Shoe designed for people with special needs!

This is a great article on a new shoe designed by Nike for those who have difficulty putting on regular shoes. Could be really helpful to a lot of people!





http://www.kptv.com/story/29582869/nike-creates-shoe-specifically-designed-for-people-with-disabilities?autostart=true

Steps

Mr Sweetness and Light took his very first steps with two legs! He got to try it out for about 15 to 20 minutes. This first leg is a rough one so changes can be made to suit his uniqueness.  More work will be done on it since it couldn't be adjusted any further for him. Our prosthetist said to expect more adjustments as he learns to walk because his gait and stance will change over time. At his next appointment, the leg will get fine-tuned even more and then he will meet with the physical therapist who will help learn to use it.





I cannot begin to describe the joy I felt watching his first few steps. Since I didn't have any of my children as infants, this is the first 'first step' experience I've had with any of my kids. I wasn't sure whether to make a fuss--after all he is 15 years old and boys that age don't really want that kind of fussing since they're 'grown up now!'

Firsts...

When I began the journey to adopt my children there were many things I never imagined: Telling nine year old Miracle Man to come down from 25 feet up a fir tree the day before major surgery; Explaining to 14 year old Mr. Sweetness and Light why he shouldn't climb on top of our roof at 10 p.m. to look at the stars (never mind how he got himself up there in the first place!); Learning about hair--how MM didn't like it--never mind that he was using the clippers to shave the dreaded stuff off the tops of his arms; Spending 1 1/2 hours curling Miss Sunshine's hair for photo day.

The past year has been full of all sorts of firsts: Mr. Sweetness and Light played sports for the first time: baseball, soccer, swimming. His first P.E. class. First trip to the beach. First time going to church. Miracle Man graduated from middle school and started high school. (And boy have I gotten short! Every time I turn around I'm getting shorter!) He drummed up his first job--on his own, might I add. I can't believe what a man he has started to become! He's showing initiative, working hard, growing into himself. Miss Sunshine sang in choir and joined track team. She's set her sails and looks toward the stars.

Last month,  we attended a clinic for challenged athletes. SL learned how he could swim. Learning how he can as opposed to how he can not. That mindset became so important during his adoption. It is a good life lesson. Figure out how you can do something rather than looking for all the ways and reasons you can't. Over my life I have watched so many people do the latter rather than the former.

Tomorrow SL will get fitted with a rough prosthetic leg and begin the journey toward walking on two legs--something he could only dream of 18 months ago. The road ahead won't necessarily be easy. He will have to use muscles in ways he has never done before. Just the motion of walking will be so alien for him. There will be socks and liners and medications none of us has experience with yet. Eventually, there will be an operation--but the folks at our hospital want to get him on the road to walking before that occurs because it will give him a positive mindset when things are hard and not working just right. He will get to know what it is to walk before any other changes get made. What freedom he will experience by not having to have a crutch to lug around all the time! He dreams of new firsts now:  riding a bicycle, driving, running in track. I've cautioned him that this first leg is a walking leg, not a running leg. "Why can't I have a running let?! I don't want a walking leg! I want to run! I hate walking legs!" How does one answer that? I did give an answer. It feels so much like holding him back--something I never want to do. We have to apply for a running leg. Prosthetics aren't cheap. A first prosthetic runs about $9,000 and subsequent ones could go up to $50,000. I will figure out how we can get him his running leg.

New Page!

Hi everyone! Just wanted to give you a heads up about the newest page here. There can be a lot of hidden costs after you get home with your child as well as the need to find resources you weren't expecting. The newest page is called adaptive resources and will be a work in progress covering all that stuff you'll need after you're home with your bundle of joy! Check back often to see what's new!

Beautiful Hong Kong!

We slurped up our breakfast and checked and double checked that everything had gotten packed and nothing left behind. We felt rather sad to leave the Louidon. It was so special there. If we get the opportunity to visit Guangzhou again we will certainly stay there.






