Autism and grieving

Autism and Grieving

By Stephanie Millaway, MSW, CSW

While attending grad school years ago (I won't mention how many years though), I took a class that focused on grief and loss and how to council individuals going through such a trial.  It mostly talked about someone who has passed away and how to help people cope during this difficult time. 

Sometime later, I found myself in a small support group while my child was in the initial stages of the Up-to-3 Early Intervention Program.  Here we talked about the grieve process again, but in regards to having a child with a Autism.  Fast-forward to now, and I have a 5 year old with Autistic Spectrum Disorder and Sensory Processing disorder. Maybe I am writing this more for myself as I have days that are difficult dealing with this reality.  I also figured that this is helpful information for parents.  
Just to put this out there, everyone experiences grief in their own way. This really is essential to get this. It really seems like a no brainer, but let me share an example.  I had a family member who has stated many times that my child is "fine" and that he "will grow out of it and be talking".   I can't force someone out of their denial.  Of course this would be great if that happened, wouldn't it?  The point I am trying to make is that everyone deals with loss differently.  The loss I am talking about is the loss of what we had hoped our child would be.  I still love my child like crazy, but honestly, I sure wasn't planning on this, but who is??  Instead, the college fund we started when he was a baby may be going towards a group home or day program when he is older.  No parent really thinks of this or hopes for this. 

Anyway, here are the 5 stages that Dr. Kubler-Ross has identified.  You can flip-flop through these stages in a blink of an eye.  Hopefully, this helps normalize some of these feelings we have as parents, siblings, grandparents or other people in this person's life.  You are permitted to feel this way, the lady you don't know who is writing this post is giving you permission :), but I guess I will get to the stages since I said I would a few sentences ago:

1. Denial- everyone knows what this is so I won't elaborate, but it's just that shock.  Thinking they will "grow out of it" that 
2. Anger-have you ever been angry about your child's diagnosis?  I sure have.  I see people who do all these horrible things during their pregnancies, and their kids are okay. I am upset that people I grew up with all have children that can talk, play, have friends etc.  I am pissed.  I see kids my child's age playing soccer, I want him to play too!! Yes, call the whambulance, because I am having a pity party.
3-Bargaining- "Please God, for the love of everything that is holy, please let him go back to sleep, it's 4:00 in the *_!$@ morning!-if you could just make him sleep I promise I will do a, b, c!"  We have all been there, pleading or bargaining (hey, that's what this stage is called) to make our child okay!
4- Depression- You know how I said it's okay to feel all of these things?  It really is. Is it okay to be stuck there for years?  Not so much.  Depression is so easy for parents of these kiddos to slip into.  Trust me,I am falling down that slippery slope.  One thing is to be self aware and reach out for help.  I know I have gotten to the point where I don't want to hang out with people, go anywhere (besides walks or to the park with my kid) and feel like I don't "deserve" a night out. Truly, if I didn't work part-time, I would go weeks without showering and still be in the same pjs.  When your only friend is your kid because you are too down in the dumps about your situation, that is a problem.  Ask for help, get support-I so need to follow my own advice!
5-Acceptance- We may never truly accept our child's condition.  I sure haven't accepted the ear piercing screaming or hand biting.  I hope one day I can be at this point, that I can walk by a bunch of kids playing and be okay with the fact my child isn't involved or that he is the only kindergartner in his school that has to be in Special Education.  

So there you have it. I guess one more thing to be aware of is that your spouse will most likely never be in the same place you are grief wise.  My husband right now is in the anger phase, he feels that my son doesn't even like him (which is NOT true, he just shows it differently) whereas I am in the "don't make me go anywhere and socialize with anyone unless it's Walmart since I can stay in my pj's there and not look too out of place" phase.  

my cheap side thrives as my social life dies

Well we got Dylan potty trained!  Yippie!  With using the ABA protocol, we started in April and he picked it up instantly.  So we didn't start until he was 5, bite me if you have a problem with that. Not only did we have to teach him to physically use the toilet, we had to teach him to request with a picture since he is non-verbal

 When we got him diagnosed, the Doctor wanted us to get an OT and start potty training him.  At age 2.  Um... good thing I am an educated woman not intimidated by professionals, because I am one.  I knew my kid wasn't ready and I knew when he was showing signs of readiness.  He is doing awesome with this endeavor and we had him out of night diapers just a couple weeks after potty training started.  He independently goes in the restroom and does it.  However, he strips from waist down and I will find him naked.  Cute now, not so much when he is a teenager :).  Now I just have to be more consistent with bringing his PECS book so he can request "toilet" in public.

As you can imagine, this has been HUGE in savings. We had to special order bigger diapers for him and it wasn't cheap.  I guess the downside is it has really limited us even more in what we can and can't do.
Vacations are really out of the questions right now, not that we went anywhere anyway.  My family has a cabin in Bear Lake and that is not an option this summer. We have to drive through a canyon with no rest stops; even if he had his PECS book to request bathroom, we can't immediately meet this demand.  Swimming is not an option either since he has no way to let us know he has to go to he bathroom. We just use our Walmart kiddie pool we got for $10 and that is our equivalent of a beach vacation for us.

Not that his has anything to do with toileting issues, but his auditory sensitivity has been off the hook.  Last year we were able to see fireworks.  This year, we watched the neighbors do some of the cheap ones and it was too much for him.  Attendance of family gatherings are few and far between.  The only things we really do that he can tolerate is walking around the grocery store (for some reason he is okay with that), taking him on stroller rides to the park or just playing in the backyard.  My cheap side is happy at the next to nothing money we are spending this summer.  The only gas we spend is for us to get to work (me and my hubby are only about 3 miles from our jobs) and running essential errands.

So my idea of fun is organizing the recycling or getting caught up on laundry. Dylan is happy as a clam doing puzzles or playing with the corner of rugs.  I know we be getting CRAZY here.  At least my savings account is happy and somewhat plentiful.  Maybe one day I will do something daring like go to the movies or have someone besides me cut my hair.  I am not sure if I could handle that level of excitement right now :)