When I became pregnant with Caitlin, over 19 years ago, I knew that I had
been given an amazing gift. At the age of 30, I was going to become a mother
and I knew my life would change forever....I had NO idea of the journey that
was about to happen in my life....
19 years and 5 more children later....my journey continues.
Caitlin will be 19 years old next week. So, for the last 19 years, I have parented
a child with Autism. Well, make that...I have parented 6 children...5 with autism.
Was it easy.???
NOPE...parenting is hard work.
This morning, as part of my morning ritual, I read AoA and JB Handley's blog on
how hard it is to be a biomedical parent.
This is part of what he wrote:
Soon after my son’s autism diagnosis, my wife and I were receiving advice from a DAN! Doctor helping our son. Transdermal glutathione and something very smelly called TTFD were prescribed, and we were told to rub each of these creams on his skin every night. “How long do we need to do this for?” I asked. “Six months, maybe a year,” came the doctor’s reply. “A year? Are you kidding?” I couldn’t believe it, what an inconvenience! Those of you who are biomed veterans are already smiling. Five years later, I see the world a little differently, and I have this to say to all parents battling autism: This job of recovery ain’t for the faint of heart.
Okay...first off...
six months to a maybe a year...
I think it has been way longer than that JB !!!!
And you still trust this DAmN! doctor...???
Cream on the skin...???
Whatever !!!
Parenting my children has not been easy, but man, I would not trade one minute.
I have children who have come from non-verbal to excelling in school and in life.
Our children have extracurricular activities that NT kids have.
Our youngest, who is still non-verbal...yet, very opinionated, is thriving in regular
education classes due to the fact that he has devoted teachers and therapists who
expect nothing but the best from him.
I do not know what the AoA crowd expected when they were preparing for the birth
of their children.
If they were expecting the homecoming queen or the football king. The next president
of the United States or the next Man in space...
But, what I see is that it is not about their child, but how they are perceived with their
child.
Recently, I read a post about a mother who was upset that her children were not going
to be the most popular children in school. They would not know the upset of breaking up
with a boyfriend...would not know the fashion senses that they are supposed to know...
I think about Meaghan, who just turned 12....the angst of boys, makeup, clothes and grades.
The fact that she is aware of all of this...
It takes me back to my childhood and all the 12 year old angst I felt...
It has not changed in 37 years...still the same snarkiness.
Yet, Meaghan has an advantage over these kids....she is amongst a family who accepts
and loves people for the way they are..
She is nurturing and loving...she cares for her fellow classmates, even when they are hateful
and rude.
I am so gratefully proud of her...
and all my kids...
Parenting these children has not been a hardship,
it has been a blessing...
and I continue to thank God every day for allowing me to
be a part of their lives...Autism and all...
So, JB....
It is not about how much cream we smear on our kids,
or how we alter their diets,
or how we take them to a doctor who will tell us in 6 months to a year
that our children will be "normal" that
makes us a great parent...
It is about walking the floor with them at night when they cannot sleep...
it is about making sure their homework is done...
it is about making sure they mind their manners and face adversities
when others do not want them to...
It is about taking them to their band and choir rehearsals , speech therapy, occupations therapy, baseball practices...
it is about making sure they know no matter what...they are why we were
put here on Earth
It is about waking up every morning and thanking God for putting
these amazing kids into our lives !!!
Yeah...I tell it like it is too.....!!!
About Me
- Mom26children
- I am the proud mother of 6 children. 5 of our children have autism. We do not feel our world has ended, but just begun. We do not chelate, intervene biochemically, give shots of any kind, practice ABA, etc. We treat them as we treat any humanbeing. We treat them with kindness and respect and expect the same from them. They are exceptional children.
Wednesday, February 03, 2010
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14 comments:
Thanks for that great post! I like to know what parents value as worthwhile "treatments" or modifications. Being only a grandparent of autistics who live 1300 miles away, I often wonder over the variety of approaches and hopes. I'm more the kind of person to deal with what is given, rather than wanting to "cure" those who are not NT. Realizing now that a number of family members are/were autistic at a time there was not a recognized syndrome makes me lean this way. Isn't this a great time to be alive? We have so much information and hope!
I think as parents who love our children we weigh up the risks of any treatments that are put our way, and if there is any hope of a positive outcome then we are likely to take them.
Yoga has been found to be an excellent alternative treatment for Autism and other neural related disorders in some children.
In addition to the positive effects it can have on children it can also help parents or carers of the children. Yoga is known to have great mental and physical health properties and creates an inner calm and focus.
My Nephew was diagnosed with Autism and I started to read up and read that Yoga could help, so I commissioned an independent report to see if it really did have benefits (which you might like to read at www.autisminformationservice.com) and the outcome is very positive.
