5 Tips for Transition Planning

e. roosevelt quoteSchool bells are ringing in most neighborhoods across the country.  Yesterday was the first day of school at the Elizabeth Lee Black School.  Approximately 225 children and youth, 3 – 21 years of age, came off their busses.  Most were smiling, but there were a few tears of children who were experiencing their first day away from mom and dad.  For some parents like myself, there is always a tinge of sadness.  Friends’ children are off to college.  Ryan is not.

A few tips I’d like to share with those of you whose son or daughter might, like Ryan, not be on the college track.

  • Whether your child is 13, 16 or 19, transition planning should be your “buzz” word. It’s never too early or too late.
  • You are your child’s strongest advocate. Whether you are speaking to your child’s school teacher or your legislators, you know your child best! If you do not speak up for your child, no one will.
  • Be prepared for this argument: “There just aren’t enough funds.” As an administrator, I know that managing available resources is a challenge, but as a parent I will never accept that as an acceptable response.
Down syndrome gets accepted into college

Rion Holcombe, a 20 year old with Down syndrome, accepted into Clemson LIFE.

There are also new options to consider if your child has intellectual disabilities.

Always keep in mind that there is no one right program for every person.  Consider your son’s or daughter’s strengths and interests and begin the quest.  I would be interested in hearing about programs that you find, are currently using, or have used in the past.

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The Power of A Mother’s Love

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L-R: Emily Pinto Taylor and Josh Taylor in Peru

Guest Blogger: Emily Pinto Taylor

It feels utterly fitting that I write something for this blog, which I’ve read for years and the topic of which is near and dear to my heart. Autism Spectrum Disorders have for me (as they do for so many others) a special meaning – I grew up around kids with disabilities at the Barber National Institute (then the Dr. Gertrude A. Barber Center), where we would visit after school a few times a week, getting grilled cheese sandwiches and fries from our friends in the café and eating hard candies out of my Aunt Gertrude’s candy dish. Between that and my cousin, Ryan, who has Autism, I am lucky enough to have been blessed to know people with disabilities and to have them change the way I see the world in a powerful way.

I’m in medical school now (about to graduate!) and I was lucky enough to spend a Map of Santa_Clotilde Perumonth in July working in a rural hospital and clinic in the middle of the Amazon rainforest in northwestern Peru. While I was there, I had an interaction with a young mother of a child with a disability, which reminded me (as I have seen over and over again) how incredibly strong the love of a mother is for her child.

One day, half-way through the month, I sat with this woman, whose 8 month old son has Down’s Syndrome, and talked about her life. About her hopes for her child, about her experiences after having him, about the baby’s dad, who left her when he saw him, stating, “that is not my son.” About her life now, how she lives with her parents and can’t work because she spends the day taking care of her small baby and isn’t supported. And about her future, as she’s only 18, but with a positive family history for Down’s, her likelihood of having another of her future children have the disease is much higher than the general population.

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Santa Clotilde, Peru

We talked about what that is like for her, whether she understands the significance of that fact and what she imagines life will be like for her son in the future. We talked about whether she understands the risk that she runs, having future kids, but along the underside of the conversation ran the social convention there, which dictates that most people have 4-8 kids; very few people have I met with fewer.  I wanted to speak hope to her, to speak hope over her life and his future with such a genuine passion that at a few points during the conversation, I lost my words. It was like those moments in surgery when you find out the tumor is cancerous or you deliver alive the tiny preemie and watch them move, where you have this mask that covers your face and hat that covers your forehead and all you’re left with are these transparent plastic glasses over your eyes, and your eyes have to communicate everything — all of your fear about this tumor, all of the promise for this squirming baby, all of your hope and love and kindness… all of it. And you raise your eyebrows a little, crinkle your eyes at the corners when you smile, and you hope they can tell, and it’s enough.

Nothing I did that day was enough, but I hope that it came across regardless. I hope that from my bumbling attempts to tell her about my wonderful friends with Down’s syndrome, who are living awesome, successful, happy lives, that she was given a small glimpse of the hope that her son’s life will have. How happy he will be.