Some of our last sights in Guangzhou included Ikea--who knew?!

And folks exercising in one of the parks. I really liked how much people did in the parks in China. It seemed like the parks were in constant use and for activities we wouldn't do in the U.S. --like the folks practicing their dance moves and a choir practice.







We took an early morning train in hopes of visiting more places in Hong Kong after arrival there.

Our guide got us into the correct queue for the train and away we went. I'm not sure whether the train from Guangzhou to Hong Kong was a bullet train--I kind of think it was but it sure didn't seem like it went all that fast (not that shooting pictures out the window wasn't challenging because it was and I did take a lot of them just to make sure I got something memorable and useful from the trip.

These beautiful art works were in a magazine in the seat pocket on the train. All I could think was, "wow!" Wish I knew where they were exhibited, might have been nice to have seen them in person.







As we left Guangzhou, high rise buildings gave way to smaller buildings, houses, apartments. Dwellings ranged from ultra nice and obvious luxury to humble, tarp and plywood affairs braced against the elements.












I would love to have BBQ at this place...could I afford it though?! I'm thinking, not. What a gorgeous building though. I wonder what it is besides serving BBQ?

Maybe some koi from this fish farm would be a better idea.












Ponds, streams and gardens punctuated the landscape. Green foliage everywhere. During the trip, ladies made their way along the corridors with carts of food. We didn't eat any, having brought along our own snacks.

Hong Kong

We arrived in Hong Kong early in the afternoon.







We ate lunch in the train station where we were cautioned not to feed the birds.










Finding a taxi to take us to our apartment proved a bit more challenging than expected as did navigating the MTR station in Hung Hom. We got turned around a little bit but eventually emerged in the right place and got a driver to take us where we needed to go.

It felt so good to get to the Bridge Apartments out in Tsuen Wan that we almost didn't want to leave our unit. Indeed, we did stay overlong there and ended up not seeing as much as I'd wanted us to on our first day there. This is a night shot of the lobby.

View from our room looking toward Tsuen Wan.

The Bay Bridge with harbor traffic. Around the left of the bridge the harbor runs past Lantau Island to the sea. We have a new bridge at home called the Tumwater which reminds me of the bridges in China every time I see it.

We forged on and took the apartment shuttle to a shopping mall where we connected with a bus that took us to the Hung Hom MTR station where we could connect with a train into Kowloon. The shuttle/bus stop is the small structure in the lower right portion of the picture. Once in Kowloon, things were pretty easy to navigate.






We hit upon going to see the lazar light show which lights the buildings and sky three times a week. For the best viewing you'll want to go to the Walk of Fame. When you get off the MTR, and go up to street level, you will likely see this street sign with a large hotel behind it and the building also. Know that you are close to where you want to be!

Had we arrived in the area earlier in the day, we found there was an art museum we could have toured. Mr. Sweetness and Light loves art so that would have been really good for him to see. The art museum is the building beyond the one with all of the colorful lights.

We walked along the Walk of Fame past the clock tower and the Star Ferry terminal. From what I understand, a lot of people get married in front of the clock tower, hence the wedding cake topper! People were getting their pictures taken in front of it and I had to wait to snap this shot until they all finished.

What do you suppose we found after passing the Star Ferry terminal? McDonald's! All right, we eat at Micky D's. Interesting affair. You could order upstairs on the street and take your food into the restaurant downstairs or to go. You could also order downstairs in the largest McDonald's restaurant I think I have ever been in. It had a large lounge type area with comfy chairs and a large table, another area with lots of tables in front of the counter, another beyond that and another beyond that one. Must get incredibly busy. We learned that the offerings aren't the same and also learned to check out the individual restaurant deals, which again, weren't the same as at home. Silly me, don't know why I would have thought that!





Good thing we arrived early for the lazer light show! It got very crowded! What a show too! My pictures just don't do it justice!

