updates 8/29/09

Nick and Isabella started school this past week. Nick is a Junior in High School and Bella is in fourth grade! They both got off to a great start. Nick has said he "loves" his humanities class and thinks it is going to be the "best class he's ever taken". Bella was so excited and loves her teacher. She loves to read and brought her reading book home to show us. She pointed out that it is now "800 pages" now that she is a fourth grader vs. "400 pages" like last year! I have a feeling it will be a great year!

The week before school started, Nick passed his test to get his temps. We are just waiting on the doctor to sign the paper needed due to Nick's disability and when she does, he'll officially have his temps. and be able to practice driving with us. Watch out! We had an evaluation last spring at UT Medical Center (OT, therapy dept.) and it was very extensive. It indicated he would only need one adaptation to drive, not needed but recommended, a ball on his steering wheel, but other than that, he did great.

The day before school started we had someone come to our house from the County Board of DD to do what is called an OEDI, which stands for Ohio Eligibility Determination Instrument, which is the assessment the do in the State of Ohio when an individual turns 16 to determine their eligibility for services from the County Board of Developmental Disabilities (www.odmrdd.state.oh.us/). We have Nick on a waiting list for supported living services for when he gets older and wants to live on his own and we receive family resources services, which is $1000 reimbursement annually for items for Nick. That is in our county, every county is different in the amount they offer and you get a percentage, so we get 50% reimbursement. We've used it to reimburse us for things like hearing aides, which are $5400 a pair and insurance does NOT cover (Nick is on his third pair), his Segway ($6700, not covered by insurance), things like that. It helps. Of course, there are SO MANY things individuals with disabilities and their families have expense-wise that insurance does not cover. I don't think most people realize this until they live it or know someone living it. So, my point is, every bit helps! Anyhow, the OEDI took a couple of hours (2 1/2) and the gentleman from Wood County DD was VERY nice, but Nick and I both felt a little "down" after he left. We both KNOW, are painfully aware, of Nick's challenges, but the assessment focuses on areas of "deficit" to show eligibility for these services, so it focuses on what a person "can't" do, which is the opposite of how we approach things. It focused on mobility, self-care, self-direction, capacity for independent living, learning, receptive/expressive language. Of course, it's just something that has to be done, but it is a bit of a downer! I had to also write letters to Nick's doctors, specialists, therapists, asking for diagnostic records and info. FUN!!!!!!!!!! Anyhow, that is done.

A bit of good news we found out after the OEDI visit, in our county, Nick IS elibible for Special Olympics! I was told when Nick was six and we lived in another county, and I was an employee at the time at the county board of mr/dd, that Nick was NOT eligible for Special Olympics because he did not have a cognitive delay. I asked several times, spoke to several people and got the same answer. So, all of these years, that is what we believed to be the case. Maybe it WAS, and perhaps something has changed, but I spoke with our county this week and was told he IS eligible even though he does not have a cognitive delay, so we just have to fill out the paperwork and we'll see what Nick wants to do. He is waiting to hear what is available. They have different sports each season he can pick from. I always thought it was RIDICULOUS that someone with CP could not participate in Special Olympics if they did not have a cognitive delay. In fact, I was really angry about it for some time. It says, "you are disabled, but not disabled enough!" Just silly if you ask me. Anyhow, that's just my thoughts on it. (www.specialolympics.org)

Next weekend we're off to Maumee Bay State Park for Labor Day weekend. We rented a cabin for the weekend and plan to have a party with family and friends on Saturday to celebrate Nick's 16th and Isabella's 10th birthdays! Should be fun!

"Can't is a bad word!"

When Nick was 7 years-old and in the second grade in 2000, I was pulled aside one day at his elementary school by one of his new aides (or para-professionals, people who assist Nick at school with physical tasks such as writing, carrying things, etc.). She wanted to tell me how "impressed" she was, "tickled" with Nick. She said Nick was trying to walk one day within the classroom to get from one point to another without his walker. He was told by his para that he could not do that, for safety reasons I guess and because he usually used a walker. He looked at her and said, "Can't is a bad word!" Of course, what he meant was, "if you tell me I can't do something because I have cerebral palsy, I am going to show you that I can, don't tell me I can't". He wasn't being disrespectful. He was just saying, "I'm doing it, you see me doing it, don't tell me I can't". Greg and I got such a kick out of this because we knew what Nick was trying to say and do in his wisdom at the age of 7.