She kept saying, “I love my baby, though.” What made me saddest is that she had to keep saying it, as if I’d invalidate it. As if I’d ever want to take that away.

If only we all had that. Had a mom like these mothers, who sleep in the hospital cribs with their kids with piomiositis or pneumonia for the 3 or 10 days they’re hospitalized, sometimes with their two other small kids beside them, the whole family curled up together in a ball in a 3’x6’ space, 4’ off the ground with 2’ of metal bars around the top. The endurance of these mothers is something I will never understand, and it makes me pause before ever assuming anything about them—sometimes they can’t stay to give their child with a raging cellulitis or asthma attack IV antibiotics or treatment. They can’t stay not because they don’t want to save their child, but because when you ask, they live 7 hours away and their other kids are staying in the house alone right now until they get back. And they have to get back.

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Santa Clotilde, Peru

Going back to the States, my impression of mothers there will forever change the way I look at them in the hospital here. I know there is evil in the world, and there are mothers who do not treat their children with kindness and love, who are not the 100% reliable people that we often glorify mothers to be. But I know that I will forever assume the opposite, that a mother (and, for that matter, a parent) wants to do what’s best for their child, and might not know how or have the resources or understand my advice, that they might not be able to stay for IV antibiotics because of their 5 other children living 4 hours away and currently home alone waiting for them, but that they want to. I will always assume that they want to do what is best for their child. And I will tell them that, and often, because I think one of the most validating things for a parent is hearing what a terrific job they are doing. How much more so this is true for a parent of a child with special needs! And how much stronger they are than I (or any of us) ever imagine.

If you’d like to learn more about some of the incredible opportunities for children with Down’s Syndrome in the US, check out some of the links on the previous post!

BIO: Emily Pinto Taylor is a full-time chocolate chip cookie baker and half-marathon runner and part-time medical student (and soon-to-be doctor!) at Loyola University Chicago, Stritch School of Medicine. She is a graduate of Collegiate Academy, Emory University and plans a career working in Med-Peds palliative care.  She is one of Ryan’s most enthusiastic supporters and is always on the hunt for a way to use up those last few summer peaches.

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Autcraft – A Safe Haven For Children With Autism

Autcraft - child playingOnline gaming is not only a great resource for social skills, but also a leisure skill our children can enjoy with their typical peers.  Many children are enthralled with Minecraft, the game that consists of building a world block by block (Lego style).  However, I worry about issues such as bullying, aggressiveness and inappropriate language.  So I was excited to learn about Autcraft, a by invitation only server created by a dad of a son with autism.  Autcraft is described as “the first Minecraft server committed to providing safe and fun (learning) environment for children with ASD and their families.”  How does it work?  In Autcraft, the server is designed to teach players to respect each other and parents are encouraged to assist younger players by demonstrating the mechanics of the game.

To begin you must purchase the autcraft-welcome-page-664x374PC version of Minecraft for $26.  Then you request an invitation from the Autcraft server.  The wait time is approximately one week.  Once you start you will be given a welcome kit consisting of an ender chest, 3 diamonds, a set of tools, and some food. They do not spawn special items or extras in for players and encourage them to adventure out to find items.   If your child is scared of monsters, they currently have 3 different worlds: Peaceful, Hard and Resources World.  The Peaceful and Resource worlds are best for those not comfortable with “monsters.” Hard world will test a player’s ability to keep themselves and their homes safe from mobs that can create explosions, shoot arrows, sword fight, poison and punch. All worlds are set to “normal/survival” and players can die from falling, drowning, starvation, or by lava in all; however, none of the worlds or mini-games allows pvp (player v player) fighting.

afafpov_coverA unique component of Autcraft is their administrators.  The founder and owner, Stuart Duncan, username AutismFather, has a son with autism.  He is also the creator of Autism From A Father’s Point of View.   MathChamp82 is a mom to three boys with special needs including PDD-Nos and ADHD.  LadyCath is Australian with three nephews on the spectrum. Overlord_Krycis is a father to a son with autism.  Farockz is a student from the UK with extensive knowledge of Minecraft and server running.  Last but not least is WeepingWillowTwo, an American expat with a family history of autism.

