From the Inside…A Mother’s Perspective on ASD.

Kristina

Welcome our guest Kristina to LKFOA!!

I have known Kristina and her children for several years.  When I embarked on this mission to bring together individuals to discuss not only Special Education but ASDs, I instantly thought of her.  Kristina is a married mother of three, a ten-year-old and three-year-old daughters and her nine-year old son.  He is diagnosed with classic autism.  “He’s considered nonverbal, although he has a few words and uses verbal approximations and modified sign language to communicate.” mom writes.  Like most families with children on the spectrum, Kristina writes that Autism affects every decision they make and it affects everything “from our relationships with each other, to our finances, to our plans for the future.”  She and I know too well that when you think about raising a child or children on the Spectrum, you have to think about everything from living with your child from the age of 21 forward when school is over, home modifications if needed, and retirement and if it will ever happen for you.

Like many parents, she did not know much about autism before her son’s diagnosis.  “There hadn’t been any history of autism in my family prior to my son’s birth, and I didn’t have any personal experience interacting with people with autism.”  Like many of us when we heard the diagnosis, you instantly think of Rainman and Kristina is not any different.  “…, I had that impression of Dustin Hoffman’s character in the back of my mind as being representative of someone with autism.”  She thought as I thought that all people with autism were sensory avoiders and didn’t like affection.  Her son like my son loves hugs, he’s a sensory seeker, and loves hugs.  Like many of us that are touched by the disorder, we have found that each child is different and “have their own personalities and idiosyncrasies just like anyone else.  As the saying goes, if you’ve met one person with autism, you’ve met one person with autism.”

When her son was diagnosed, Kristina feels that she received accurate information from her son’s medical team.  She was already seeking speech therapy and occupational therapy services for her son both privately and in school, but she was encouraged to seek out Applied Behavior Analysis(ABA) therapy.   This year is her son’s third full year he’ has received ABA through South Carolina’s Pervasive Developmental Delay (PDD) Waiver and he like my child will no longer receive ABA after this month unless her family can figure out a way to pay for it.  Kristina writes “…, and I’d recommend it to any parent with a new-diagnosed child.”

Like many parents, which I can relate to this, friends come and go.  Kristina feels that it’s not that you lose friends, but “…no longer being able to relate to them, or vice versa, because of the challenges inherent in having a child on the spectrum, especially on the more sever end of it.”  Things that we take for granted as being simple can turn into a difficult task given when our children are involved.  Kristina admits that due to the chances of a “public scene due to a meltdown” there was a period that lasted for years where she felt as though she was trapped in her own home.  “…going out with him was so much work, and I feared the possibility of those public meltdowns.”  For her child and for mom, things have improved as he has gotten older and mom credits the therapy that he has received.  As we all know, autism does not go away and her biggest fear is the possibility of him wandering away one day.

Kristina’s hope for her son is that he one day will be able to carry out his own personal hygiene and acquire self-help skills so that he can be a “contributing member of the household.”  She knows and understands that he will never be able to live on his own but hopes that he will get used to change so that he can go on outings without getting upset that plans change.  She wants him to be a self-reliant as possible because he may one day have to rely on strangers for his care and like many parents she is terrified about this.  In terms of advice for parents with new diagnosis, “I’d advise a parent to make sure their child receives Early Intervention Services, through an agency such as Easter Seals, so that their child’s development can be monitored.”  She also succeed that if you are in the State of South Carolina, to contact the Department of Disabilities and Special Needs “inquire whether there are any waiting lists for waivers or other programs that their child should be placed on.”

Like many parents, she has fantasized about a cure many times.  She feels like some experts believe “that autism is caused by a combination of genetic susceptibility and environmental trigger(s), but what genes are involved and what those triggers might be remain a very great mystery.”  We both hope that in our lifetime a cause and cure may be found for future generations.  In closing, Kristina would like for you to know that “My son has severe/classic autism, but he is affectionate and loving and in so many ways a joy to behold.  Everyone who really gets to know him ends up loving him.  He’s a sweet, good-natured boy, and I’m so proud of the progress he’s made and continues to make.  Each year he can do more than he could the previous year, and every one of his accomplishments, no matter how seemingly minor, is a victory for him and, therefore, worthy of the greets celebration.”  I agree Kristina because some progress is always better than no progress.

Com/mu/ni/cate

              Today’s Post is by a good friend of mine!  Welcome Lyssa Sahadevan!

lyssa

         A teacher friend recently asked me for some tips about working with parents. She will be teaching special education in the fall and is really looking forward to it, though nervous. I started by telling her that she had already had the first thing parents look for….passion. As a parent, that is what I want and expect of my son’s teachers. As a teacher, that is what I try to embody in everything I do.

Here are a few of the other tips I shared. Though my experience in special education has not spanned decades, I stand pretty strongly behind them as best practices!

1. Start the school year with a conference….a happy conference. Meet the parents, review the IEP together, ask questions about their child. Consider it a “fact finding mission!” In a perfect world, we would be able to do this with every parent!

2. Be honest but kind. Keep data and keep parents posted. Send notes when behavior is not great, but also send notes of celebration! Reread notes to parents or have a peer read them for a “kindness check.”

3.  Ask. If you are not sure about something (like one of the 1,000 acronyms!) ask a colleague or the child’s parent. It is ok to not know everything!

