Wednesday, May 19, 2010

Link to Exceptional Family TV

Hi all,

I found this information on FB today.

eFamilyTV will focus on stories of exceptional families around the country and world.

Topics will focus on the realities of raising children with special needs.

http://www.exceptionalfamilytv.com/Welcome!

www.exceptionalfamilytv.com

They have a FB page too for those of you on Facebook.

Blessings:)
Amy

Is it really almost summer?

Hi all,

Is it really almost summer???? I don't know about all of you, but time is flying by for us! The end of the school year is FULL of activities.

I am looking forward to my doctor's appt. next week for my broken ankle. It's been three weeks since my surgery and hopefully, next week I'll be able (fingers crossed) to get a walking cast on. That would make things a lot easier.

We've been so lucky and grateful for everyone's help while I'm laid up. We found a wonderful young man who works at Nick's high school (thanks to a wonderful professional at Nick's school) who is providing respite for Nick in the mornings to get him and Charger up, fed, dressed and ready for school. It's been working out great and he's been bringing them home from school too.

As I've talked about before in the blog, Nick has played baseball for over 10 years for the Greater Toledo Challenger Little League (www.gtcll.com) and he loves it. He decided that this year, he wants to help out coaching or with whatever else they need him for, but definitely wants to still be involved. He said he enjoys watching the kids play and loves it but wants to start coaching if he can. So, that's the plan. Then we got a call from the Miracle League (www.mlnwo.org) and Nick was asked to play. This is another league, newer to our area than GTCLL, but has teams in cities nationally. (www.miracleleague.com). It's also a league for kids with disabilities. Nick decided to play, to try it, as something new and still be involved coaching and helping out with GTCLL as well. We know other kids who play on both leagues, which anyone can do. So, Nick had his first game for Miracle League this past Sunday and had a lot of fun. He plays for the "Bulls" team. The teams were small, there were only four kids on Nick's team, and we're not sure if they'll have more. Anyhow, he hit the ball all the way out to the fence and it hit the fence. Nick always surprises people with his arm, how strong it is and how he can hit. He loves that! We are looking forward to both leagues this year. It will be busy, but we know Nick loves it!

Isabella is looking forward to her dance recital this coming Saturday. She will be performing her routines for Jazz, Tap, and Hip Hop. The theme is "Going Green" and they are doing a "stomp-like" number for one routine. The kids had a big pizza party this past Saturday at the dance studio to make all of the decorations for the recital, which I thought was a GREAT idea. It gives them "ownership" over it, they used recycled materials, and they had a blast! We can't wait to see her in her recital on Saturday! This will be her 5th year taking dance. (plus a few more years if you count the little classes she took at the YMCA as a toddler/pre-schooler:) ) Bella is also taking Nick's service dog, Charger, in to her class this Thursday for a book report presentation. She read the book "Working Dogs" and so Charger will be perfect for her presentation. She is excited and has been practicing with him a lot. She'll be finishing up 4th grade in a few weeks. Time just flies! Next year will be here last year at elementary school:(

Nick plans to work at The Ability Center of Greater Toledo as a volunteer staff person for Camp Cricket like he did last summer. (www.atbilitycenter.org) He also plans to attend camp with the Ability Center at Camp Storer again. Isabella plans to attend Camp Cricket at The Ability Center for two weeks as well, during which Nick will be a counselor. Camp Cricket is a day camp for kids with and without disabilities and they do a lot of fun activities at the center and out in the community. Nick's attended since he was six (minus a few summers when we were in Canada at Ability Camp, www.abilitycamp.com for 6 weeks for therapy for Nick, etc.) and Isabella, who does not have a disability, has attended since she was six as well and loves it. Isabella is also attending two three-day camps at the Toledo Area Humane Society (www.toledohumanesociety.com) and she has done this for the past couple of summers and loves it! We also hope the kids get some down time this summer to sleep in, hang out, and just enjoy their summer.