 

What I really liked about Autcraft was these features:

  • Bullying, killing, stealing, griefing, etc. is not tolerated
  • Swearing is not tolerated.
  • In game ticket/support system. Need an admin to do something, stand where you need the help and use /modreq <message>.
  • Players’ builds are protected using WorldGuard. Ask an admin for protection.
  • All kills, blocks placed, blocks broken, items dropped, picked up and more are tracked so that we can see exactly what happens anywhere.
  • A few mini-games including hide and seek, mob arena, spleef and more.
  • Community Wither fights and other events.

If this sounds interesting to you, I’d suggest that you check out this video.  If you or a family member is an Autcraft player, please tell me what you think of the game.

 

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What Does Chloe’s Law Mean to You?

Chloe's LawDid you know that Governor Tom Corbett signed into law last month the Down Syndrome Prenatal Education Act (Chloe’s Law)?  Originally introduced as H.B. 2111 and co-sponsored by local representatives including Representative Bizzarro and Representative Rapp, this legislation requires healthcare practitioners to provide current information to women who receive a prenatal diagnosis of Down Syndrome.  We have made enormous strides in our knowledge and understanding of Down Syndrome these past 10 years, so it is essential that parents have access to resources that are evidence based.  It was not that long ago that the life expectancy for persons with Down Syndrome was only in their mid-20s.  Today, I know many adults with Down Syndrome in their 40s and 50s. Down Syndrome Flower Garden

For those not familiar with Down Syndrome, it occurs when an individual has a partial or full copy of chromosome 21.  One in every 691 babies in the United States is born with Down Syndrome.  Over 400,000 persons are living with Down Syndrome in the United States.  Dr. Kishore Vellody, medical director of the Down Syndrome Center at the Children’s Hospital of Pittsburgh, noted that the termination of pregnancy rates in the United States range from 60 – 90% when a prenatal diagnosis of Down Syndrome is made.

The Department of Health is charged with updating and maintaining the informational publications on its website.  For further information on Down Syndrome can be secured through:

This powerful video answers one mom’s question when her baby was diagnosed with Down Syndrome.

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Robin Williams – A Legendary Actor

 

Robin Williams-7Today we mourn the loss of a celebrated artist, comedian, and actor.  I first got to know Robin Williams through Mork & Mindy, a TV show that had you laughing nonstop for 30 minutes.  I enjoyed the show so much that he became one of my favorite actors and I never missed any of his movies.

Unfortunately, Robin Williams struggled with depression, a diagnosable mental disorder, which is prevalent in the U.S. and worldwide.  Some of the signs and symptoms include:

  • Feelings of hopelessness and helplessness
  • Loss of interest in daily activities
  • Anger and irritability
  • Loss of energy
  • Sleep pattern changes

A serious symptom of depression is suicide.  It’s the third leading cause of death among children and young adults ages 10 – 24.  Men take their lives nearly four times the rate of women, accounting for 79% of suicides in the U.S.  Over 90% of people who die by suicide have clinical depression or another diagnosable disorder.  If you think a friend or family member is considering suicide, express your concern and seek professional help immediately.  Also, get support from family and friends, even if your friend asks you not to.  It’s too serious to keep secret and you can’t keep your friend safe all on your own.

Sadly, there is still a stigma attached to depression and mental illness.  Many associate it, however wrongly, as a sign of weakness and don’t seek help.  Eighty percent of people that have symptoms of clinical depression are not receiving any specific treatment for their depression.  In fact, for every 33 children in school, one child will have clinical depression.

Robin WilliamsWe as a society need to step up and educate ourselves on this serious issue.  It is only then that we can support, encourage and advocate on behalf of children and adults with depression and other mental health conditions.

If you or someone you know needs help please visit or call:

1-800-273-TALK (8255) | deaf hotline: 1-800-799-4889
Mental Health America
National Alliance on Mental Illness
MIND

I agree wholeheartedly with Matt Damon, when he said Robin Williams “… was put on Earth to make people happy.”