Afterward, we wound our way back to the MTR and whizzed back to Hung Hom to catch the bus back to the shopping mall where we would catch the last shuttle back to the apartment. It was a very, very long walk through the mall and we had to get help from some of the locals to find the shuttle stop. Thanks to them, we got where we needed to go. The walk back to the apartment would have been even longer!


Next day, we awoke early to head into town. I wanted to see the Lantau Buddha and ride the cog rail up to the Peak again. It was not to be. Not this trip. Sigh. We retraced our steps from the night before to Kowloon and the underground McDonald's. We ate a hurried breakfast then sprinted over to the Star Ferry.
The Star Ferry was founded by a Hong Kong resident of Indian origin. Depending on the source of information, it variously gets its name from the founder's Zorastrian religion which has a star as one of its symbols, the names of the boats which all had 'star' in their names, or the inspiration of Alfred  Lord Tennyson's poem "Crossing the Bar." Whatever the true origin of the name, most agree that the Star Ferry routes are among the attractions not to be missed!





As we raced to catch the MTR to Lantau Island, we passed this Apple store--can you see the crowds of people?! I think Apple had just released a new iPhone model and everyone was trying to get their hands on one!









Why had we done this? To see the most Chinese venue in all creation......drum roll, please.....

Hong Kong Disney

Yeah, I know some might disapprove. But kids. Way cheaper than California or Florida--so if your children are old enough and you're on the fence about it, do it!  And there was no California Adventure park torture for mom-who-can't-turn-around-twice-without-nausea me. The HK Disney also is much smaller and at least on the day that we went, much less crowded. 

Only a couple of the rides had longish lines---the longest one being the Autotopia. Mr. Sweetness and Light rode the Grizzly Gulch roller coaster five times in a row! Talk about a glowing face!That alone made it all worth while. He had never ridden a roller coaster. 

We didn't spend a lot of time looking at trinkets there, although it would have been nice to have gotten something. The souvenirs weren't inexpensive nor was the food. We limited ourselves to having Mickey Mouse-shaped waffles. I think they were something like $5USD each!








As the night wound down, we found ourselves staying to watch the fireworks shot from the top of the princess's castle.










Too soon, we had to make the return trip to our lodgings. We wished so very much that we could have stayed there longer.

Sleepless Mama calls out to the universe

Recently, I have dwelled on the children I was not able to bring home. Over this past weekend, I checked on the other young men I had been considering when I started the process to adopt my son over a year and a half ago; Four boys still wait. One ages out next month. I don't want that young man's future to be one of marginalization and that feeling will not let me sleep. I cannot believe no one will scoop him up and give him all that he needs in life! Can you make room for one more child in your life? He's healthy, does all right in school, is an athlete, plays well with the other children and has a big heart. Act now. Contact me for more details and contact an adoption agency. He doesn't have time to wait.

This article appeared on one of the boards I subscribe to. It was the first thing I read this morning. Do you think it was chance that it fell into my hands to read on a night when my heart burns so much to find a young man a family that I cannot sleep? It is a long article. My heart broke all over again.

http://aeon.co/magazine/world-views/whats-it-like-to-be-disabled-in-china/

Little bits of this and that

We received article 5 approval this week. Travel has been pushed back to December 26th with a potential consular appointment on December 30th, the last day we can possibly go. It is both a relief that the date has been pushed back and a worry since there won't be any budget room. Fundraising from all sources has jumped to nearly $2,000 for which we are extremely grateful and thankful. I'll get to work a regular work schedule for the next two weeks--weather permitting.

Got to wondering about slacks, socks, shoes, and gloves/mittens for our boy. Are there companies which make apparel for children who have limb and digital differences?

Hope you all rest easy this night in peace and comfort, and may that peace and comfort be extended to those without.

Equal isn't always equal

We in the US can shout EOOE! and ADA! all we want. There will still be those who don't embrace this and those discomfited by it and still those who remain ignorant about people with differences. I encounter this with respect to my children--especially Miracle Man. Although, as time has gone by, and he has had more surgeries, that has lessened. Especially after the last surgery where he had rhinoplasty and lip repair.

