I don’t know if telling this story will date me, but I guess it doesn’t matter that I grew up in the sixties. I remember as a child, that song and story about Puff the Magic Dragon. The special friendship he and Christopher Robbins had together, but then the boy grows up and Puff hangs his head and cries. (Or was that Tom Dooley and Winnie the Pooh? LOL) Anyway, my kids have been best of friends since the beginning of time and long before that. My daughter, Carmen, and son, Jesse, have a sort of love for each other that I pray every day never ends. They even have a secret language and I often hear them babbling away together and cracking each other up with their private jokes. My son looks at his sister and her funny little ways and I can see it in his eyes that she brightens his day, and he her’s.
In just the last couple of years, this has been a growing concern for me. They are getting to an age where most siblings just can’t tolerate the sight of each other. Luckily this hasn’t been the case in my home, but I see something else occurring. My daughter has been developing in a more sophisticated way than my son. Her speech has greatly improved, her social skills are growing in leaps and bounds, and she is succeeding in general ed classes.
I am sad to say that in some ways, she is leaving her brother behind.
We started off this summer with very high hopes and a fresh outlook on life. My friend of over 12 years was moving out to Colorado from California to help us with starting our self-sustaining farm. For the past 8 years or so, we have been dreaming of getting this started, but we have been either too busy supporting the family financially or with taking care of the kid’s needs. To do both of these we needed to be living (at the least) 100 miles away from our property. So when my friend said she would come out, live on the property and get the work started, I thought this was an ideal opportunity, and funny enough, a chance for a less isolated life.
Things often don’t go as smoothly as you would expect, however.
It proved too much for her and her family to live on a piece of land (in the middle of nowhere) that had been all but forgotten for the last 5 years and she decided to stay in my home with her two grown kids and five large dogs. I was foolishly ok with this. I mean, how much chaos could this cause in my home? The home in which I live with my two Autistic children and my husband. Oh did I mention we live in a two bedroom home?
Let’s just say, this was doomed from the beginning.
I think that even if my kids were neuro-typical, it was only a matter of time before there would be some sort of explosion after which everyone would kiss and make up. The only difference is that I am an ASD Mom. You seriously don’t mess with ASD Moms, especially a seasoned ASD Mom.
My kids were both diagnosed at age three, and are now ten and nine. I have many battle wounds and other various bits of shrap metal under my skin. I’ve had family members and other NT mom’s try to tell me how to better parent my kids. There have been doctors, people shopping at the market and bus drivers suggest to me that if my kids can’t behave in public like “normal” kids, I should keep them at home. I’ve had every decision I’ve ever made scrutinized by every kind of person imaginable.
We went on an extended road trip with kids. hmmm? Not bad. Better than I expected and better than it has been in the past, but kids on the spectrum are not really spur of the moment, go with the flow types of kids. They need to know what is coming next, and that is something my husband and I are not really good at. The kids both kept saying something really “normal” for 9/10 year-olds. “Are we THERE YET?” and “Can we go home now?” Strange how I have never imagined I would want them to be less “normal” for once.
My husband and I often refer to our days together “before Kids” or BC. We spent a lot of time being vagabonds, traveling and exploring. He is a photographer and I am a writer. So we would sit for hours, he taking pictures and me writing or reading. We also moved to a wonderfully scenic area of the country and have often attempted to continue this way of life, with kids in tow. But it just hasn’t worked out in this way.
I remember one time, around the time the kids were first diagnosed. We visited the very beautiful city of Moab, Colorado.
In a previous blog I told the story of how it felt when my young daughter with Autism disappeared. Today I want to present a continuance of that very important subject and some related subjects.
For any parent, the fear of their child wandering off is intense due to the obvious dangers that face a helpless child on his own in the cold cruel world. It is even more so for the parent living with a child with Autism. Children with Autism sometimes have the propensity to wander, but the protocol for locating them needs to be handled with specialized methods and care. These methods may vary greatly than those of a child without Autism.
The experience can be, not unlike that of a parent of neuro-typical child who may have wandered off, deeply distressing with the impeding thought of harm coming to their child. It can also be exasperating when law enforcement responds to the parent in ways that are not so empathetic to the parent’s situation. Thus making the event even more stressful. I will share a story now: but try to remember that a parent of an Autistic child already has deep imbedded feelings over the safety of their children going in to overcome the following scenario.
Lessons Learned From the Kids with Diverse Abilities:
I say diverse abilities because one thing that I have learned from working and playing with children and adults with developmental disabilities is that they understand more than neuro-typical children and adults do. You may understand if you’ve ever heard the phrase “Dance like no one is watching,” and if you crave the freedom and joy that behaving that way can bring.
