Handouts for Special Needs Parents, etc

Did you know that there is some awesome stuff to be found online to help people navigate the special needs waters!  Today I wanted to mention one of my favorite handout websites: Super Duper Publications .  And we all know I’m poor so of course these are FREE!

There are 215 different handouts.  Some go into some deep stuff like What is selective mutism? .  Others go into what we think are ”stupid questions” and are too afraid to ask like What is a special education teacher? .

If you get some time go check it out.  You may learn something.  You might find something to share with a provider.  Who knows what you can do with 215 free handouts!

FYI:  You will need to set up a username and password but I don’t get spam from them at all

Heartache

I’m sure some of you noticed I didn’t post anything yesterday.  I wrote out a couple of things but could never complete them.  Early yesterday morning I encountered something that shook me to the core.  It replays over and over in my head.  Every time I think of it I get teary.  My heart breaks at the thought…what if that was my son.

My office submitted a tree into our local Festival of Trees.  On Friday mornings the program holds a little get together for the tree creators.  My coworkers and I had a great time viewing the trees and socializing with other companies who submitted trees as well.  As we were leaving the event, the lobby was filled with a lot of handicapped adults, most of them in wheelchairs. 

Immediately to my left was a young man I remember from school.  His name is Bryan.  I volunteered in the special ed room from the time I was in third grade.  Bryan was usually in there.  He is in a wheelchair.  I think he has something like cerebral palsy.  He doesn’t talk but he has a communication board.  He drools a little but he has an amazing smile.  When you talk to him you can see the joy burst from his eyes. 

Quickly after recognition left, I saw that he looked like shit.  Sorry but there is no better word for it. In school Bryan was always neatly dressed.  He was freshly shaved at least every other day.  He never had the dried drool on his chin.   Yesterday, he looked like he hadn’t been shaved in a good 4-5 days.  He looked dirty.  It’s only 10 a.m. and he looks dirty!  His face looked like it hadn’t been washed.  His clothes were crumpled looking.  You could tell that this wasn’t a group of people brought together but probably a group home. 

I was so appalled, saddened and angry that I couldn’t speak.  I still feel bad that I never said “Hi, Bryan” to him.  He loves it when people speak his name and say hi.  I went along with the motions as I left the building but inside I was so heartbroke for this man and all those in that situation.

There is no way that I could put Matthew in a group home right now.  Not after seeing that.  I plan to care for him as long as humanly possible.  And my daughters, as much as I don’t want them to, swear they will care for him after I can no longer do it.  I’m grateful.  I hope it works.  I hope Matthew will always be taken care of with love and kindness because from what I saw yesterday, Bryan is not.

Let’s Meet Hunter … and his mom

Back in November I posted a news article about a boy with autism and fragile X syndrome named Hunter.  There was a video that accompanied it on the news site but some folks weren’t able to view it.  Well, Hunter’s momma commented on the post this morning and for those interested she has a copy of the video!!

You can reread the original article here.

And here is her comment

Hello to you all,

I am Hunter’s mom and just received this link from my cousin. I to would like more focus on Fragile X Syndrome. However the basis of the report was on the early detection of Autism. I knew about the Fragile X Syndrome but was originally told he would only have autisitc like behaviors. Well for Hunter he does actually have Autism which to me is as little different then just exhibiting some of the behaviors. My nephew also has Fragile X but he does not exhibit any of the behviors of autism. Had I known then I would have known what to expect. I am not big on suprises especially when they involve my child. I would be glad to talk to any of you. We are all in this together. Maybe we could come up with a way to get the disorder out there. I get so sick of people saying Fragile what? I do have a copy of the video if anyone would like a copy. You can contact me at spielman1102@aol.com

You all have a wonderful day!

Margaret Spielman

Thanks for stopping in Ms. Spielman and sharing your handsome son with the blogging world.

Let’s Meet Hunter

This morning I ran across a tv news story of Margaret Spielman’s son, Hunter.  They live in Georgia, USA.  He was diagnosed with fragile X syndrome when he was little.  More recently, they tacked on the autism diagnosis as well.  Though the information given is probably nothing new to many of us I was intrigued by the video the news station took of Hunter.  Hunter is 12 and he exhibits many of the same mannerisms that Matthew does.  If you have never seen how a child with autism/fragile X behaves please check out the video (or if you just want to compare your child behaviors or even just feel better that your child isn’t the only one out there that does the things he/she does).

(because this is from a tv news station I’m not sure how long this will remain at these links…but it never hurts to try ) 

Here is the link to the news story & video: Mom Dealing with Disabilities

If you click Hunter’s picture it will go straight to video

Following is a summary of the text:

The AAP released the recommendations in a report Monday, Oct. 29.

The AAP says autism stems from a neurological disorder that affects the normal functioning of the brain, usually impacting a child’s social interaction and communication skills. There is a broad spectrum of autism, from mild to severe.

Dr. David Harvey is a pediatrician in Warner Robins who says most mild cases aren’t diagnosed until children enter pre-k or kindergarten. He says early detection will improve the lives of autistic children and their parents.

We spoke with one Middle Georgia Mom who couldn’t agree more.

Dr. Harvey diagnosed Margaret Spielman’s 12-year-old son Hunter with Fragile X syndrome at 10-months-old, meaning his body doesn’t produce the protein he needs for proper learning and behavior. The syndrome can cause autistic-like behaviors, like when Hunter bites his fingers and flaps his arms. But it wasn’t until 3 years ago that a specialist diagnosed Hunter with autism.

His mother said, “The earlier that you can get a diagnosis and say this is what it is and then you can make your plan because the stages, not only the stages you have to go through mentally as a parent, to come to that acceptance, but then to be able to get to that place and be able to start saying OK, this is what we need to do for my child.”

