the Poor said: "I wanted him to stay in the house he knew. He was very intelligent. His speech wasn't very good but I knew exactly what he meant."

On July 31 this year, Peter's health took a turn for the worse and he was admitted to hospital with a urinary blockage. This led to other complications and over the next few weeks he was in and out of temporary respite homes, as his condition was too severe for Alf to look after him. During this time he contracted MRSA and was unable to use his legs. Eventually he was admitted to Barnes Court Nursing Home where he spent h is final few weeks before he died from bronchial pneumonia and a heart attack. Brothers Joseph, 80, Alf and sister Maureen, 71, were by his side. Alf said: "We would visit him every day, so it was some comfort that we were there when he died. He didn't suffer." Neighbour Marie Wood also paid tribute to Peter and says he will be sadly missed in the area. She said: "He was a gorgeous man who was always friendly and smiling. He used to say that my seven-year-old son Jay was his best friend and Jay would make him cards and go round and watch TV with him. He will be a big miss in the neighbourhood." Alf said: "I just want to thank everybody who helped Peter on his last journey: Barnes Court, the Carers' Centre and Doctor Wilderman. All the neighbours have been marvellous as well."

Words and Games

Wil has many signs but only a few spoken words. He can say "Dadee", "Hi", "Ooww", "Mooo", and "Ba" which means bath. His newest word is "Uh oh" and I love his little voice when he says it.

video

I often have Wil and T hang out in my room in the morning while I am getting ready. I have learned the hard way that it is the only way to keep them out of trouble. They keep themselves busy while I shower and get ready for the day by emptying all bathroom drawers within reach and placing everything in the garden tub, pulling clothes out of drawers, rearranging the shoes in our closet, clearing our bedside tables, removing books from shelves and well, you get the picture. This morning when I got out of the shower I found everything as disastrous as usual with T sitting in the middle of it all but Wil was quiet. After a quick search I found him in the closet. Hiding! He was definitely hiding because when I rounded the corner he looked over and broke out into a big grin and giggled like he had really fooled me. He was also pretty pleased that he had found such a great perch on dad's shoe rack.

Special Needs

At one and the same time I seem to want to communicate to others that our lives, because of Wil's presence, are not any different than anyone elses and our lives are quite a bit different than everyone elses. We strive to advocate for Wil, to remind others that having Down syndrome simply gives him an extra 21st chromosome and that given time he will accomplish many of the things his peers will accomplish. And we do believe that he will. But our lives are different. When I look at how my friends that do not have kids with special needs spend their time or plan their outings I realize, yes our lives are different. I am not complaining. It is our reality and I wouldn't change it. I have been thinking about this reality the last few days though. While certainly not exhaustive, here are a few ways you know you have a child with special needs in your home:
1. Medical files are housed in three ring binders, not folders.

2. You have had to ditch one pediatrician in search of another that knows at least as much as you do about your child's medical needs.

3. Painting the table with yogurt is Occupational Therapy.

4. Climbing from floor to chair to table and tossing dishes, while discouraged, is Physical Therapy and secretly applauded.

5. You have had to hand your child over for at least one major surgical procedure with fear and trepidation.

6. Spitting is Speech Therapy. As is blowing repeatedly into a harmonica, whistle, or any other instrument - Ouy Vey!
7. The staff at the doctors office's know you by name.

8. You don't ever buy a toy without thinking about it's therapuetic value.

9. Insurance companies won't touch your child with a ten foot pole.

10. But that's okay because you find there are good programs out there to help out.

11. You know which ER's to avoid.

12. You have your doctor's private number.

13. Under no circumstances do you cancel an appointment with a specialist.

14. You live with a mild physical and emotional weariness.

15. You could take up part time work as a PT, OT, SLP (okay, not really, but it feels like it).

16. You can't believe your pride when the smallest of milestone's are met.

17. You can't believe your amazing good fortune that God brought this child into your family.

Boys, Gas, and Roughousing

Luke is really growing up. Some days I marvel at how mature he seems for a five year old. He asks such thoughtful questions. He is so helpful around the house. He is so insightful.

Other days, well, other days he seems very very five. And very very boy. Those are the days normally filled with bodily function sounds. This is a growing fascination with him much to my dismay. And there seems to be nothing I can do about this trend. The more I address how inappropriate it is the worse it gets. In fact yesterday I took L with me to run some errands, one of which involved going into the Kidney Foundation to turn over some paper work to donate our jeep. I had a nice brief talk with Luke before we entered the quiet pristine building about the nature of this office and what I hoped from him while we were inside. "Yes, ma'am." After, oohh, about five minutes Luke approaches the pleasant middle-aged woman at the reception desk and said, "watch this." He proceeds - before I can do anything to stop what is about to take place -to turn around, stick his bottom toward her desk and wiggle it while making the farting noise in his hand. That's right folks. Now, really, I was pretty speechless. Did that just happen in front of this obviously proper Southern Woman?! I am aghast but remain nonplussed, give a little "boys" chuckle and ask Luke to take my hand. I have never seen him do anything like this in the presence of perfect strangers. And after we had come to such a clear understanding just minutes before, noless!

