Fighting for what your child needs

anat-baniel-method-therapy-special-needs-childrenI have had cause recently to think and speak about how society sees differences – including and specifically the differences between a person with a disability and a “typical” person.  I even heard the term neurodiverse for the first time.

Human beings notice differences.  We are designed to do that.  The better we are at noticing differences the better we can learn.  My work is actually all about increasing someone’s ability to notice and feel differences.  

All animals seek out those who are similar.  They notice differences and gravitate towards others they have things in common with.  My son’s service dog is overjoyed to see another retriever enter the dog park.  Black, yellow, curly coat, flat coat, she makes a bee-line to say a joyful HELLO as though they were FAMILY.   How does she know the difference? She grew up with packs of matching dogs in her puppy experience and at Canine Companions training center it was like seeing loads of almost identical dogs.  Somehow she sees the silhouette or senses in some other way that the retriever dog is similar to her.  

Being attracted toward others with similarities is on the opposite spectrum to repudiating those with differences.  Discrimination happens, but it is some measure of our humanity when differences are respected or valued.  We can see this acceptance in the animal kingdom and we can see it in our society.  Unfortunately, it is not supported by all groups.  Bigotry, segregation, bullying, prejudice all are names for what happens when differences are not accepted.

Well, in the world of neurodiversity – or disability – people with special needs who are differently abled encounter the feeling of stigma often.  Just having the special need means they do not have an equal opportunity to accomplish what others do.  They have to work harder for most achievements.  Compassionate people recognize this.  

I saw a quote today from Paul Krugman and this excerpt caught my eye:  “…the kind of society we’ve had for the past three generations—that is, a society that, acting through the government, tries to mitigate some of the ‘common hazards of life’ through such programs as Social Security, unemployment insurance, Medicare and Medicaid.

I believe in a relatively equal society, supported by institutions that limit extremes of wealth and poverty. I believe in democracy, civil liberties, and the rule of law. That makes me a liberal, and I’m proud of it.”

Paul K. is referring to many kinds of differences.  The programs and laws he is referring to all apply those people in our society who have disabilities too.  So, my point is this:

We, as a society have decided that people with disabilities are ENTITLED to an equal opportunity.  

In recognition that not every single person would automatically recognize this core belief laws were enacted to give people with special needs (and their families) the power of law to request that they be given what they are ENTITLED to – equal opportunity to have their life.

In my travels and working with clients from other countries I am aware that not all countries have societal OR legal supports for people with differences.  I am very thankful that we DO have them here in the USA. Two major pieces of legislation that positively support our society’s desire to support people with disabilities to have equal opportunities are:

The Americans with Disabilities Act of 1990[1][2] (ADA) is a law that was enacted by the U.S. Congress in 1990. It was signed into law on July 26, 1990, by President George H. W. Bush, and later amended with changes effective January 1, 2009.[3]

Public law 94-142 is the Individuals with disabilities education Act. This piece of legislations is a United States federal law that is responsible for governing how states and various public agencies provide early intervention, special education and other related services to children with disabilities.

Having a life accommodating special needs is always extra challenging and often extra expensive.  If a person in a wheelchair needs a PCA (Personal Care Attendant) it can cost over $20,000 per year.  Schools have to pay for specialized educational equipment for children with special needs.  Vehicles have to have expensive modifications to accommodate wheelchairs and other equipment.  That doesn’t even include the additional medical costs and therapy expenses.

Our society decided that this was not about the dollars.  People with special needs did not choose to have a more expensive life.  We have chosen to be a humane compassionate society who honors differences.  When individuals start to focus on dollars to make decisions about who will be included, whether there will be support services, etc., we have to keep coming back to that core belief and use the supports our society has given us to ensure that all have a better chance for equal opportunities.

I am sorry that getting what is needed to make life equal for people with special needs is not always easy.  I think it helps to remind those who are fighting to get what they need – this is not a luxury you are asking for – this is not a handout or a concession – it’s not a favor someone decides to do for you.  This is how our society chooses to treat each other.  


Two gifts from my mother

Doing dishes
Don and Jamie -Doing Dishes

I just read someone’s epiphany – their turning point when they changed their perspective in life.  I’ve had a number of those and quite a few of them have centered around coping with the challenges of raising a child with special needs.

 It’s very clear in my mind.  I was standing washing dishes and talking to my mom.  I felt distraught and discouraged.  Laundry was piled on the couch. I was working through a mountain of pots and pans.  I KNEW the floors needed swept, the beds needed made, the carpet needed vacuumed.  And that didn’t count the car washing, garden weeding, and grocery store run.

 I said to my mom “What am I doing wrong?”  “Why does this all feel so hard?”  “Other people get these things done!”

 My mom replied “Other people don’t have a child with special needs.”

 My mom tends to get to the heart of things quite simply.  Somehow, hearing that from her helped me to forgive myself. 

 You see, I was the one who wasn’t going to let having kids slow me down.  I was still going to go camping, backpacking even, and run all around town doing my business.  What’s a kid or two thrown into the mix???  Just load them up and continue on. 

 That lasted until we were in the Sierra’s, miles from a hospital or even any other person, with my son coughing like a seal.  Yep – it was croup.  His dad was boiling water all night and passing it under the blanket to me where I was holding my son and trying to help him breath the steam. 

 I heard him quietly say – “Andrea – I can have us packed up and out of here in 30 minutes – Should we go home?”  Don, who couldn’t yet talk, mind you – started chanting like ET “hooome”   “hoooome!”  I sighed and said, “let’s just give it a little longer.  We can make it until daylight.”

 That was our last trip into the wilderness.  It was just too risky to be that far from hospitals and other help.  Reality was quickly setting in.

 Back to my mom and fastforward a couple more months.  Me: “Mom – I feel like I can’t be a happy mom for my kids.  How can I ever be happy when one of my children isn’t ok?”

 Note that I was still in “Fix-it” mode.  I wanted to make everything better for my boy.  That is what parents do, right?  There was no way to kiss this and make it better.  I felt like I was failing my son and he was at risk because I couldn’t make cerebral palsy go away.

 My mom, clearly and simply said, “but Andrea.  He could have died.”  Ok.  Wake up call.  Yes. I had plenty to be happy about.

 I never had any problem what so ever with loads and loads of love for my children.  I had quite a few more steps to take to get to totally accepting my son just the way he is, no need to fix, and appreciating his uniqueness.  These were a few of the first steps.  What a fantastic life lesson this became for me.  It’s something I wish for all parents, and especially parents of children with special needs.