In my work life, I have to over come ignorance and prejudice on behalf of the people I serve. Sometimes it is with respect to getting volunteer positions to ready someone for real-world work. Other times it is to enable a client to receive the medical care they need. I have encountered this several times over the last few weeks. The most recent was in getting medical help for a very challenged person. The medical professional providing service thought she knew everything about my client's needs because she had a son with similar needs. This person did not see my client as an individual and would not accommodate my client's needs--going against protocols and potentially against ADA requirements. She also dismissed the diagnoses of other medical professionals with a wave of the hand: she knew everything and no one else was qualified to perform the services she did. Other medical professionals had been able to make these accommodations and follow protocols. They were not unreasonable.

Here is an article from USA Today about one family's fight to get medical care for their daughter:

http://www.usatoday.com/story/news/nation/2013/10/05/disabled-transplant-amelia-rivera/2917989/

Celebration of light, birth culture loss and growing our family culture

As I watched a family preparing themselves for a Diwali celebration at the beginning of the week, I pondered the loss of birth culture for my children. I thought about how their birth families might be celebrating and the traditions each may have for this holiday. For those not familiar with Diwali, it is the Hindu celebration of light and falls somewhere between the end of October to the first couple weeks in November. Rather than a single day, it is five days--each with its own theme. Family celebrations include special food, prayers, visiting family members, putting on new clothes, and chalk drawings.

This family  included all their members and friends in the festivities, a number of which were born with intellectual and physical challenges. My thoughts turned to my sons. How sad Miracle Man's family hasn't gotten to hear his laughter, listen to his stories, and know the pull of the charisma he exudes. Or even know that he lived and now thrives. I wish they could see him now and see the man he soon will become. Do they ever wonder about him? What is their life like now? What was it like when he was born? Miracle Man remembers enjoying fireworks set off for Diwali and the special time it was for him in India. Would he have had that in his birth family? What would their celebration have been like? And a bigger question: would they have celebrated Diwali? His family might not have been Hindu.

Miss Sunshine surely would have been putting on beautiful sari's or salwar kameez then applying bindis and henna drawings. I imagine her preparing for the holiday with her family and the joyous feeling they may have from visiting with all of their members and friends. I know her birth mother thinks of her even as she goes about her life now.

HH has lived in his birth culture all his years to date. In a little over a month he will either go from all he has known to a world so different he cannot imagine or he will stay in his birth culture but face a life of pain and shame--perhaps not knowing when he will eat again or where his head will rest after a day's toil.  Do his birth parents wonder about him? What would his life have been like if he could have remained with them? What would they celebrate in their family?

I can only give my children small pieces of their birth culture--from the outside. I can give the pieces of my culture which they may or may not keep going forward in their lives. In that way, we graft to one another to grow our family culture and make it our own. We celebrate Diwali, go to India Day celebrations, and eat Indian food. We have in the past gone to Asia Fest, celebrated Chinese New Year, and my children already home love Chinese food. Next year, these will all take on new meaning for us as we work to assimilate HH into our family and bring more of his culture into it.

It's official, we're live at Reece's Rainbow!

Do you know about Reece's Rainbow? It is an advocacy group for children with Down syndrome and other special needs. The group supports families whose children have Down syndrome and assists families in raising funds to adopt children with special needs.

HH qualifies both because he has missing digits and part of one of his legs and because he will age out soon. Donations to our personal Paypal account won't be tax deductible; However, those made via our Reece's Rainbow Family Sponsor Program donation box will be tax deductible. We will be holding some giveaways very soon. In addition to the giveaways, you can help by sharing on Facebook, your blog, emailing, tweeting, or even leaving a comment. If you feel moved to make a donation, know that Reese's Rainbow accepts checks as well as donations via Paypal. Paypal fees mean that not all of a donation goes to the intended family whereas a check completely goes to the family.

You can read our Family Sponsor Program page and learn more about Reece's Rainbow at the following link:

http://reecesrainbow.org/sponsortomaszewski

You'll find the donation box in the sign bar.

