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Friday, December 7th, 2012
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.
Earlier this week the American Psychiatric Association (APA) announced the approved revisions for the May 2013 edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Among the revisions – the “Asperger’s Disorder” diagnosis will fall under “Autism Spectrum Disorder.” According to the Huffington Post, the purpose of the change is to “simplify [the] diagnosis.”
I remember when Norrin was first diagnosed with autism, the doctor told us to think of autism as an umbrella. And under the umbrella was: autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger’s disorder. During that first year of Norrin’s diagnosis, my husband (who was in denial) would tell people that Norrin had PDD-NOS. And I would think to myself – isn’t it all the same thing? But for my husband, any other name sounded better than autism.
At times I feel as if there is this need for distinction: high functioning, low functioning etc. Because for new parents, a straight up autism diagnosis is scary. And I think for some, Asperger’s is easier to accept. For parents who already have an Asperger’s diagnosis for their child, to have that taken away, for there to be no distinction within the DSM-5 – could mean having to go through the acceptance process all over again.
Or the change could mean nothing at all.
I honestly don’t know what it will mean to parents, since I don’t have a kid whose diagnosis may change. So, I thought I’d ask a few mom of kids with Asperger’s for their thoughts:
When I first heard about the proposed DSM changes, I was worried, of course, about what it might mean for my [12-year-old] son. He identifies very strongly as an “Aspie” and I could just picture that conversation. (“You don’t have Asperger’s anymore.” “YES I DO.”) I think the goal here with the DSM revisions was to say “autism is autism” and that makes sense to me. Asperger’s will stick around as a descriptor (or, in my son’s case, a self-identifier), but clinically speaking, it will simply be high-functioning autism. The main concern seems to be that some kids may currently be labeled with Asperger’s but do not meet the criteria for the autism label, and what happens to them? I don’t know the answer to that. ~ Mir
Looking at the new criteria, Zach [11 years old] still meets the threshold for an autism diagnosis. Honestly, I only think he was diagnosed as Asperger’s originally because he’s so verbal. I don’t necessarily agree with that because he has a younger brother who is also verbal, but officially diagnosed as LFA [Low Functioning Autism]. On any given day, the boys could trade the diagnoses the doctors have put on paper for them, so in our house, it’s all just autism. ~ Amanda
My daughter, who is about to turn eight, understands she has Asperger’s, and is quite open about it. She has been around kids with severe forms of autism and so for her the label of autism doesn’t resonate. I think she’s too young to understand the idea of the spectrum and the reasons for the DSM changes, so for now I will continue to refer to her as having Aspergers. My son only just turned four so time will tell regarding how this change impacts him, if at all. Based on the new criteria I don’t think he would have any problem getting an autism diagnosis. My Aspie daughter might not be diagnosed under the new criteria. ~ Sharon
My own personal feeling is this – so long as my child gets the appropriate educational services he needs, I don’t care about the diagnostic label.
The APA stated that the change will not impact special education services. But only time will tell. In a perfect world, if a child needs extra support – they should simply get it, regardless of the diagnosis. And I think that’s the bigger conversation that we as parents need to focus on.
What are your thoughts on the change? Are you worried? Do you think it will impact special education services? Or do you think “Autism is Autism?”
Categories: Autism, Children With Special Needs, Disability, Must Read, Special Needs, Special Needs Parenting, To The Max | Tags: autism, Autism Hopes, Disability, education, health, Learning disability, Lisa Quinones Fontanez, special education, Special needs
Friday, November 16th, 2012
myEdGPS is a new site created to help parents manage the sometimes confusing (and often overwhelming) world of special ed—and they’re looking for parents to test it out. They had me at “help” because I sure could use any tools I can get my hands on, especially when it comes to navigating IEPs.
The site lets you store IEP info, track milestones and keep a calendar of meetings. There’s also a “letter generator” to help you create Important Letters, like for when your kid needs a school evaluation. For a small fee, users can get live help from education advisors and advocates. Here’s a video:
The creator of myEdGPS, Adam Goldberg, has a masters degree in education and 15 years worth of experience as an education advisor. The U.S. Secretary of Education recently invited him to The White House to demo his creation—not too shabby.
For a limited time, myEdGPS is inviting parents to give it a test run; you can sign up here until midnight on November 21. Testers can use the site from after Thanksgiving till mid-January as often as they’d like, and give feedback on what they think. I’m sharing this because I think it’s a great, and very necessary, site; anything that can save me time (or grief) is A Good Thing.