As a parent the one thing I know is that we never give up hope, we never looking and never stop loving or caring regardless of what problems our children have.
Lisa
Lisa - Karate helps too. My eldest loves it and the growth in control of his thoughts and body is amazing. I know of many HFA/NLD/ADHD children that take Karate.
My youngest takes swimming lessons. Loves them.
JB's post was a response to an article in the NYT by a mother who gave up on biomed treatments after realizing they were a waste of time, and the DAN doctors were not to be trusted. However, to JB and his AoA followers, it is hard to understand that concept. They think that the writer and other parents who don't pursue every cure du jour are just lazy and give up too easily. I'd have commented in the AoA post but I never get my comments approved there, so why bother. The thing is, many parents would be doing biomed IF those treatments were prescribed by real doctors and based on solid and tested science. However, I won't allow a DAN doctor come near my son. They're just terrible.
As always, Jeanette, you are bang on. I love what you wrote.
My Andrew turns 6 today, and we are trying to instill many of the same values as you. Consistency, love, and acceptance are the key to parenting, in my ever so humble opinion. Parenting Andrew is not so different from parenting our so called NT kids. We expect nothing less from Andrew and it's working.
Excellent as always! Yeah, the whole idea that they're the better parents for continuing to go farther and farther down the woo-hole in pursuit of their mystery cure is an exercise in self-justification on their part. Far easier to reduce the cognitive dissonance if they cast parents who don't go along like lemmings as do-nothing parents.
I truly believe, in my heart, that many of these parents are too far involved financially and emotionally with the biomedical interventions.
How would they look if they chose not to pursue something they are so vehement about?
JB went on television several years ago and stated that it would take 2 years of chelation to make his son NT...why hasn't one person questioned him on that?
I find it insulting to hear that because we don't buy into the hype of biomedical...we are suddenly lazy parents.
It takes a heck of a lot more energy to actually work with your children than to rub some cream on a leg and watch!!!!
Just sayin!!!
Honestly, why are they so obsessed with the notion of having a child who cares about the latest fashion?
I never cared about that sort of thing. I still don't. Right now I'm preoccupied with becoming a parent in the future myself. I want to teach my kids about love and trust, not fret if they're not like dozens of other kids when I wasn't much of a pack sort of a person myself.
It's much more challenging to learn about the child as they are instead of seeking to turn them into something they are not. Not to mention realizing that it's not so bad if they are themselves...
Does that make sense?
Anyway, your attitude is cool
It's amazing how you have parented 5 children with autism!
I have a question for you, what about all of the increases in auto-immune diseases in children such as diabetes? Why the uptick if there is not something going on in the environment? I too have an auto-immune condition that can lead to Multiple Myeloma. It used to be rare in a population under 60, but now is becoming more common. I have a grandson with autism I watched him regress into autism. He just got sicker and sicker. Your argument is not true. When we changed his diet it stopped his endless diarrhea and his burping. I had never seen such a sick child. You must do for your child and other parents must do for theirs.
I don't mean to be snarky, but honestly, how is a nonverbal child thriving in a regular education classroom? I cannot understand this. If he has more than ordinary help, it does not seem as if he is participating in a regular education classroom but in his own little specialized world inside the physical space of a regular classroom. If he is nonverbal, how can he be part of the usual give-and-take among regular education students? He may be doing well within his limitations, but honestly this seems like the same hyperbole you criticize AofA for. My child is autistic and somewhat verbal and I can see how his lack of language interferes with many levels of socialization and learning. It does not mean I do not appreciate and love and value him. It does not mean he is not doing well on some levels. But it does mean that he is not "thriving in a regular education classroom." I would appreciate some explanation of your definition of "thriving."
Hi Julia,
My son, who is non-verbal, is a valued participant in his classroom. In order to be inclusioned, he is required to do the same work as the NT children.
They do not even realize that he is "different". He has to read with them and answer the questions. Which he does by pointing and using his voice system.
Kiernan is non-verbal, not unintelligent.
He has consistently brought home straight A's....grades he earned.
My son has an amazing team on instructors and therapists who work hard with him. He is not given a chance to not succeed. They expect a lot from this little boy, because he can do it.
He is "thriving" because he is accepted and loved by his peers and his teacher. He is "thriving" because he knows how to behave and because of that, he is able to complete his work and tasks without much help from his teachers.
I just wanted to say thanks, that's it. No opinion on treatments that I won't have them give my kids. Just thanks for knowing their is another mother in the world who feels like I do about their children and how they are treated medical. How it is ok for these kids to Autistic. I get so many people who tell me oh it must be so hard being the mother of an Autistic child, It's hard being a parent period. I love my kids no matter who they are or what they have. So thank you so much for letting me know I am not the only one that feels that way.
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