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Most 10 year olds, when asked, “What do you want to be when you get older,” would probably give one of a few answers–Fireman, Policeman, Football Player . . .  maybe a Doctor. I was very specific. I wanted to Rock! The first time I heard Van Halen’s “Little Guitars,” I wanted to be Eddie Van Halen. When I found out Eddie was married to Valerie Bertanelli, it sealed the deal.  Reality . . . the first instrument I played was a bass guitar. I didn’t touch an electric guitar until almost 10 years later.

Being the father of a child with special needs, you find yourself being transported in an invisible time machine quite often. You do your best to live in the now and try really hard to appreciate every little accomplishment. That being said, you tend to venture into the future, not to find out tomorrow’s winning lottery numbers, but to try and see what will become of your kids.

Luke had poor fine-motor skills for quite some time. With years of Occupational Therapy, they are starting to get better and to a point where he is able to pick a coin up off the floor and even button his shirt. It wasn’t long ago where I would see him struggling to button his pajamas, watch him give up and make his way over to me to ask to do it for him. I made a decision a few years back that if I saw him do something on his own, I would tell him, “I’ve seen you do this before, you CAN do it again and WILL do it from here on out.” Of course, that doesn’t always stick, but I thought it was the right thing to say.

When Luke would come to me to button those PJ’s for him, I would crouch down to his eye level and ask him a series of questions . . . “Do you want to grow up and get married? Have a good job? Have kids of your own? Live in a nice house? Drive a car???” His answer would always be “Yes.” I would answer, “Well, it all starts with you buttoning that shirt yourself.” Even though it frustrates him from time to time, I know he appreciates what I am doing. I know this because when he would button that pajama shirt by himself, he would tell me about it. He would continue to tell me until one day, he realized he didn’t need to tell me anymore. It was something he should be doing and he now realized it.

I’m sure you guessed by now that I am not Eddie Van Halen or any version of him. I am me. I am me because my parents let me grow into this person that I have become.  We can’t plan out our kid’s future any easier than they can at 10 years old. What we can do is guide them and support them. Some kids like Luke might need more attention and guidance than others, but that’s what we are here for. It’s part of the deal we made when we decided to become parents.

One of Luke’s favorite songs is “Should I stay or should I go” by the Clash. When it comes to your kids, the answer is always “Stay.”

Don’t forget to check out http://www.beautiful-people.us/ Soccer season starts 9/14!

In case you don’t know or didn’t read my first post, I am a sports-a-holic.  I’ve been playing sports since I was 6 and following shortly after when I came in possession of my first baseball card, which if I remember correctly was a 1977 Bucky Dent Topps card which was part of a Burger King set. I have since given up both fast food and the NY Yankees. (Anyone can root for the Yankees, being a Mets fan builds character. Remember that kids.)

When it came to my son Luke, I don’t think it was so much the seizures that blocked him from competing with the other kids, but the Hypotonia along with his learning disability that was the problem. When he was 4, we signed him up for soccer here in Warwick. He ran out on to the field with no issue, but once he got there, he kind of just stood around and stared. He was more interested in why the referee was wearing such a bright green shirt than the game itself. Realizing this sports venture was going to be short-lived, I started to go into panic mode. How could my son not play sports?

This is where living in a small town actually worked in our favor. We had seen a flier about an organization called Beautiful People, but didn’t act on it right away. I was coaching my son Shane’s tee-ball team and one of his teammates was the daughter of Peter Ladka.

Peter founded Beautiful People in 2006 and based the organization out of Warwick. The vision of Beautiful People is for it to be a “community sports organization that would enable joy, inspire hope, and fulfill dreams among children with disabilities and their families.” Beautiful People’s mission is “to build bridges between children with disabilities and their families and the broader community of Orange County by providing adaptive sports for children and young adults, age 5 and up.” (Beautiful people)

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Baseball was the first sport we signed Luke up to play and he loved it from the first time he took the field. We have since had him participate in their Soccer & Basketball programs. Everyone involved gives so much to keep the machine going, but ultimately, it’s the kids that make the magic happen. There’s not enough space here to mention everyone, but if you see Morgan’s excitement when she makes a basket or Hannah’s smile that lights up whatever venue we are in, you would know what I mean.

Christopher steps to the plate like Ichiro, while others look to be overwhelmed with excitement of something they can call their own. It is also where I met Daniel Fratto. Daniel was “the voice” of Beautiful People baseball just like Bob Sheppard was the voice of Yankee Stadium. He was also the most inspirational, most positive person I have ever met and someone I think about constantly and pull strength from when dealing with Luke’s issues.

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Thanks to Beautiful People, Luke has his thing which in turn is our thing. He has something to look forward to and something we can do together. He doesn’t communicate well verbally, but I’ve known him long enough to read his body language and see it can make him sad sometimes that I spend so much time playing basketball with Shane. Heck, it makes me sad. It’s not a good feeling when as a parent you look at your own child and think “why can’t he do this?” Well, he can do this. He can do anything he puts his mind to; it just requires a little more time and effort on all our parts.

