5 Minutes for Special Needs | Circa April 29, 2009

5 Minutes for Special Needs


Biology Lesson

Posted: 29 Apr 2009 01:00 PM PDT | Newsletter

Mother Nature left a biology lesson on our front porch this week, and I decided it was time to discuss the birds and the bees with Ashley – well, at least the birds.

A house sparrow built a nest in a grape vine wreath that hangs on the brick wall of my front porch. I kept noticing that every time I opened the front door, a bird would quickly dash away. I checked the wreath and found a nest and three little blue-tinged eggs. After going back into the house, and waiting a few minutes, the mother bird returned to her nest and settled her round little body over the eggs. I was so excited that I went immediately to get Ashley.

The first thing Ashley and I did was to get her children’s encyclopedia and look up birds. We found a great picture of a bird beside a nest of eggs, a perfect prelude to our trip to the front porch. After discussing the pictures in the encyclopedia, I signed to Ashley that we were going to see a real bird and nest. She was very excited!

As Ashley and I walked to the front door, I kept signing ‘quiet’ and ‘sshhh’. She was so cute – she was almost tiptoeing! We very quietly opened the front door and stepped onto the porch. Quiet is not something Ashley does often, so this was quite an accomplishment.

We were actually able to get very close to the wreath, close enough that I think Ashley could see the mother bird. She was so excited at that moment that she let out a little squeal and the mother bird flew away from her nest. Ashley was surprised and looked at me almost like she had done something wrong. I signed that all was ok and that we were now going to look at the eggs.

I helped Ash step up on the bench we have on the front porch, and she peered into the center of the wreath to see the eggs. She smiled and signed ‘egg’ over and over. She then showed me the sign for ‘3’, the number of eggs in the nest, followed by the sign for ‘blue’. As I helped her down from the bench, I told her that we needed to go back inside so the mother bird could come back to her nest.

After standing quietly just inside the front door, the mother bird returned in less than a minute. I told Ash we needed to let the mother stay with her eggs a while, and she immediately went back to her book and looked at the bird picture some more. When I sat down next to her, she signed ‘thank you’.

The lesson and my day were complete…

Deborah can be found writing here at 5MFSN every Wednesday, and can also be found at Pipecleaner Dreams.

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Some Thoughts as Autism Awareness Month Comes to an End…

Posted: 29 Apr 2009 09:00 AM PDT

The month of April is coming 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 are fractured. Broken.

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?

no.

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?

Shash can be found writing here at 5MFSN every Wednesday, and can also be found at Diary of a Crazed Mommy.

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