Let's jump right on in, shall we?
My 38 year old brother is autistic, hyper-active and aphasic. I have lived my entire life with autism in the mix...watching my parents struggle to understand the undefined, listening to doctors and specialists cast blame while recommending the unthinkable (institutionalization) and enduring the stares and giggles of others who didn't understand my brother's public displays of difference. I have also witnessed the fantabulous and never boring force of nature that is my brother, the empowerment that can be found through advocacy and action and the strength of community.
Five years ago I moved back home to Missouri to do what I always knew my sister and I would eventually do - take on a guardianship role with my brother. Our father passed away several years ago and our mother is not emotionally able to tackle the stress and drama that is all too often a part of guardianship, so my sister and this bitch are sibling co-guardians. Our brother lives in residential treatment near the neighborhood we grew up in with two roommates that he's known for years, so we're very lucky.
My sister and I are now fluent in the languages spoken by the Department of Mental Health, Medicaid and social services. We balance our role as sisters with our role as GuardianAdvocateWarriors...and I try not to resent the fact that more hours are spent going to war than just being a sister.
My brother's entire life is wrapped up in his Person Centered Plan...a couple of hundred pages of recommendations and therapies that result in funding from various state agencies and monitoring from all manner of sources. My sister and this bitch are in there too...the frequency of our visits, our likes and dislikes and the activities we enjoy together are listed in bullet points on white pages in Arial font right above our brother's nutritional chart.
And it is that plan...my brother's Person Centered Plan...that I can't help thinking about when I think of autism awareness.
I wish his plan could reflect his strength...the years it took him to learn to say the few words he does or the unbelievable ease with which he communicates without words.
I wish I could make the world aware of the healing power of his smile, the cure for bitterness that is his laughter or the soothing warmth of his hugging embrace.
I am so unbelievably frustrated that I lack the creatively to make my brother come alive for people...to bring awareness of the person he is so that politicians and the powerful would want to fight to protect him and support him just as much as I do.
But all I can do is try...and then try and try again.
'Cause my brother is autistic and every month is autism awareness month.
He's not a cure that has not yet been found. He is more than a diagnosis and far more glorious than any definition assigned by humans.
He's magic...outstanding...and sometimes loud as hell and annoying (wink).
This April I am aware of the caregivers, advocates, champions, teachers, social workers, activists, friends and family members that make my brother's life possible.
And of the individuals with autism who make life extraordinary and all that we need to do to support them...
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All I can say is THANK YOU. I have been working with people with Autism for years and it is hard to explain to people how much you can learn from them, how absolutely incredible they are, and the joy you can get by being around them. The struggles and hardships are always worth it because of their undeniable spirit and strength.
Keep fighting. It is people like you who make the fight worth while for the people in need that we grow to love so much.
Maybe one day we will live in a world where people with autism are accepted in society and given the opportunities they deserve.
Until then, we must continue the fight.
Personally, those in the trenches, and not the OTs/PTs/Behavioral Therapists that see the children/adults for 50 minutes at a time at $90-$150 an hour, but the actual day to day care providers such as the nannies, the RCAs and CNAs at the homes, the teacher's aides, if you want to support them, pay them better.
Or, if you personally can't pay the trench workers better, write letters, lobby, encourage these workers who are usually women, and usually grossly underpaid, to unionize.
As a former therapy aide/careprovider in this field, who did all the work that the therapists left for me, I didn't want to to hear, "OH, I so value your work, it's you who helps my child the most" what I wanted was a decent fucking paycheck so I didn't have to take on additional work, like evening and weekend babysitting to make rent in my cheapass studio apartment.
So you want to support those workers, pay them better.
Being an in-home line therapist is not an easy job. ABA therapy sessions last about 3 exhausting hours, and the therapists make about 10/hr. Then they drive to another house for another three hour session. If your clients don't live in the same area, you lose time and money driving. Most therapists (I'm not talking about coordinators) can't live on their wages.
Hear fucking hear. I am a shelter worker, and we get treated as the lowest of the low but we do a lot of work with these kids, often preparing them for court or doing more individual counseling (not therapy, since we don't have licenses, but whatever) than they receive anywhere else. We work crap hours, LONG hours (my longest shift to date being 17 hours, my shortest being 10 hours), some days I haven't had a chance to go to the bathroom because I am so busy, and I get paid less than some full time retail workers.
Luckily right now I am able to live within my means, because I am supporting only myself and I have escaped credit card debt while obtaining my degree, but I am one of the rare few. I've been trying to start a union but I have no idea how to start.
You should scope out what Kyrina McCormick has been writing about in a new(ish) column at Huffington Post. She deals with a lot of the same issues.
Tough business. Best to you, and your family.
Thank you for this post. My cousin also has autism, and he is the most amazing person I know. I also wish that everyone could know just how wonderful he is. Speaking isn't all there is to communication.
Thank you for posting this.
I'd like to pose a question. How do the people on this thread feel about the whole puzzle thing they use for autism awareness?
Thank you. Your post was extremely powerful and expressed what so many families and people with developmental disabilities or varying abilities go through on a day-to-day basis.
As someone who has worked in this field for the past three years, often advocating for people with multiple physical and cognitive disabilities with complex medical needs, I am concerned that your loved one's Person Centered Plan (PCP) does not include information on his strengths and abilities, instead of just the therapies and issues that you mentioned.
Person Centered Planning was developed for the very purpose of getting away from trying to fit people into habilitation plans or programs or neat little "boxes," and instead creating care that is responsive to their personal abilities, hopes, and dreams for their lives. His strenghts, abilities, likes, and dislikes should ABSOLUTELY be reflected in his PCP.