It's hard to believe that Nick will be a senior next year and we are
going to be getting senior pictures taken and touring college campuses this summer. It doesn't seem real yet because as a Mom, I still remember him as a little boy, but also because it's taken a lot of work on his part to get to this point and sometimes we wondered how things would turn out. It's one thing to know he's capable and smart enough to go to college and say that and talk about it. It's another thing to get to this point and then realize all of the things that he'll need to have in place (assistance, etc.) to allow him to succeed. It can be done, is done, for sure. We just haven't done it before. It's all new to us, like most parents, with the added layer of "disability stuff, services" we need to put into place. It's yet another transition. Transitions are something often talked about, written about in the disability community. Transition from early intervention services (birth to three) to preschool, then to elementary school, jr. high and high school, to work and/or college. Each of these steps is a big step for anyone. Add the disability on and it then involves a whole new "system" and group of professionals to work with, new services, new "plans" (IFSP, IEP, IPE, etc.), so you have to learn a whole new language and culture of services. I'll write more about transitions another time. The point it, here we are beginning one of the biggest transitions so far in Nick's life. We are facing it with a bit of fear of the unknown, but also a lot of excitement for Nick and his future. Like I said, it's just hard to believe we're HERE already!:)

So, I'll be keeping everyone updated. I always say, "it's all for the journey" and I wouldn't have it any other way.

Blessings:)
Amy

Friday, May 7, 2010

Happy Mother's Day

Hi all,

I want to say Happy Mother's Day to ALL the Mom's out there from my heart!

I was sent the most beautiful e-mail today from a friend. As I was reading it, I had tears streaming down my face, a lump in my throat, and a smile on my face all at the same time. When reading it, I felt it was being written "to me" and to people I know personally, as if the writer knew the exact experiences we've lived. I must share this beautiful e-mail with you.

Blessings:)
Amy

Here it is:

From: "Camden, Mandy"
To: "amyhyndman@buckeye-express.com"
Date: Today 8:18 AM
Subject: Happy Mother's Day!

Happy Mother’s Day

Thoughts of a Mom

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority.
We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk.



Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try. We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.



We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip. But we, sisters, we keep the faith always. We never stop believing.


Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.


But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.




By Maureen K. Higgins

Wednesday, May 5, 2010

Catching Up



















** These pictures are from 3/10 and 4/10. For some reason, the date on our camera if "off". These are before and after pics of Bella's Locks of Love haircut and the
Wood County Youth Olympics.
Hi everyone,

Well, it's been awhile since I have posted about what Team Hyndman has been up to. When I posted in March about the anger I was feeling at that time, I received a lot of supportive e-mails and I appreciate it. Then it seems like April flew by and now it's May!

Nick and Coach Boggs were asked to be the featured speakers for the Wood County Youth Olympics in March by the Wood County Prosecutor who puts on the event every year for 4th and 5th graders in Wood County Ohio. So, they gave a wonderful speech and did a great job! Isabella, who is in 4th grade, was able to participate and had a great time. Nick also had his wrestling banquet in March and received his first certificate/award for a sport for his own school and also received the Unsung Hero Award.

The kids had spring break in April. We were able to visit family from out of town and had a great time. The kids also had several sleep-overs with their cousins and friends on the days we were in town. The last Saturday of their break, we had just gotten back from out of town, and about midnight that night, I tripped over Charger, Nick's service dog (who is fine, thank goodness!) and that's when I broke my ankle, sprained my arm, etc. I ended up having surgery on my ankle 2 weeks ago and got a cast put on it last week. I will have the cast on for 6 weeks and can't put ANY weight on it for the 6 weeks at all, which is the challenging part! I have a knee-scooter (where you put your knee up on it) to get around the house, but it's tricky. So, I can't cook meals, drive, or anything like that. As hard as it is for me, we've had to accept meals and help from people, and I don't know how we would be doing if it weren't for everyone's support. As I said in a previous post, we are SO grateful! Thank you everyone! It helps to know I don't have to worry about a meal for my family. So, 5 more weeks to go...................