Image of woman behind pile of binders via Shutterstock
Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max | Tags: education, milestones, myedGPS, school education, special education, What is special ed
Monday, November 12th, 2012
I recently came across this interesting infographic, and wanted to share it for any readers with twins (or if you’re just generally fascinated about what it’s like to raise twins, as I am). I had no idea there was actual legislation on this.
I personally think it’s a good idea to place twins in different classrooms; the two friends I know with twins have both done that, basically to help give each their own identity. But it sure does make for a whole lot of extra effort, from parent-teacher conferences to school trips.
Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max | Tags: education, Heath, infographic, school education, Twins
Tuesday, November 6th, 2012
How does inclusion help kids with special needs? As their parents, we know that; what may be less clear to other parents is how inclusion benefits their kids. Sean Adelman, an orthopedic surgeon in Seattle and advocate for exceptional kids, is here to spread the word. He and his wife, Susan, have three children, including one with Down syndrome. Adelman wrote the Sam’s Top Secret Journal series to show the similarities the lead character, who has Down syndrome, shares with other kids—and to explore how differently-abled people benefit society. (More than 25 percent of proceeds from the books benefit inclusion non-profits and/or charities for wounded soldiers.) This is what he had to say:
How does inclusion benefit everyone? Traditional thinking is that parents want inclusion for their special education children because that’s who it is supposed to benefit. As the father of a beautiful 16-year-old-girl with Down syndrome, Devon, I have learned that it’s not a “one way street” as has been traditionally espoused.
I would love to say that I used my deductive reasoning as a surgeon to figure this out. The truth is that I have learned this from my wife and all three of my children. Seeing how this has affected our lives it has occurred to me that there are at least five reasons why inclusion is important for everyone in the classroom. Here they are, in no particular order:
Role modeling. We should start with the obvious (not because of the title, either). Inclusion is good for the special education students. We thought inclusion was a good idea when Devon was little, mainly because we wanted her to go to school with the neighborhood kids. As it turned out, that was a good idea. Learning how to get along with her friends in a school setting is part of growing up. If you are not interacting with your friends and peers you don’t learn how to act/behave around others. The world doesn’t come as a contained classroom.
Diversity. Our society is diverse and children who learn not to be afraid of our differences are more accepting and more tolerant. Differences are not just in our appearance but also our abilities. There is a mutual benefit to integration; children exposed to the many faces of humanity grow up to be better, more well-adjusted adults.
Friendship. When we bring different kids together they can learn to become true peers. If the only knowledge regular kids have of the special education children is the “hi” in the hallway they don’t learn what kids of different abilities are really like. Our daughter likes the same music, enjoys the same sports, even likes the same boys (although as daddy I occasionally have some issues with that). They are more alike then different. Friendships are crucial to our social development and these are teachable moments that are very difficult to accomplish later in life.
Parents. Many times as parents we feel this anxiety that what our children our experiencing is unique to their abilities and/or differences. This anxiety can lead to decisions based on the fear that “we have to do something.” When our children interact in an inclusive setting we get a different perspective. An included parent is allowed to see that what our kids our experiencing is in fact what the other kids are going through. Knowing what is “normal” can help us to deal with the daily stress that affects all parents. For example, if we never learned that the hormonal imbalances that make all teenagers crazy was a normal developmental stage we would think our children needed a neurosurgeon and an MRI of their brain. That is not to say that parents of children with special needs don’t have unique needs, it is to say that by being in an inclusive environment it’s easier to see what’s “normal.”
Education. Although teaching to a classroom with many different levels can be difficult, we have found through the years that our teachers have been very appreciative. That is to say, all of the places where we have been in an inclusive setting the extra person who assists with the special education student brings another assistant to the classroom. It also can provide an environment where children can learn intangible lessons about assisting other students. Teaching someone else is an amazing way to gain a better understanding of the material. We often find that the techniques we learn to help children with learning disabilities can be very useful to the other children in the classroom.
The common theme through all of this is that our world is a diverse world. We can’t play chess if the only player we know is the Rook. If we learn all of the players, embrace their strengths, and learn their weakness we can become something amazing. Playing, teaching, parenting, and helping without regard to who we are, what we look like or how we speak is what we should all strive for.
Thursday, June 7th, 2012
This guest post is from Lyn Pollard, a mother of two one-of-a-kind kids who learn and play differently. She writes, blogs, talks, and tweets about parent advocacy, literacy, and safe schools for children with learning differences, disabilities, and special needs on her blog at Different Doodles and @DiffyDoodles on Twitter. A trained journalist, former change management consultant, and serial entrepreneur (ChalkyDoodles.com), Lyn is working to create change and remove stigma for all kids with differences. Here, she shares
How would you answer if, say 10 years from now, your child with learning differences, autism or special needs asked you, “Mom, what exactly did you do to help me?”