I know it is a constant struggle, and that ability and functional levels play a large role for the individual, and that you have enormous responsibility as co-guardians. But if you can, I honestly would go back with your sister to the social workers, providers, case managers, etc. who are putting together your brother's PCP, and tell them that it must be more inclusive of "him," as a whole person, with him making decisions whenever possible, and with information that clearly expresses who he is and what he wants, based upon his ability level and your input as family members and guardians. You have power, even thought this process can be so dis-empowering.
With regard to the comment someone left earlier about workforce development and paying direct care staff what they are worth, I cannot stress enough how CRITICAL this is to improving the lives of these workers, thereby improving the quality of care people with disabilities receive. Anyone with a loved one with a disability who receives community-based care should be advocating for this.
For more information on negotiating PCPs, and another great tool that may help called an Essential Lifestyle Plan (ELP), which stresses focus on the individual and not programs or boxes they "fit" into, check out these resources below.
Also there are many blogs out there now, including mine New Wave Grrrl (http://newwavegrrrl.blogspot.com), that create support and address issues for women (e.g. feminism and disability issues) men, and kids with ability diversity. I have listed some of those below as well. Good luck, and you have the support of our community and voices behind you.
Websites:
Person-Centered Practices
http://rtc.umn.edu/person/
ELP Planning and Facilitation
http://rwjms2.umdnj.edu/boggscenter/training/essential_lifestyle.htm
Families Planning Together
http://learningcommunity.us/documents/FPTGuide.11-03.pdf
Blogs:
Liz Henry's Blog Composite
http://liz-henry.blogspot.com/
New Wave Grrrl
http://newwavegrrrl.blogspot.com
Special Needs Truth
http://specialneeds08.blogspot.com/
Autism Vox
http://www.blisstree.com/autismvox/
Thank you so much for writing this.
I'm in two minds about this as my own adult daughter is guardian for her [our] three younger children where both the boys are autistic.
38 years is a long time to advocate and I'm sure that your whole family appreciates what you [both] do. And yes you're right, it's autism aware day and month every minute.
Best wishes
Thank you, every month of my life has been an autism awarness month too.
Disability equality and feminism go hand in hand. Both are about seeing people as individuals not members of groups, where needs, interests and identities are lumped together as one.
Both of my brothers have high functioning autism (asbergers syndrome) and it is a deeply misunderstood condition (even by those who mean well!)Their disabilities have always been balanced by unbeleivable abilities.
I always assumed that I would take on a gaurdian role at some point in the future, as my family were told by proffesionals that neither would be able to live independantly EVER. They are in their 20s and both live independantly. One with lots of phone calls home, a great deal of anxiety and limited social interaction, but it is still an achievement beyond anything we could have imagined. He is in complete denial about his asbergers syndrome, and I think if the condition was less stigmatised he'd be able to 'come out' and get the support he needs. My other brother lives in a very supportive, routine-based environment, where he is accepted for all his peculiarness. For him the obsessive side of his Asbergers enabled him to train REALLY hard for years to become an acrobat living and working in a travelling circus; having found an environment where he is enabled rather than disabled by being who he is.
My point is; my family were on occassions several asked to put my brothers into residential care, give them ritalin, put them into special needs education. I have no critisism of people who are doing what they feel is right for their own families, but the fact that my brothers were just about high functioning enough for them to be the weird kids at a main-stream school shaped them into people who could have careers, go to university and (with help, reassurance and hard work from my mum and dad) live independant lives.
When I see people publish books about their kids with AS and autism it worries me, because those children could grow up into adults with awarness of what it means to be different, and having a label hanging over them can be really distressing. No one wants a 'disorder'.
Don't waste your time looking for a cure, you have to accept people the way they are; but don't underestimate either. Autistic people are just as full of potential and surprises as everyone else.
My son is a very high functioning autistic child. He knows he's autistic but with the help of my school district and my family he is 90% mainstreamed into kindergarten. He still has to go to special-ed everyday and speech language 2x a week but to everyone he knows he's just a little weird. But he's my son so that would make him about average. He believes he's just like everyone else and that's all that matters to me. All I want for his life is for him to be happy and successful in whatever he chooses to do.
It really burns me when people tell me that I have to put my son on meds. I hate having to explain to them why I won't. My family has a long history of substance addiction and most meds used to treat people with autism are narcotics. I went through the same thing with the psychologists myself at the age of 13 when I was diagnosed with ADHD. If we work with people to understand their disability and teach them ways to control them meds aren't always necessary.
At 3 my son couldn't speak, at 4 my son was just learning to communicate and now at 6 he won't shut up. That was done without meds in a special education pre-school. I owe that teacher a lot for teaching my boy to talk. I found every way I could to help raise money to donate to that class room.
There are so many ways that we can help those who help and care for our family and friends. Even if it is just something small like buying a hammock swing or something larger like buying a computer.
I agree that we don't need to find a cure, we need to accept these people for who they are smart, funny, interesting and sometimes very loud. Everyday of my life is made brighter because of my son. He doesn't know how to express his own emotions but by golly he sure can read mine. When I'm sad he's sympathetic and cuddly, when I'm annoyed he's frustrated, and when I'm happy he's a laugh riot.
Thank you so much for posting this. It warms my heart to hear stories from other people who care for and love someone with autism.
Great job, Sharkfu!
The struggle for acceptance and equality is a long and difficult one, but it's worth fighting for.
Huzzah huzzah! I just tackled my own troubles as a woman with Asperger Syndrome in the community section, it's great to hear another voice speaking out for autism. Way to go Shark fu!
Bravo to you and your sister for stepping up to the challenge. You, your sister, and your brother are a beautiful example of "family." God Bless.