4. Be timely. If a parent reaches out to you, respond. You do not have to have all of the answers right then or accept a request for a conference on the same day, but reply quickly. No one likes the waiting game, especially when it is about their child!

This list could go on and on, but the bottom line is communication is the key to a successful parent-teacher relationship…special education or not.

As a teacher or parent, what would you add to the list?

My Mommy Reads

Lyssa Sahadevan blogs about all things family and learning at My Mommy Reads. She is mom to a preschooler, first grade teacher to 21 smarties, and an advocate for all things children! She is a former teacher of the year and currently serves as an advisor for Scholastic’s Instructor Magazine.

 

Autism Awareness Everyday 2

So last night I stopped at the same gas station that I stop at every Saturday and Sunday night after work and go into countless days out of the week.  I see the same attendant, a nice lady that giggles at my choice in purchases, apple juice and a slim jim and we chat a little and I move on about my way.  So last night something remarkable happened, I think it’s remarkable.  I was wearing this T-shirt:

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Of course I wear this shirt often, but she looked at me and said, “You need all the help you can get.  I applaud you.”  So why is this profound?  Normally when people see me in this shirt, they apologize to me as if they had something to do with my children’s diagnosis.  They don’t realize that not all people want an apology for the cards that were dealt.  I responded to her “Yes I do.”  I believe I made a joke about tequila, it was after midnight and I was just trying to get home.

So many times a day, I find myself in situations where people ask me about my children and I proudly tell them about how my children are doing and what they are doing and how smart they are, then some people realistically don’t ask at all.  The numbers now are 1 in 68.  If your life has not been touched by it yet, it will be.  Now with the data moving forward about so many different things going on inside the brains of our children, I am hoping that one day we can help children that show signs early.  I know that this might not help my children now, but I have often wonder, if they had the opportunity to be cured, would they want it and of course I asked my son and daughter and they both said no for varying reasons.  My son said “Normal is boring.”  My daughter said “I’m good.”  This makes me feel like I’ve been on the right path focusing on how to help them adapt instead of focusing on what caused it.

This is my post for today.  People in the most unusual places say the things that make you think about how people see parents like myself and our kids.  This young woman looked at me with a different set of eyes last night.  A set of eye that if I had not of had on the shirt, she would not have known.  She would not have known what was going on in my world.  I would have just been another stranger walking into her store which brings me to the thought process that sometimes I don’t have to be the person spreading the awareness, others spread the awareness to me that they understand the struggle.

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Words of Wisdom- Autism Evolution

I was supposed to post this yesterday, but life happens right.  Well, this week, I have had to give people words of wisdom when it comes to my son.  “Just Go With It!”  My son, my dear sweet sweet boy, is having a difficult time right now.  We have experienced a great bit of regression.  His self-help skills are coming back, but now we are struggling to get through a school day without getting too terribly emotional.  On top of this, he is a “ladies man” and he will tell you this and we have had to come up with new mantras to keep him from blowing kisses at girls, asking for phone numbers, and writing notes in class.  Yeah, my ten-year old socially awkward Autism baby did that this week.  Autism is an evolving creature.  I often repeat that once you have met once child with autism, you have met one child with autism.  No two children have the same characteristics even though they may have the same diagnosis.  When I think I have it figured out, it evolves again and I scramble to catch up to the new adaptation that I’m seeing. It is almost as if my son’s brain and body can not handle too many things at a time.  We struggle with remembering what he’s supposed to do when he’s toileting.  We struggle to remember what he’s supposed to do when he’s in the shower and when we get these two things under control, we forget social etiquette at school.  I was once told by an older woman when she observed my children and I on a family outing one day, “Just think, as they get older, it gets easier.”  I wish that were true.  I would not be doing a service to parents with children on the spectrum if I didn’t tell them that as they get older you have to contend with so many other things and it gets harder.

I have faith that one day, Autism will be just an underlying part of my son and he will be able to control the stems and the clicks, and the verbal spewing of sounds that flow out of his mouth.  But for today, he is who he is and I’ll just continue to run to catch up.

Autism Awareness is Everyday.

“Oh there’s nothing wrong with your kid that a good spankin’ won’t solve.”

“Give him to me for one day and I bet he will come back a different child.”

“All I ever hear on your Facebook page is about Autism, you should change the subject sometimes.”

“I just don’t understand what you’re talking about, your kid looks normal.”

The month of April you will hear news reports and read newspaper and magazine articles about Autism but the statements above, families with children on the Spectrum have heard time and time again. 1 in 68 children will be diagnosed with autism. That is a staggering number and many American’s that did not grow up with Autism in their backyard like today do not understand. Where America recognizes Autism Awareness month as the month of April, Autism Awareness in households like mine is every day. It’s about educating people everyday and looking at how far you have come and how far you have to go for your child(ren) to be functional. More and more we are hearing of families with more than one child on the spectrum, where most people did not think that existed years ago. It does in my home any many other homes around the USA.

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I am not writing this post for sympathy. This is my life. This is what I live. I am in a great place with my children, where as in 2005 when my journey began, I couldn’t say the same thing. So this April, I am dedicating my blog to Autism Awareness. You will from educators and parents and even my son about what it’s like or what they do. Hope you enjoy this Month and the words that will be on my page.