Tuesday, May 19, 2009

Why Can't I Teach My Child Self-Control?

the following is post from my personal blog, dated two years ago.

Trying to teach any child self-control is tough. When you are dealing with a child with autism, there are added challenges. It isn't that they can't learn, they do. It's just that with autism, often learning takes the form of rote scripts that are hard to apply to situations that deviate from the taught scenario. The ability to adapt just isn't there. I tell you this so that I can tell you this story.

Last night, J and I wanted to go out. We don't get a lot of opportunities to do that, because even though I have given birth to the World's Most Responsible 14 Yr Old, let's face it, leaving her in charge of two younger kids with autism is something to question. But last night, my littlest one said that J and I needed to go out. You need to understand that she was falling apart earlier, not so much in a catastrophic way but more in a "I am really whiny and complaining about everything" way. The Wii can do that to all of my children. Hell, it can do that to me!

JBean was trying to convince me that we needed to let them stay home. We were planning on a late movie, so there would only be an hour that the kids would be up. JBug puts them to bed for us. To assure me that I was making the right decision, JBean said:

"Momma, I can do what they taught us in Sunday School today... SPUD.
I can control my self!"

Most parents would be thrilled by this. Instead I took it to heart as my failure. When you homeschool, everything is your fault. I said to to J, "I have been trying to teach her this stuff for years, and she picks it up in five minutes in Sunday School? Maybe I need to send her to school to learn, because she isn't getting it from me. I'm failing." He looked at me and said, "She got it today because you have been going over controlling herself over and over again. Repeat, repeat, repeat. It clicked because of you." My eyes filled with tears, and I spoke..

"That was the right answer."

T, who takes it all too personally

Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamom LA Special Needs Kids Examiner at Examiner.com and her own site, Send Chocolate reflects her passion for her children and autism. She is the founder and editor here at Autism Sucks.
Reblog this post [with Zemanta]

Wednesday, May 6, 2009

Let's Talk about Autism and Homeschooling and ..Craziness

Hey everyone! Today I am appearing on Special Needs Kids Talk Radio, so come check it out! 10 a.m. PST and 1 p.m. EST (noon, CST). We are going to talk about autism, homeschooling and what it's like being the "odd one out" in my family. You can listen by clicking on the link, and then the little special needs square takes you to the show. If you register, you can also chat and ask questions for me to answer on air. Come and listen!

From the website:

We are talking to Tina Cruz today about homeschooling her 3 kids and being the only "normal" person in her household, which makes her the strange one. Tina has a great sense of humor, despite her trials and tribulations

This is the first time I have done this, so let me know you are listening. I am terrified bewildered nervous!

T, who hopes I don't stutter and say "uhm..." a lot

Tina is a writer, wife and mother of three children. The two youngest children have high-functioning autism and the oldest has undiagnosed Asperger's Syndrome tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is editor and creator here at Autism Sucks. She is the editor of the Special Needs channel at Typeamom, LA Special Needs Kids Examiner. Her personal blog can be found at Send Chocolate.
Reblog this post [with Zemanta]

Sunday, May 3, 2009

Some Thoughts on Autism Awareness Month

The month of April has come to a close, and with it ends Autism Awareness Month.

However, so many of us don't have an end to Autism. It is an ongoing, daily struggle filled with accomplishments, setbacks, discoveries, joy and pain. It is a journey, and the topography changes moment by moment. However, it is filled with the most wonderful people you could ever come across.

But we as a community are fractured. Broken. Divided.

Split along lines that should not be there; dividing a group that needs to band together to help our children and our friends and family members gather hope and strength to face our special brand of challenges.

To help us weather this storm.

Here are some things I would like the Autism Community to really think about and consider making changes to in the next year:

  • Start thinking about what the future holds for our children on the Spectrum.