Also in April, Nick played a wheelchair football game for the Toledo Crash team through the Ability Center at the University of Toledo against the UT Rockets football team, who also played in wheelchairs. Nick did great, had a blast, and I guess he took a dive out of his chair for the ball a few times. I guess people were getting knocked out of chairs, etc. So, it was pretty hard-core. I didn't get to go because of my ankle, but Greg video-taped it for me and I saw the entire game on tape. It was amazing. I was thankful it wasn't as hard-core as Murderball or anything. By the way, if you haven't seen that movie, you should. It's not for small kids, it's got a lot of language and some sexual scenes, but it shows some hard-core wheelchair rugby athletes and is very cool! Anyhow, we were proud of Nick! (www.murderballmovie.com)

Currently, Nick is in the process of taking his ACTs. He received special accommodations due to his disability, per his IEP, of extra time and a scribe to take the test, so he has one more day of it and he should be done. We've been getting info. from colleges and this summer we plan to visit some campuses. Nick wants to stay local (UT, BG, Owens) but we're also going to check out Wright State in Dayton as we've heard it is a very wheelchair accessible campus and they have underground tunnels for wheelchairs in the winter, etc. (which is a big problem for students in chairs in college campuses in the snow and ice, etc.). It's hard to believe we'll be getting his senior pictures taken this summer and that he'll be a senior next year! He's still practicing driving and we're in the process of getting hooked up with RSC/BVR (Bureau of Vocational Rehabilitation-) to help Nick with transition issues, help with paying for his driving lessons. He had an initial appt. last week with the Bridges to Transition Program who is part of BVR, which works with Wood County Youth with disabilities like Nick, with transition from school to work (includes college) issues. (www.woodlane.us/bridges.php) (www.rsc.state.oh.us) Anyhow, it's all a little overwhelming but I'm glad there are these programs to help:)
Isabella got her haircut over spring break and donated 10 inches to Locks of Love (www.locksoflove.org) which is a great program! She saw a documentary on HBO about it and although she loved her long hair and it took her awhile to grow it, she wanted to do it and her hair is adorable. She said, "it's just hair!, it will grow back if I want it to!" She said she realized that some kids can't grow their hair due to cancer or other conditions, so I thought it was great she realized this and decided to do this on her own. She's so sweet:)

Isabella is getting ready for her dance recital later this month, so she's been dancing three or four days a week and getting costumes and decorations for the recital done. I like the fact that this year, the students are having a big pizza party on a Saturday and they are making the decorations for the recital, and the theme is "going green", so they are taking some "ownership" over it. I like it and she is excited too! Isabella won a poster contest for Arbor Day, she was the only 4th grader from her school to win and got to take part in a ceremony for it last Friday with other winners and her poster is in the Perrysburg library this week and next. Her picture was in the Perrysburg Messenger Journal for it today as well. Cool! Go Bella!

I have been really struggling with my broken ankle and not being able to get around and take care of my home and family. I have to say, this has taught me patience and I've been even more thoughtful about what it is like for Nick. I've always thought about how Nick feels to struggle with his CP when his body can't or won't do what he wants it to, when to get out of bed in the morning and do anything physically is a struggle, and how he has to work so much harder to do little things we take for granted. So, when I think of that, I feel ashamed that I am feeling even a bit sorry for myself! I think, this is Nick's lifetime experience, and mine doesn't even compare and it's only for 6 weeks! It definitely puts things into perspective for me, having a son with a physical disability. How can I complain for long when I know his reality? I can't! So, although I struggle to keep my attitude in check, I am trying hard to just be grateful that this is a temporary situation, not a lifetime like Nick's disability. I am trying to accept help and it is teaching me patience and humility, which is not a bad thing. I have a good perspective when I look at Nick. I'm sure I'll continue to feel frustrated just because I am used to being able to do things I have to put on hold, it's like feeling like the world is going 100 miles and hour and I'm just sitting here, but I know what I need to do to keep my attitude in check! I can't wait to get back to work at Hospice. I'm really enjoying my job there and they've been so supportive and wonderful with my ankle, bringing me meals, etc. as well as my other family and friends. I'll say it again, THANK YOU everyone!

That is the latest news for Team Hyndman!
Blessings:)
Amy

Woodlane had a new Blog

Hi everyone,

Woodlane (in Wood County, Ohio-The Wood County Board of DD) has a new blog which I included in our links section. Their blog is http://woodlaneworks.blogspot.com/. Check out the latest news from Woodlane!

Blessings:)
Amy