Nick has always been "determined", and showed this determination as a toddler in physical and occupational therapy and at home. We were told, by more than one person, that Nick would probably never walk or talk and would have mental retardation or what they now call cognitive delays. There is a wide range of functioning levels within the population of individuals with CP, while there may be similarities between individuals, CP affects everyone differently. When Nick was that a baby, we started to educate ourselves about CP, read every book we could, and spoke to people who were "experts". We said, if Nick does not walk or talk or has cognitive delays, we will love him just the same and make sure he has what he needs. We wouldn't want to be in denial about any challenges Nick would have because that would NOT help Nick is any way. We took the approach we still use today, be realistic AND hopeful at the same time, so you can address this issue and shoot for the best outcome. So, when Nick was a baby and we were told these things, we said, ok, but how do you know? So, we will be him all of the therapy and services he needs and we'll see what happens. Well, we could tell from a VERY young age, even before Nick spoke (and he spoke later than other babies due to the speech impediment from the CP) that he was very smart. He would show us numerous signs and examples of this and we KNEW. In fact, one school psychologist who was evaluating Nick to go to Kindergarten said to me, "is this an overly hopeful parent talking?" or does he have cognitive delays? Of course, anyone who spent time with Nick knew the answer to that. After much planning and trying to convince people, Nick ended up in regular education classes with a para to help him with physical tasks, and the use of technology to help with writing, etc. This is still the case today and Nick has always been an A-B student and done the work the other kids do. So, for Nick, this was the right placement for him and he showed us what he could do.

Nick has always been competitive with himself and determined to "show" people what he CAN do vs. what he cannot do. We've told him, you have nothing to prove to anyone, etc. He, however, just has this internal trait and is very self-disciplined and determined and works hard. He has a positive attitude overall and he lives with pain. He in fact deals with his challenges much better than most non-disabled adults I know. We could all learn something from Nick and people like him.
I believe that we as parents teach our children, of course. I think we learn as much from our children however as they learn from us, maybe more. I think most adults dismiss children too much, not listening to them, thinking they have the "wisdom" and automatically "know more". While that might be the case for some things, I think children are more accepting, honest, and open-minded than more adults I know. Children have to LEARN to be judgemental, racist, discriminatory, unkind. I know I've learned so much from both of my children, and Nick has taught me a lot. He has taught me to slow down, talk less, and listen more to people. One thing that is so frustrating for Nick is that he has CP and a speech impediment and it frustrates him when an adult is "in a hurry", does not slow down enough to listen to what he has to say and let him finish what he has to say before they interrupt him, or try to finish what he is saying. Or, they act like they understand him and he knows by their responses that they don't. I've also leaned patience and to be positive and hopeful. Thanks Nick!

It is in the spirit of "Can't is a bad word!" that I am putting these pics on the blog from Zip lining, just one of the many things Nick did this summer living as an individual with CP. On 8-19-09, Nick and Greg went with my parents and sister and his oldest cousin Chloe to Hocking Hills, Ohio to go zip lining, something my parents did for Nick and Chloe's birthdays this year. I could not go as I had to work and so Greg and I plan to take the kids and go in the near future. Nick had a blast! He said, "zip lining" is the ultimate physical therapy for someone with CP! He said, walking on those rope bridges and the zip lining itself was fun but a challenge. He was so sore the next day! How cool that he did it and loved it! I'm sure we'll see more examples of what Nick CAN do in the future.

Check out http://www.hockinghillscanopytours.com/. They were wonderful working with Nick. My parents informed them ahead of time about Nick having CP and they had no problem working with him. They provided two of their staff to assist Nick during the tour and they were fantastic, including dragging Nick and his wheelchair up the hills! It was very freeing for Nick to be able to fly through the air! They never said, no he can't do this because he has a disability, they said, sure, we'll give it a try and they did. So, thanks Canopy Tours!

Happy 16th Birthday Nick!

Happy 16th Birthday Nick!

It's hard to believe that 16 years ago today, our beautiful baby boy, Nick, was born and changed our lives forever for the better! I can remember the evening before and the morning like it was yesterday. In fact, last night, I laid awake until about 3:30 a.m., I think because I was re-playing the night I went into labor and the entire experience in my head, trying not to forget the details.
It's cliche, but time goes by much too quickly!

