No Guilt. No Shame.

Recently I have had the complicated pleasure of helping some friends sort their way through finding out that their children are autistic.  It is a pleasure because I truly love them and am blessed to walk with them on their journeys, and I am blessed to be able to share mine with them.  It’s complicated because, well, it is autism.  One of the things that has come up a few times is the idea that our kids are alright, and that following that line of thinking, should we skip some of the supports available or deny some of the funding that is accessible?

Where I live, there are a lot of options.  There are a lot of support choices.  Not as many as I personally would like, mind you, but still a lot.  There are behaviour intervention choices.  There is speech language support, occupational therapy support, counselling, art therapy, and play therapy.  There is funding for supplies and reinforcers, parent education, for travel to get the education, and for respite.

img_5298
Geometric block design created and photographed by Jake.

While I am working locally and within my school to help reduce the stigma surrounding getting your child an assessment, and having an autistic child, I am constantly reassuring parents that yes, indeed, there is nothing wrong with your child.  There is nothing wrong with your autistic child, or your child with special needs.  There is nothing wrong with being different, there is nothing wrong with having a disability.

I have been preaching this message of acceptance to everyone whenever I get the chance.  But I have been surprised at one of the results.  The question of whether to get or use money that we don’t need has come up.  And guilt has come up.  Should I use money to buy things such as colour ink so that we can print off pictures of all of our favourite Mario characters?  Or is that a waste?  Should I feel guilty applying for a credit on my taxes for raising a dependent with a disability?  I thought autistic people were okay?

Okay.  So.  No.  No guilt.  No shame.  No worry.

Yes.  Our kids are alright.

Yes.  They are different.   But yes, they have a real disability.  That disability is largely a result of the way our society is structured and the way the rest of us understand and communicate.  But it is real.  Autism is both a real difference and a real disability that requires accommodation.  Different people require different accommodations, and not everyone will go through ink at the same rate—for us, it is both a special interest and a reinforcer.  But accommodations are required.  I have to make the same food every school day.  I have to provide food that my very food-sensitive kiddos will eat.  There is no funding here for special foods or supplements.  But there is opportunity to get some money back on my taxes.  I will take it.  There is no funding here for me to spend time one-to-one with Jake, to spend time working with him on relationships.  But there is funding for me to get a behaviour interventionist into our home to help him work through his struggles with Penny and Aiden.  I will take it.

It’s not that I haven’t struggled with guilt, but I have worked through those feelings.  This is what I said to a dear friend today who asked me about the guilt applying to get money for supports she isn’t sure that she actually needs.

If I believe that autism is a disability as well as a difference, then I believe that accommodations are required.  And I do.  And if I believe I am making accommodations then it is not wrong to be reimbursed for them.  And if I am working as hard as I believe I am to support and accommodate, it is not wrong for me to get every single penny available to support my sanity, my heart, my well-being, because that directly supports my family and those who need that support.

No guilt.  None at all.

img_5290-1
Another geometric block design created and photographed by Jake.

There are ridiculous statistics out there.  There are horrible videos of moms crying and whining.  There are parents who let the stress of dealing with autism destroy their marriages and families.  That is not happening here.

I am not ever going to go online and describe how terrible things really are.

I am not ever gong to go online and talk about how I cannot handle my autistic child.

I am not ever going to leave my husband because things are too insane.

Because I have support available.  Because my pride will not get in the way of me accessing that support.  Because I believe that things are not always terrible, even though sometimes they can be.  Because part of looking out for my children means being smart.  Because part of looking out for my children means that I have to look after myself.  Because I believe that education and understanding can change everything.  Because there are incredible advocates who have paved the way for us to join an incredible community where support and accommodation are normal, needed, and accepted.

Advertisements