Girls don't do these things do they???

Luke redeemed himself later while playing with Wil. This is where Luke's mature part comes in. And where he perplexes me a bit. The boy has a very low threshold for pain. And I do mean low. You don't want to be around when he gets a splinter for example, it is not a pretty scene and your eardrums are sure to be damaged. But Wil climbing all over him? He tolerates it. And it hurts. I can attest. Wil pulls, pokes, sticks fingers places where fingers shouldn't go, scratches, pushes, but Luke tolerates it all. He loves his brother and he tells him to be gentle and does his best to let him climb, poke, and push. Here is Luke "tolerating" Wil -now he is a little distracted by Curious George, that helps. :)

In My Own Time

With some frequency we are asked when Wil is going to walk. He will be three in March. Most kids with Down syndome are walking by 28 months or so; Wil is definitely considered a "late walker." Our answer, of course, is that we don't know. Admittedly I have days when I wish he were walking. Usually that desire springs from my own aching back than from hopes for him. It's not that I don't want him to walk - I do - it's just that I really do enjoy Wil exactly where he is and I enjoy watching him strive, explore, work, and play as he learns about the world around him.

There is news on this subject in the Down syndrome world. A study, here showing that babies that train on a treadmill walk 4-5 months before those that do not. I really like what Jennifer over at Pinwheels said about this. I can't really say it better myself.

And then there is Timothy. He is approaching 15 months and he is not walking. I know. Not that big of a deal. But am I ready for him to walk? Yep, yep I am. You see. He can walk, he just won't! He won't because Wil isn't and he does not do anything that Wil does not do. I know - sweet, right? Wil cruises furniture and walks behind a push toy and that is all T will do. T does it really well and is very stable - I have spotted him transferring and standing alone but he plops as soon as he knows he is seen. T, like his brother, will not walk while holding our hands. He does the noddle legs thing. Absolutely refuses to place weight on them. Although now that Wil is showing interest in standing alone and taking a random step we have our fingers crossed that T is taking notes.

Here they are on the playground. Wil went belly first down the slide, so T went belly first down the slide.
And here they are testing out the kiddie seesaw.

Timothy has also picked up all of Wil's sign language, which is great, though he is seemingly uninterested in trying out verbal communication. Unless it involves guttural squeals.

Timothy and Wil are great buddies. For now, Wil is being looked up to as big brother. He is being admired by Timothy. He is being mimicked throughout the day, it is really sweet. I know that one day that will stop. I know that one day Timothy will grow into his own skin, he will stop wanting to be like his big brother and Wil's place in the family may shift. One day it is going to be Wil trying to keep up with T, so for now I am going to enjoy the dynamic and the fact that I am getting some forced exercise with 28 lbs in each arm.

Our Christmas Tree Solution (warning, it's lame)

Okay, here it is.

What is it you ask? why it is a vase filled with cranberries crammed with woody branches. I made it as a centerpiece for a church function last night. It worked quite well. Is that the best you can come up with for your substitute tree you ask? Yes. Yes it is.


You see, I'm tired. I know. You are tired of hearing me say that I am tired. But it's true all the same. And here we are at the end of another round of rotavirus for Wil. It's been a bad week for him. And he ended with a bang today. He got it all out (do ya know what I mean? he cleared those bowels big time - it musta felt good!) this morning in our front room. I was upstairs changing Timothy's poopy diaper when Luke started screaming ( he is mildly dramatic) that Wil had stinky everywhere. Yup! James got him upstairs to the tub while I finished with T. I then finished up with Wil so James could get to work. I dashed downstairs to gather our things only to find poop everywhere. On the rug, on the sofa, on the books. All discovered as we were loading up to take Luke to pre-school. I couldn't just leave it because that is Wil's "therapy" room and his PT would be arriving shortly after we returned. Fun times. Here is Wil's pitiful self the past few days.


Luke has been keeping himself, and us, entertained by drawing on his socks and providing puppet shows.

And speaking of Luke. He does have some concerns about the "tree." "What if Santa doesn't know what it is?" * "Santa won't know exactly where to leave the presents." * "What if the cranberries go bad?" (good point - I will change those my bright young child) Of course, two days ago Luke came to me and exclaimed, " I don't think that Santa is real." "Oh no?" I say. "No, I just don't think there could be such a person, you know doing all that stuff in one night." "uh, huh, did you talk about that with someone?" I ask "No, I was just thinking it," he shrugged.

Ahhh. . . more good news just came by phone. Our beloved jeep that has been in and out of the shop for the last few weeks must go to the vehicular graveyard. sigh.

So back to the "tree" - yeah - that's the best I can do this year. Sorry kids. :)

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