Plans to go to a Toledo Mudhens Game tonight and a steak dinner beforehand to celebrate, unless it rains and plan B is a steak dinner and a movie. (Please don't rain, Nick loves the Mudhens games and so do we!)

More pics and details to follow this week..................

The last few weeks of summer...places to go, things to do, people to see

It's Friday and Nick is still sick. He's been sick this past week, ever since last Friday night and not getting any better so far. Waiting for the nurse at the doctor's office to call back.

Isabella is away with my parents in Indiana, from this past Wed. until tonight for a "mini-vacation" at my brother's cottage and with her two cousins. We have a big weekend planned, going to Greg's cousin's house (Connie and Greg) in Grass Lake, Michigan for a big family get-together with Greg's family. Greg's grandmother is coming from Rochester Hills, Michigan and we haven't seen her in quite some time.

Next week is a big week. Tuesday August 18th is Nick 16th birthday. Hard to believe that 16 years ago, I was getting ready to bring this miracle into our lives and the world. How did we get so lucky to have Nick and Bella for kids? I get a little sentimental around their birthdays and really try to reflect on the day they were born. We are going to a Toledo Mudhens baseball game the night of Nick's birthday with our parents and Greg's parents. We plan to take him out for a steak dinner next week too (his favorite!). Then on Labor Day weekend, we plan to have a combined birthday party for Nick and Bella (Bella's birthday in September 20th) for Nick's 16th and Bella's 10th birthday. We rented a cabin at Maumee Bay State Park for that weekend and plan to celebrate with family and friends.

Like most parents, the month of August is the winding down of summer, and we spend it getting in as many last minute fun things before the kids go back to school. Also as most parents know, the back to school process is a job in itself, paperwork, school supplies, school clothes, school fees, open houses, orientations.........

Every August for us is the same as it is for most parents. It's filled with the last plans of summer and back to school. For us, we have Nick's birthday and other family birthdays as well. It's also the time when Nick goes to see all of his doctors and specialists before he goes back to school. So, our appointments this month include his pediatrician (well visit), GI doctor, orthopaedic surgeon, orthotic (AFO's, Ankle-Foot Orthotics) adjustments, new wheelchair pick up and adjustments, dentist, orthodontist, and because he is turning 16, we have a lot of assessments and paperwork for school and to determine his eligibility for MR/DD services. I have 5 packets of paperwork to fill out between the kids for various things. Our calendar is so full, I can't even read it in spots ( I know, I need to get a new calendar system!). Also, Assistance Dogs of America wants to come out this month to see how things are going between Nick and Charger and Nick's OT from school wants to take him out to look at wireless keyboards for school for him to work on. All good stuff, but even after doing this for all these years every August, I still get a little overwhelmed. Nick also had camp this month as I talked about in a previous post and he is going zip-lining for a few days next week with my parents and his older cousin and Dad. WHEW!!!!!!!!!!!!!! I get tired just thinking about it:) In all seriousness though, I've learned to try to take it a day and a week at a time. We DO want to enjoy the last few weeks of summer together so it's best to focus on that. This is all just another example of the "parenthood magnified" thing, meaning we have all of the "normal" things other parents have to take care of and then all of the "disability stuff". We try to take care of it as much as possible before he gets back to school to reduce the time he misses, although he still has to miss a great deal of time for appointments and illness usually.

Sometimes it feels good just to talk about it ( or write about it) once and then "move on". If it seems like I'm complaining, I'm NOT. Just stating the reality of what is. We have a great life as I've said, really, but these are just the realities of having a child (or family member) with cerebral palsy or any other chronic illness/condition. It's just the way it is! I try to let professionals know this when I speak for different classes or groups because I think they need to be sensitive to these "realities" and be aware that there is much more going on than they probably know when they are working with families. Just something to think about...........

Letting Go-Better Late Than Never

Last week, Nick went to Camp Storer in Jackson, Michigan for a week-long overnight camp. (http://www.ymcastorercamps.org/) He was able to do this because the Ability Center of Greater Toledo provided the staff and assistance to assist Nick and other campers with disabilities so they could be included in this camp experience. (http://www.abilitycenter.org/) This was a first for Nick, who will be 16 next week!