Keep checking back for news about the giveaway!

Three articles on church support of international adoption families

Christianity Today article on how churches can support adoptive parents

These are really good--especially the last one. If you're not Christian, please don't let it deter you from reading the articles; they can be applied to your own center of faith too.

Finish line in sight!

Almost done with the paperwork my social worker needs to complete his report and get the homestudy done. We only have until next week. I'm almost done with the dossier paper work too. Just a couple items and having a CPA go over the financials and give a statement of what my earnings are and the prospects for earning the same thing next year. Anybody know a CPA they could recommend? After that's done, I plan to hand-carry the docs down to our state capital to get the apostiles to expedite that part of the process. I hope there is a way I can expedite the I-800. We're really HH's last hope for a family!

Miracle Man surgery switcharoo

For the last couple years we've been working toward a bone graft for Miracle Man's jaw and had planned on that surgery for this summer; Unfortunately, his teeth have to move more and this is taking longer. His team has decided to go ahead with some lip repair and rhinoplasty. The doctors will move part of his nose down toward it's final position but cautioned that it will need to be moved more during the next surgery. So we're looking at surgery toward the end of August. Too bad it will be so close to the start of school! Talk about thrilled! Miracle Man can't wait to look more like his peers! So important at his age. His only concern was whether he would be able to play soccer and happily learned he would be able to start with his team.

1/23/2013 Convergences

This week I am dealing with convergences. What kind of convergences you ask? Everything happening at once. In November/December several areas of life conspired to have major amounts of paperwork due all at the same time. Now, household repairs. Not the ones I had been planning to do or knew I needed to do. No siree! In the past week two sinks, one toilet, the front gate, and refrigerator (just over a year old mind you!) have broken, needed repairs or required more repairs. So I've repaired the toilet, taken apart sink one and am poised to install the new hardware for it, began installation of a grab bar so HH can get in and out of the tub without problems, new hardware for the hand towel ring, TP roller, and will be ordering a double towel bar so all the kids will have their own place to hang their towels. The old towel bars, et al never stayed up. There must be some secret to tightening those teeny screws that are supposed to hold them on the brackets. Not sure what it is but I missed that lesson. In all of this, I realized I probably will need to install railings for the front and back steps for HH...there are only two steps up each but it likely will be something we'll need to do.

5/22/2011 Little "R" Update

"R" now walks around the playground, the agency reports. She likes her AFOs.  AFOs? I thought she was supposed to be wearing HKAFOs. Does this mean the casting last year improved her ability to walk that much? Is it just that that's what they have for her? They've scheduled surgery for her to improve continence when just a couple months ago they said they didn't have the resources to keep cathing her, what's up with that?! Glad to hear these things. They still haven't answered my questions from last fall. Grrrr. Maybe they just don't know on a lot of them.

Homestudy bound

April 20, 2011 Looks like we'll be doing the homestudy for little "R" next week. The house needs work but is in the best shape it's been for any of the kids' homestudies. We've received new photos and an update. I've also learned we may be eligible for an additional grant for the final agency fee. That still leaves the other agency fees, dossier preparation fees, I-800A, visa, medicals and several other expenses to get covered. I'm looking into more grants and also have taken a lot of good advise on fundraising.  I hope to be able to do a pay pal button on the blog with the funds going to the agency.  Have to see if it can be set up that way.

The kids are wondering if "R" will be able to ride a bike or scooter. I've told them it might have to be a special adaptive machine.  "R" fell, cut her chin open, and had to have stiches.  She didn't tell anybody about it and bled a lot.  They think she's got a high pain tolerance so I'm preparing for the possibility that she may have some sensory processing issues just in case.

DD won a game at school and declared she did so for her new little sister. The kids were fantastic helping in the yard today.  The front yard looks almost the way I want it to for now. We'll move work indoors probably tomorrow as I have a feeling our spring is over for a week or two and we're back into cold and wet.