Margaret says life has been easier since the diagnosis, since she understands why Hunter acts and reacts the way he does. Her understanding has helped Margaret make life better for Hunter.

Now she spends her time helping other parents dealing with disabilities as well.

She works as a liaison between parents with disabled children and the Bleckley County Board of Education. She is also the regional coordinator for a non-profit group called Parent to Parent.

There, Margaret helps parents connect with one another, find resources like therapy and hosts support groups.

A Time For Thanks

I received this in an email I receive from the ARC in our area each month.  It is very good and is perfect for our world.  Have a blessed Thanksgiving.  Have safe travels, full tummies, and may the Dallas Cowboys kick some major booty!

 Revolutionary Common Sense by Kathie Snow

http://www.disabilityisnatural.com/index.htm

As the Thanksgiving holiday nears, it’s time to reflect on the many things for which we’re thankful. I hope you’ll take time to share your appreciation for others—to personally tell people, “I’m thankful for you and what you do!” Words of appreciation can make someone’s day and inspire more great deeds! I’m thankful for:

• Everyone who uses People First Language and promotes positive images of people with disabilities.

 

• People who don’t pepper their vocabulary with disability-labels-turned-insults (such as idiot, moron, imbecile, lame, retarded, etc.) and who don’t use disability labels as metaphors (like “he turned a deaf ear,” “she was blind to…,” “the economy was crippled by…,” and so forth).

• Parents who have high expectations and dream big dreams for their children with disabilities—and their other children, too—and then do whatever it takes to support those dreams.

• People with disabilities who teach us what’s really important.

• Parents and professionals who recognize the expertise of adults with developmental disabilities.

• Parents and Early Intervention workers who ensure very young children with disabilities remain “babies in their natural environments” instead of the youngest “clients in the system.”

• Parents who choose to keep their three- and four- year-old children at home or in other typical settings instead of in segregated, special education settings.

• Educators who make inclusion work.

• Parents who know that inclusion in all areas—not services—is the path to their children’s success.

• Therapists and other professionals who practice as consultants and provide technical assistance so parents, teachers, and others can ensure children  and adults with disabilities can engage in beneficial activities in the most natural ways possible, in natural environments—so they can live Real Lives.

• Physicians, nurses, and other health care professionals who help parents remain proud of and hopeful for their children with disabilities, instead of plunging parents into the depths of despair with dire prognoses.

• Parents who stand up for their children and reject the negative comments of doctors, therapists, educators, or others who presume to know the value, abilities, or potential of a child, based on a medical diagnosis.

• Parents who protect their children from attitudes, language, services, and interventions that destroy self- esteem and crush self-determination.

• People who embrace the paradigm that disability is natural, and who know that a person’s abilities, interests, and dreams are more important than a diagnosis.

• People with disabilities and family members who know that accepting services is a choice, not a mandate, and, as a result, they make thoughtful decisions and use the system as The Last Resort, not The First Choice.

• Providers who proactively collaborate with non-disability entities in their communities to meet the needs of people they serve in typical, inclusive settings.

• People with disabilities and family members who seek and find assistance, inclusion, reciprocity, and support from the natural supports in their communities.

• People who recognize the value of assistive technology, and who do whatever it takes to ensure people with disabilities have the tools they need to succeed.

• People who recognize the immorality of segregating individuals with disabilities—whether in special ed preschools, special ed classrooms, congregate living arrangements, day programs, sheltered/enclave work, and other “special” (segregated) activities.

• People who know that inclusion is borne not from laws, programs, and services, but from our individual and collective hearts, minds, and actions.

And I’m thankful for everyone who reads this message, shares it with others, lives it, breathes it, and commits to doing whatever it takes to create a more welcoming, inclusive society for all.

Happy Thanksgiving!

©2001-06 Kathie Snow, http://www.disabilityisnatural.com. Permission is granted for non-commercial use of this article: you may print this web page and photocopy it to share with others. As a courtesy, please tell me mailto:kathie@disabilityisnatural.com) how/when you use it. Do not violate copyright laws: request permission before reprinting or republishing in newsletters, on websites, or in other media.

Horsey Article

I’m busy slaving away at the old computer but I did find an interesting news article that I think would be a great read.  It’s about a variety of special needs kids who are benefitting from horses.  It specifically mentions various disorders including autism and fragile x syndrome.

We had Matthew in a program similar to this and we were amazed at how well he did.  I was concerned about him wearing a helmet because he hates things on his head.  He put that thing right on.  He is also tactile defensive but by the end of the summer he actually petted the horse.  So if there is a program similar in your area it’s not a bad idea to check into it.  The only reason we don’t do it anymore was because Special Olympics Golf conflicted and the lady was a little whiney…kinda annoying. 

Here is the news article:  Shining Stars Offer Therapy on Horseback.  It has 5 awesome pictures too.

Hopefully life will mellow soon and I can fill you in on all the latest and greatest events in our casa

My “Aaahhh” Moment

I got an email from Matthew’s teacher today.  The first week of school isn’t even over yet.  I was expecting that he had a meltdown, peed himself (or worse), wouldn’t do nothing but stare out the window.  Something!! 

But I got this instead…

I just wanted you to know what a wonderful job matthew is doing. Our schedule allows for some time that he is the only student in here. Mrs. Bell works with him on letters and sounds and I work with him on colors and counting. He has settled right in with Mr. Rozycki’s class. Mr. Rozycki likes for him to go a few minutes early so that he can socialize with them. He has his own desk. I am so excited that he has shown so much progress and seems to be continuing in his growth.

judy