I admit, beforehand, Greg and I were pretty nervous. We wanted Nick to have this experience which was long overdue, but we of course, worried about him having all of the physical support and assistance he needed. We also worried that Nick wouldn't be able to be fully included in activities. The first day we dropped him off, however, we were able to see the cabin, the staff, and left with a sense of peace that everything would be OK and also a GREAT sense of excitement for Nick. As it turned out, Nick had a GREAT time and had all of the help he needed, as well as a lot of fun. Nick said he got to do things he was never able to do and he loved it. He went swimming, rode horses (he used to ride them for therapy), shot rifles (interesting for someone with CP and involuntary movements........), had camp-fires, survival skills, crafts, sports, and a dance. Nick said he got out there in his chair and just danced like crazy. Afterwards, we went to the former "All-Star Dairy", now called the Parlour, with our parents and our niece and nephew. The four kids had the 21-scoop "Dare to be Great" which was an experience I had as a kid after being picked up from Camp Storer. Then we came home and I got to experience "camp dirt and sand" and two days of "camp laundry" and you know, I didn't really mind. I mean, this is what we've always wanted for Nick, to be able to do the things that all other kids do. I think sometimes other parents we know (unintentionally) take these things for granted. Unfortunately, by Friday night, the night he came home, he got REALLY sick and is still sick, but that will happen! Nick get sick really easily, so we have to be mindful of this. Sometimes a "cold" for other kids, turns out to be much more than that for Nick. It takes a lot more out of him. I always cringe when I hear people say things like, "it' just a cold" or minimize it, because for Nick, it often affects him in a much more serious way. So, we have to be careful. Having said that, we are still just so happy he had such a fun time!

Friends and professionals have told us and teased us for years now, telling us at times we have been "overprotective" of Nick, that we needed to let him do more, etc. I have to say, letting kids go is something all parents have to do and experience. It's never easy!! I admit, we probably have been overprotective at times, for sure. After experiencing mistakes and bad treatment by professionals at times, Nick's illnesses, and knowing the level of assistance he needs (which people who don't spend time with him or know him underestimate...), we definitely have been overprotective, or just plain cautious. I always say, parenting a child with a disability is "parenthood magnified" meaning you have the "normal" parenting issues, then the added layer of disability issues. So, for us, we've watched Nick not be included in things because or his disability, or activities not having the needed supports for Nick, and all of those kinds of things. Our experience has been, if you listen to others, you can't "win" because some people think we let Nick do too much and should "help" him more and some think we haven't let him do enough. I think we've done exactly what we have felt was right for Nick at each time, was right for us too, and have just done the best job we could at each moment in time. The bottom line is, I think we are a good balance between being protective BECAUSE of Nick's disability, AND we want him to get out there and live, be included in the world and have all of the experiences others have. I think we are realistic and optimistic at the same time. So, we are in the process of "letting go" as Nick is growing up, and it is better late than never! I can't say we'll do it perfectly, but if we have our way, Nick will have more opportunities to be out there, where he belongs, like he was last week at Camp Storer. We are thankful to the Ability Center for making that happen. What's next? I think we're ready and so is Nick.

No "One size fits all"......

We'd like to say that in telling our stories and experiences, we firmly believe that there is no "one size fits all" approach to anything and that the decisions and choices we've made along the way have been right for us, but may not be for everyone. From the moment we found out Nick has CP and then later his hearing loss, we've read every book we could find and spend a great deal of time seeking resources, talking to others and finding out "what is out there". With CP, there is a "wide range" of functioning levels and impairments. Any services or therapies we've secured for Nick and our approach to things have been what we feel are the right ones for Nick and our family. They may not be for others. We've found other things out there that have not been right for us. That is OK! It's important to share information so people can be aware of options and maybe get ideas from others. Sometimes, when we've tried things, it has been a "trial and error" approach and it may or may not end up being right for Nick or us.
We attended a support group that someone with VERY GOOD intentions put together at Nick's therapy provider. The idea was great and needed but we ended up eventually not

attending because other parents were "comparing" their child's level of impairment with Nick's. We thought, "do you get a gold star because your son or daughter is more or less disabled than ours?" It was just not right for us but others found it very helpful and that is GREAT. Looking back, we appreciate the opportunity to meet other parents and find out what we did and did not want from support networks. We think it is important for parents to support each other, even if we do not agree on approaches or therapies for our children, what is right for one family or individual may not be right for another. The important thing (to us) is that we ALL find what works for us and share information and experiences. That will lead us to talk about "support" more later.

All of that applies to this blog as well. We are sharing what we've experienced and are experiencing with Nick and his CP. It may or may not be right for anyone else. And that is OK!!