    Our focus has been laser-like on the birth-to-three side of the disorder, and you will hear no argument from me that early intervention is key; but in our haste to put all of our eggs in one basket and cure! recover! heal! we have overlooked a large group of children on the spectrum that still need assistance - the Adults. All of these children grow up to be adults, and as they age, the assistance gets less and less. The transition from young adult to adult is equally as important to a child on the spectrum as it is for that same child during early childhood. We need to remember to look at their lives as a spectrum as well, and provide assistance throughout their entire lives.

  • Acknowledge that not all children can be "cured" of Autism, and that most are not.

    This is what is fracturing the Autism community and giving false hope to parents. I am not Jenny McCarthy, my child is not "cured", and many of us need to be okay with that. My son is a teenager, and while he has grown by leaps and bounds, he still has challenges that will plague him the rest of his life. We need to be okay with the thought that this is a process. I tell my friends that have read Ms. McCarthy's books (I have as well for purposes of full disclosure) that I would like to see what she has to say in a few years when her son gets older. I think she will find that the "cure" she spoke of in her books is not the permanent one she was hoping for.

  • That money has been funneled into the wrong areas for far too long.

    Many parents, myself included, are tired of hearing that more money from Autism charities are being funneled into discovering how this happened and which additives in vaccines caused this. Should we "Green our Vaccines"? Absolutely. Should we change the schedule? Probably. Should we be the only group saying this to the world at large?


    We need to find another soapbox that fits the needs of ALL of our children on the Spectrum, not just the ones who get the most air and face time. Not just the younger ones.

    If you are going to Rescue an entire Generation, it helps to make sure you include everyone, no?

  • Start building a community; one that serves ALL in it.

    I had the pleasure recently to spend time with a group of kids and their families that cancer had touched in some way, shape or form. What struck me deep in my heart was the bond these people share, the closeness, the support. People from all walks of life, celebrities, sports heroes, all donate time, resources and money to support and care for these families in this scary, rough and expensive time. And they keep on giving and many pay it forward after they no longer need as much help. The Autism community has nothing like this, and quite frankly it breaks my heart. If we had had even one-tenth of this amazing resource to help families share, bond, get assistance, and gather strength and hope; it would be amazing. If this help is available to us currently, it more than likely has strings attached. Strings of "cure".

  • Remember that we are not perfect, and that there is so much to learn.

    Take a class. Listen in on a Webinar. Read. Discuss. Tell your story; don't be afraid or embarassed. We need to learn from each other. We need to spread the word. Autism and Spectrum Disorders are relatively new to the world vernacular, and we need to raise awareness. That being said…

  • Don't scare people by sending frightening messages related to Autism.

    Don't equate Autism to a plague, or a horrific act. Someone who I follow on Twitter sends out messages about Autism that only confuse and frighten people. Scaring people into learning about Autism only mixes our message even further. There are many people who are coming forward and revealing that they have ASD and grew up during a time when many had no idea how to work with people who had Autism. Their stories are inspirational, and we need to pay attention.

  • Appreciate how far we have come…

    Autism has had more air time in recent months than in previous years. That's a good thing. The fact that there are services for our children, therapies and interventions to help our children grow and function in society is something to be proud of. The accommodations in the schools and the support staff to help our children has increased three-fold. It's wonderful to see.

  • …but remember we have so much further to go.

    We need to do more. We need to ask for more. We need to demand more. We need to ask for more services. We need to build an infrastructure to support our families who have no idea what to do or where to go when they are just starting down the road. We need to help those still struggling down that road. We need to work with the medical community to build a stronger protocol to get testing and services for our children earlier than second grade.

  • So let's get together and feel all right.

    Let's get together on our global message and remember to include everyone, not just the people that fit a particular (cured) category. Let's work together to spread the collective word that while some children see great improvement with different interventions; let's remember that one size does not fit all, and we need to look at the bigger picture for our children. The lifetime picture.

    So, same time next April then?

crossposted on 5 Minutes for Special Needs Shash is a mom of 2 boys, one with Asperger's Syndrome and one we're not sure where he'll land on the spectrum. You can find her tipping at windmills as a Teaching Assistant in an Elementary School. Shash also writes at her home blog, Diary of a Crazed Mommy.