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Are You Ready To Make A Difference?

Catchafire_CoverDid you know that you can make a difference in the lives of children with ASD and other developmental disabilities?  It’s as easy as writing or sending an email to your local or state representative, senator and asking for their support for funding or legislation that will ensure a better life for the person with the disability…and it only takes 5 minutes.

A good example of how you can make a difference is seen in ABLE (Achieving a Better Life Experience) Act, which was recently approved by the House Ways and Means Committee and has moved on to the Senate.  The ABLE Act would amend Section 529 of the Internal Revenue Service Code to allow tax-free savings accounts for individuals with disabilities that would not count toward the $2,000 individual asset limits that apply to the Supplemental Security Income (SSI) and Medicaid programs. Such accounts are now permitted for college savings.

The accounts could be used to cover housing,images medical, transportation, education and other expenses. The bill has been drafted to ensure the savings accounts would supplement, not replace, benefits provided through private insurance, Medicaid, salaried employment, and other sources.  To address cost concerns, the scope of the bill was significantly narrowed from the legislation that was introduced in 2013.  Among the changes are a cap on contributions at $14,000 a year, requiring that individuals open accounts in their home state or with a state which contracts with their home state, limiting individuals to only one ABLE account, and limiting the availability of ABLE accounts to people who acquire the disability before age 26.

Surprisingly, ABLE was first introduced in Congress in 2006.  Although it has taken this long to finally reach the Senate it was the persistence and perseverance of advocacy groups, parents and educators who continued to rally representatives to this cause.

photo2Another exciting example of the impact of advocacy efforts is the passage of the Autism CARES Act by the Senate.  The bill sponsored by Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY) and Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA) reauthorizes the Combating Autism Reauthorization Act of 2011 for an additional five years.  Since its original enactment in 2006, the law has advanced the science and practice in the autism field by increasing the number, scope, pace, and coordination of research, surveillance, public awareness, and professional training efforts.   The new measure will continue these efforts and includes a number of welcome changes: a name change that uses more respectful language, a designated ASD position in the Department of Health and Human Services to oversee the law’s implementation, increased representation of self-advocates and family members on the Interagency Autism Coordinating Committee (IACC), and requiring a report on the needs of transitioning youth.

So, how do you get the attention of your legislator?  I have included some resources to get you started.

As there are further developments with legislation I will continue to give you updates.

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6 Tips to Make a Smooth Transition from Summer To School

Ryan on his first day of kindergarten at Grandview Elementary.

Ryan on his first day of kindergarten at Grandview Elementary.

The lazy, hazy days of summer are soon coming to an end for our children.  Playing outdoors until dark, daylong trips to the beach, amusement rides at Waldameer Park will soon be memories.  These casual days with few demands will no longer happen once school begins.

For us at ELBS, our students’ first day of school is August 25th.  To help with the transition from summer to school, I’d encourage parents to begin exposing their sons and daughters to some of the elements of the school routine right now.

Some suggestions include:

  • Slowly begin to return to your traditional bedtime and morning routines even if it’s simply going to bed and waking up 30 minutes earlier.
  • Consider the type of demands that will be placed on your child the first week of school.  Would it be helpful if your child spent 30 minutes each day sitting at a table and working on a project?
  • If you child is going into a new environment, write a social story as a way to introduce a new building, classroom or teacher.
  • Schedule a meeting with your child’s teachers and support staff.  Give them and your child the opportunity to get acquainted.  It is helpful to provide a handout describing what teaching methods and behavioral strategies work the best for your child.
  • As a parent it is also important to prepare yourself.  The beginning of the school year can be an anxious and stressful time but it is essential for you to remain positive and calm, so that your child does not pick up on your anxiety.
  • Last but not least plan a fun activity in September.  Give your child something to look forward especially if they are anxious about the new school year.

If you have any tips for a successful transition please share them.  I always appreciate discovering new ways to make the start of school fun and exciting.  Enjoy the rest of your summer and the start of a new school year.

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