They live their lives like no one is watching. They may not even have the ability to sensor their thoughts. This really brings a sense of freedom and joy that no one else (I know) can truly understand. It is the rest of the world who has a problem with what a child like this does and says. If society could be “okay” with this, than they could be “okay” with truly BEING authentic with who they are. These children taught me so much about being authentic and not worrying about what other people see or think. It was years later, when I became a mother again, that I realized just how much they taught me.
I know that this blog is about Aspergers and Autism but I think my job here is also to help people make connections in their life experiences, and how they can relate to other people’s lives. So I will begin with this story.
Lessons Learned From Gang Kids:
After the arrival of my eldest son and finding myself as a single mom, I decided I needed to go back to school and get an education. When I was in High School, no adult had ever made me feel that an education was an option for me. In fact, my guidance counselor advised me to seek out a trade school or business course such as bookkeeping or typing. I explained that I wanted to become a psychologist or a counselor and he would always comment, “well, that would take a lot of years of college and quite a bit of tuition.” This was a conclusion he did not make from my inability to learn or my aptitude for empathy for others.
My family, from back since when I was a kid, often didn’t have money for presents. Sometimes we would hand-make presents, bake goods or make coupons for favors like “I will make your bed for a week” or “Do your chores.” One Christmas we didn’t even know if we would have electricity…much less a tree. A nearby tree lot donated a tree to us, they even dropped it off at our house, after my little brother went over and gave them a sad-faced orphan look. Many Christmases were just like this.
One Christmas Eve, we sat in the dark and just told old stories about our family origins and more recent memories. Each of us also wrapped up that ‘something special’ that we wanted our loved one to have. To this day, it is still the best Christmas I can remember as a child. Today with my own children, I find it is better to just keep it simple.
Just recently I was given this scenario from the Doctorate program from which I am attempting to earn a specialization in Special Education. Let’s imagine, if you can, that You are the Director of Special Education and a family has just moved into the school district. In this scenario, the parent has asked for his child to be tested for possible special education services due to reading difficulties. The elementary school principal has told a parent that his child does not need to be referred for testing since the school is utilizing the Responsiveness to Intervention Model (RTI). The parent, as reported by the special education teacher, is very upset. The student has had difficulties with reading for a number of years. This is the third time a parent has requested services and both the principal and reading interventionist have refused to allow the special educator to start the referral process.
As a parent of children on the autism spectrum and as a professional working with children and parents of children with special needs, it is an interesting and pertinent scenario to explore. Not only for the sake of understanding you and your child’s rights under the law, but to better understand the foundation of the education system and where it seems to fall short.
The following will be discussed: the legal issues that are involved when assessments are requested and denied; the support that should be provided to the special education teacher; and what training should be provided to the principal.
Some days I wake up and feel truly blessed. I mean it. When I look back on the early days, I remember being so very overwhelmed. These days, those kind of days, are few and far between. If I could tell my younger self a few golden words of wisdom, I would tell her: “You Got This!”
At the time, it felt insurmountable. It felt like a bad joke that these littles were placed into my care. Like there were so many other factors that made my life difficult, why would God want to put them into our lives. Well, I guess it was so I could grow. A seed grows better with a little manure.
I remember times when my kids would have meltdowns in the middle of the market.
There is a lot of heated debate going on right now between, what some are calling the Vaxxers and the Anti-Vaxxers. These two opposing groups both have very valid reasons behind their argument. The basic picture is simple: Despite over-whelming scientific consensus that the measles, mumps, and rubella (MMR) vaccines do not cause autism (Shwed and Bearman 2010), many people believe otherwise. Many “Vaxxers” have expressed the opinion that “Anti-Vaxxers” are deluded and irresponsible in their decision to not vaccinate their children. I, on the other hand, am in a very precarious position. My husband is a true Anti-Vaxxer whereas I believe that there is Oh, So Much More To The Story than vaccines that simply leads to the symptoms of Autism, but I can understand both sides.
The whole thing with this debate has a enormous amount to do with how much the public can trust Big Brother. (Oh yes, she did say that!) Now, Big Brother is really just the modern day ‘Boogie Man’ but there are valid reasons why it is so difficult for many to just take the word of any organization under government endorsement. The CDC has been under question for years, the FDA has consistently been under scrutiny over poor decisions that have put our health in jeopardy, and so has science in general. Now remember, I’m not one to try to persuade anybody to one belief or the other, I’m just here to explain why some parents have made a conscious decision to not vaccinate. If we address the “why” instead of persecuting the parent, than we can perhaps make a change with the way things are being done. Because when it comes down to it, we all just want what is right for the wellbeing of our children.