Monday, April 29, 2013

10 Things I Wish Other Parents Knew About Autism

The last few days of Autism Awareness / Acceptance Month are dwindling down and my mind has been churning this post ever since I read 10 Things I Wish Your Kids Knew About Autism on Babble at the beginning of April.  More often that not, it isn't the children that have trouble accepting my Autism, it's their parents.  Specifically, they have trouble accepting us and the way that we raise our child.  What I wish there was more of is an understanding of how Autism has changed our life; how it has made us different.  There is a lot of judgement about what I'm doing/not doing/could be doing to make things easier/better/make Autism disappear.  I know that there is a lot of controversy, even within the families affected, about these topics.  So based solely on our experience, here is my list:

1.  I was a great parent before I had kids.
I used to see moms out with their kids and I swore that I would never do what they were doing or MY kid wouldn't be like that.  Being a new parent really opens your eyes to how cocky and judgmental you were of others.  But I feel like parents of neurotypical (NT) kids still hold on to that attitude when they see another parent struggling.  Maybe it helps them feel better about themselves.  But I promise you, I was right where you were before I ended up in another world. 

2.  Having a kid with Autism IS like living in another world. 
We heard a great analogy from one of M's first teachers that helped us navigate her diagnosis.  As expecting parents, you plan extensively for the way you will raise your child and what you will do with them, traditions you will carry on, etc.  Planning a trip to another country takes a lot of forethought and care because you need to be know what to do when you get there, where to go, and how to speak the language.  Imagine you have spent 9 months planning your trip.  The day you get on the plane you are so excited you can hardly stand it.  Eiffel Tower, crepes, The Louvre - you are pumped.  Except that when you get off the plane, you realize you are in Holland.  Holland is amazing and beautiful but you have no idea where you are, you don't know the language, and there isn't a map in sight.  You feel alone.  We thought we knew what to expect because we were planning on having a NT child.  All of my years of babysitting and being a camp counselor did not prepare me for raising a child with Asperger's.

3. Don't try to one-up me when it comes to meltdowns.
I used to try and explain what I was dealing with to other parents with NT kids. But I got frustrated hearing how their kids threw fits too, so they got it.  Try multiplying your kid's tantrum by 100.  Yes, all kids have meltdowns, but kids with an Autism Spectrum Disorder have meltdowns that are much more intense.  Everything is magnified.  Sensory stimulation is overwhelming.  And sometimes I don't even know what's causing it.  And they aren't doing it to get a reaction, or because they aren't disciplined by their parents.  My daughter describes it as a physical pain that she can't get away from.  Because of her bluntness, she is always honest about why she does something on purpose, like disobeying.  But there is never an explanation for a meltdown.  It just exists.

4.  I DO discipline my kid.
I know from your view it looks like I give her everything that she wants based on the way that she is screaming and acting 2 or 3 years younger than her age.  I can't always control what sets her off.  I do my best to limit overstimulation or keep her routine the same, but it is NOT from lack of limits or consequences.  She has consequences all the time.  Her impulse control is limited, however, so she doesn't always remember what they are when the noise in the room is so loud that her skin is crawling.  And I can't punish her for screaming when that is what makes her body feel better and that is her way of self-soothing in the moment.

5.  Every child with Autism is different.
That means what helps each of them will also be different.  A change in diet will not help every child.  This comment will probably bother a lot of parents with kids on the spectrum.  I have a lot of friends whose ASD kids are gluten-free, dairy-free, casein-free, sugar-free, etc.  It works for them.  It might work for us.  Right now I am too overwhelmed to go there.  I am doing what I can, when I can.  I read a study once in the Journal of the American Medical Association about a dad who secretly reintroduced gluten into his child's diet for 2 straight weeks and there was no change.  But I also have a friend whose daughter began to talk more after removing all the things above from her diet and there are many more stories like hers.  I'm not a physician.  I'm a mom who is just trying to survive with little support from outside sources.  Maybe we'll go there someday too.  Right now I'm just going with what is working so far and when I feel like I can come up for air, I'll reach out to someone who can show me the way.  And just like normal parenting, if there was one book or one way that worked for all kids, that author would be filthy rich.  But there isn't.  Damn, I wish there were.  For all of us.

6.  We are exhausted most of the time. 
I used to be fun.  I used to have energy.  My husband and I just got back today from almost 48-hours away from our kids.  It was only the second time in 8 years. The last time was 5 years ago for my birthday and we fought the whole time because we were under so much stress, so not really a restful break.  It's hard to find people who you can trust that will be able to handle the meltdowns and the constant need for interaction like our daughter has.  And we have to find someone that she is comfortable with too because change and the unfamiliar are very hard for her to deal with.  We had a great time this weekend.  We had time to rest.  But we've only been back a few hours and I'm already super-stressed out again.  I know you are thinking that you understand, but no.  You really can't.

7.  We need to escape once in awhile.
For me, work is my daily escape.  I know that some people think we need to spend 100% of our day devoted to finding a cure or planning new strategies for how to control behaviors.  Let me tell you, I did that for 3 straight years and I nearly lost my mind.  Going back to work was my saving grace.  Work is still hard some days, but it's a chance to get away from what we deal with day in and day out at home.  I am happier, so my home is  happier.  Yes, I miss school activities and picking them up right after school.  But for us, this set-up works much better than the alternative.  We've been there.  Done that.  It wasn't right for our family.  If you're ever wondered how you can help a family affected by Autism, offer to have their kid over for an hour to play.  Even half an hour.  Time to breathe is priceless. 

8.  Life with Autism is lonely.
The only thing better to having our kids over to play is having us over to hang out.  We feel like we don't belong most of the time.  There aren't a lot of parents that we can relate to. But that doesn't mean that we don't want you to try.  I had to make choices very early on about who I would hang out with that didn't make me feel bad and didn't treat me like I was doing everything wrong.  I miss those friends.  I see them on Facebook and we send Christmas cards back and forth.  But our kids don't play together like I thought they would.  Like we said they would when we were dreaming up our families in our heads.  There is loss and grief involved in living with Autism that lasts longer than right after the initial diagnosis.    

9.  High-functioning doesn't mean that it's easier.
High-functioning just means that my daughter is able to perform well academically and might have a better chance of  holding a job and living on her own someday.  She is well groomed because I help her with that.  She is verbal.  Her stims aren't as obvious.  But a change in schedule will throw off her whole day and her meltdowns and reactions can be just as severe as someone who is considered low-functioning.  It's just more surprising when you see her rocking on the ground crying because 5-minutes earlier she was in her reading group that's a few grade levels above where she should be.  The contrast is painful, I know.  Her social age is greatly behind her academic age.  Two weeks ago after one of the worst meltdowns she's had at school yet, I ran into another mom and actually admitted to her that I sometimes wished that my daughter had more classic autism symptoms, like her non-verbal son, so that people would stare less or maybe just understand more while they are staring.  A pretty low point for me but thankfully this mom got where I was coming from.  She knows the truth.  See #9.

10.  We wouldn't change our daughter if we could.
Yes, there are things that we would give up in a heartbeat.  The meltdowns, not being able to get through to her when she's experiencing an episode of sensory overload, or the disconnect of emotion when emotion is definitely needed.  But some of the most amazing things about her are because of her Autism.  We are in awe of the way she sees the world and how her mind processes things.  She is loving and affectionate.  Her artistic ability is impressive. She loves intensely.  She is brutally honest about the way she feels so when she says she loves us it's one of the greatest feelings in the world to her father and I.  We have faith that she will do something great with her life.  Her heart is so big, I don't see how she can't.  In what role or capacity, we have no idea.  But we will be proud of her, no matter what.