Isn’t that what we all secretly dream of? For our children with special needs one day to not only fully benefit from the advocacy we undertake on their behalf, but to express a vested interest in the journey that we, as parents of one-of-a-kind kids, couldn’t (and wouldn’t) have taken any other way?
As the mother of two kids with differences (my daughter has dyslexia, dyspraxia and ADHD and my son has high-functioning autism and is gifted at Math) here the top 5 answers, that I hope will (someday) make my kids proud:
1) Understand your child’s differences and protect their rights: Advocacy 101 for parents of kids with differences & disabilities. Pretty much the moment we receive a diagnosis, parents dive into learning about their child’s unique condition, be it due to a developmental delay, congenital condition or the result of an injury.
This is an important, instinctual first step that immediately helps us know what we are facing and what to do next. This may include understanding not only your child’s condition, but how to work with your health care provider or insurance company to get your child the care and/or therapy that he needs.
The vital second step is to gain a basic understanding of federal and state laws that protect your child with differences. For example, one of the first things I did after receiving our daughter’s dyslexia diagnosis was to read the Texas Dyslexia Handbook, which describes in detail our state’s law regarding dyslexia treatment on all public school campuses.
Other laws to know: IDEA and 504. Parent-friendly resources Wrightslaw.com and LD.org are great at helping parents decipher the laws and get the facts.
2) Make your child’s school a Safe School for all kids: For kids to learn and grow, their school must be a place where they feel accepted, accommodated and most of all, safe. Did you know that kids with differences have a greater than 60 percent chance of being bullied on their school campus (according to the National Center for Learning Disabilities)? As parents, we should be involved with keeping schools safe for all kids by knowing our state’s bullying laws, and making sure they are being enforced on our campuses.
Does your state have an anti-bullying law? (To learn more about your state’s anti-bullying law visit Stop Bullying). Does your ISD promote and adhere to it? How does your campus enforce it? Is there info about it on your ISD’s website? If not, why not ask for it?
Other elements of safe schools include making sure children with emotional or mental health issues are given appropriate help and support. Also, ensuring that children with learning differences receive the appropriate special education and/or modifications and leaving stigma at the door are part of the equation.
3) Ensure everyone on your child’s campus understands and accepts people with differences: Talk to your counselor, principal or SLP (SLPs in my Texas ISD are usually the case-managers for children with Autism spectrum disorders who are protected under IDEA) about how students and teachers are being educated about learning differences and special needs in your school district and on your child’s campus.
Do you have a child with a recognizable disability, like Down Syndrome who shares a mainstream classroom with typical kids? Ask if you can read a book about your child’s differences to his class at the start of each school year, like the mom of a boy in my daughter’s class does each fall.
Take every little opportunity to teach the kids, school staff and administers you encounter on your child’s campus about diversity. Read books, sing songs, have conversations and continually focus on how people who seem somehow different are in fact unique, special and worthy—just like everyone else.
4) Encourage your community to promote acceptance and diversity: As I’m often reminding my son, “Observe.” Look around you, and listen, too. Do parents and other adults in your community use words of acceptance when they talk to or about others? Do they use the “R” word or racially derogatory language? Are they actively singling out kids from sports teams who are awkward or clumsy? Or are they inviting the child with autism or Down Syndrome to join their team (like my son’s coach has done the past 2 years)?
Align yourself with parents who embrace similar values, and encourage them to help you approach parents who are not modeling appropriate behavior on the field and in the community.
5) Don’t let your advocacy stop with your kids: You’ve probably picked up some great skills as a parent advocate for your child with differences. If you’re like me, you’ve learned to be both proactive and patient, persistent but professional.
Now put those skills to work beyond your own offspring. Reach out to parents in your community, start a support group (like the neighborhood group I started last fall, KDDs – Kids with Differences & Disabilities), attend IEP meetings together, approach your school administrators, local newspaper and state legislators. Ask for the changes that you want to see in your school and your community, and ask with a loud, educated, consistent voice.
Like our mothers used to say, “If you don’t ask, you won’t receive.” Parents of kids with differences have an amazing amount of power, and that power grows exponentially when like-minded parents join together for a cause that is not only worthy, but about which they are passionate to their very core – the education, health and safety of not just our kids, but all kids.
From my other blog:
• My child with special needs is not a burden to society
• A Bill of Rights For Parents Of Kids With Special Needs
• Top 20 reasons moms of kids with special needs ROCK