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I think I speak for most parents of Beautiful People players when I say we are very grateful for not only finding this organization, but for all those who keep things going. Courtney Dolce, a friend of Beautiful People once said “Playing sports should not be that difficult”. I couldn’t agree more. Beautiful People makes it that much easier.

For more on Beautiful People and how to join, volunteer or donate, go to http://www.beautiful-people.us/about/

I will leave you with a quote from one of my favorite bands, the Gaslight Anthem “And I’ll be with you through the dark, so that you do not go through the dark alone” – Brian Fallon

Stay tuned…

Watching my son Shane play basketball is truly my favorite past time. He’s only seven, but boy can he dribble. I often daydream of being in the stands and watching him light up the court on a College hardwood, or even see him cutting down the net after winning the NCAA title. I talk about him constantly. I probably exhaust my welcome because I talk about his accomplishments so often, but for the most part, people are just as interested when they see him play.  He’s like a better version of me. A father’s dream come true.

So why do I get sad from time to time? Well, Shane isn’t my first and only son. Shane is my second. Older brother to Cole and younger brother to Luke. On August 28, Luke will turn ten years old. It boggles my mind how fast the time has gone, but nonetheless, ten years have passed.  You see, Luke was supposed to be my sports star. When we lived on Staten Island, we had not one, but two basketball hoops in his play room. Before he could stand he was kicking a soccer ball around.

What we found out shortly thereafter is that Luke would be diagnosed with Focal Epilepsy. His first seizure was the beginning of our adventure. Once we started to grasp this, the hits just kept coming. Low muscle tone, asthma, multiple food allergies and then eventually we would find out he had a Learning Disability. We’re not sure the reason behind all of this, it just is.

I’m here to talk about my experience as a dad to a son with Special Needs. A dad to a son that cannot do everything I hoped and dreamed he would. A dad to a son that I could not imagine living life without. Most importantly, a dad to a son that changed my life forever.

I want to reach out to other parents and say, it’s okay to have certain feelings and even though it can sometimes feel this way, you are not alone. You always hear things like “things can be worse,” and you know what? They really can be.  Stay tuned…

Last week I met with Flo Hannes, the chair of the OT Department at SUNY Orange. The college just formed a new Center for Assistive & Rehabilitative Technology at their Middletown campus. Their role is to help those with disabilities use the new assistive technologies to lead a productive life.

What if your child can’t use a computer keyboard because of difficulties with eye-hand coordination? Call Flo, and she and her staff will arrange a demonstration of the new computer technologies that you can use at home.  At their center you can not only see the equipment but you can try it out as well.

But how does this relate to Guitar Hero? See what Flo has to say:

For more information about how assistive technologies can help you in your life call:

SUNY ORANGE

Center for Assistive & Rehabilitative Technology

845-341-4390

Patricia S. Phelan runs The Law Office of Patricia S. Phelan – a practice dedicated exclusively to the field of special education law and advocacy.  Ms. Phelan has been practicing law for eighteen years and is an experienced litigator as well as a parent of a child with a disability.  For guidance about your child’s rights under the law, please contact Ms. Phelan by email at PSPESQ@aol.com or telephone at 914-629-4707.  For more information about The Law Office of Patricia S. Phelan, go to www.Phelanspecialedlaw.com.

When selecting an evaluator to perform an IEE, remember these tips: 

If possible, select an evaluator who both you AND your district are comfortable with.   Even though you are not required to select from a district list, there are often advantages to picking an evaluator the district is familiar with; the district is more likely to respect and embrace that evaluator’s recommendations. 

Ask for the evaluator’s credentials up front; request a copy of their curricula vitae/resume.  You want to make sure the evaluator is qualified to conduct the evaluation and that their recommendations will be well respected. 

Try to pick an evaluator experienced with your child’s disability. Try to pick an evaluator who comes recommended by other parents, your pediatrician or anybody else you know and trust. Try to find an evaluator who can reliably assess your child AND who can thoroughly memorialize his or her recommendations into a clearly written report, containing conclusions and lots of recommendations, in plain language.  If possible, try to review a sample of the evaluator’s work from another parent, etc.

Pick an evaluator who as part of their assessment, in order to get a complete picture of your child, will: Visit your child in his or her present educational setting (i.e. current classroom) [note, the law does not allow the school to prevent the evaluator from having the opportunity to observe the student as part of the evaluation]; Speak with your child’s teachers; and Speak with you (the parent). Make sure the evaluator is comfortable participating at your child’s IEP meeting, which may become necessary.

Even though your district will be paying for the IEE, you and your child remain the client.  The school district is merely a third party payer.  Therefore, the school has no right to control or direct the evaluation.  Confirm that the evaluator will send you the report first, and discuss the results with you, the client, before they send the report to the district.  If the evaluator is not comfortable with this, it is a good indication that they are not the evaluator you want to use.

Finally, think of the IEE is a wonderful opportunity for you and the school to come together in an effort to gain important insight into your child’s needs.  You want the district to respect the evaluator and the integrity of the evaluation conducted.  After all, it is your hope that the recommendations provided on your child’s behalf will be understood, agreed with and followed by the other members of the IEP team.

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