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 :)

Autism ate my soul....

I have realized that Autism has consumed my life.  My life is 100% wrapped around my child who has this.  Seriously, it devoured my soul.  I am not upset about it, just completely obsessed with it, which isn't good. I wonder if any other parents can relate?  

I don't hang out with anybody ever, well with the exception of my 4 year old.  My idea of a crazy Friday night is running around at the park with him and then running around Walmart.  The thing of it is I don't want a social life. It causes me great anxiety to think about having to do something with people.  I feel like if I am not at work I should be with him.  Don't get me wrong, I am selfish and will have my husband watch him while I workout occasionally.  Cleaning or doing this blog is a "splurge" for me. That's about it.  So if you ask me to do something, and I decline, it's not you.  I just feel weird doing things with people now.  I don't think I know how to act in social settings. Let me just hang out in my sweats and take Dylan around in the wagon.  I think I am becoming slightly autistic myself.   

I don't date...my husband obviously.  I am not looking for people to date :).  But the idea of leaving my child with a sitter to go out with my husband?  The idea of this makes me want to hyperventilate.  Is she willing to change his diaper?  How will she know if he's hungry? So many questions... I would be a train wreck of a date. 

Certain activities require some planning. Some things might be a no brainer activity.  Example: family party- Where is it at?  Place for him to go outside? Will it be too noisy?  What about crayons-he eats those like candy. Do we need to drive separately so one of us can take him home?  I am extremely hyper-vigilant at activities or outings.  I will take my plate of food and follow Dylan around while I eat.  I am on him like a hawk.

I also feel like I don't do enough.  I should be doing at least some PECS and a structured play routine with him since he only had ABA this morning and no school.  The speech therapist wants us to document the PEC trials, but I have been slacking.  Ugh!! We work on things like imitation, following directions, pretend play, having him touch our lips when we say sounds (I call it the "Helen Keller)etc.  I think I will go do a 10 minute play routine with him right now instead of me talking about it.

Like I said, it's consumed me.  I am not complaining or upset, just this is who I am. I guess it's just a disclaimer for my nuttiness. I will be that crazy mom that will be going to school and sitting with her child in class.  Hey it will give me something to do and I can scare off children who try and pick on him.    

Handy Manny is testing my sanity...

So my child likes Handy Manny. By likes I mean it's the only show he will sit for more than a couple minutes and watch. If anybody knows anything about autism, a common trait is they OBSESS with particular things, and Manny is it in our house. Sometimes he will watch "Mickey Mouse" or "Little Einsteins" but it's not the same. This kid had no interest in "Cars" or "Toy Story" but could watch the same episode of Manny for 12 hours straight if we let him. Thanks goodness for him, I am not a lazy mom and take him away from the tv to do other activities. But we do have to watch some Manny each day. Manny is truly testing my sanity and I have a couple questions regarding Sheetrock Hills...

-Does anybody ever pay for anything? What society do the live in that you just perform services for free? How does it operate?

-Do they not have a freakin' Walmart? Gosh, I don't know how much Mr. Alvarez makes running a lawn mowing shop or Mr. Kumar selling teacups. Really? Once a Walmart comes to town everyone there is SOL, just to let you know.

-How is it that Kelly happens to have a 100 year old valve or a part to an elevator that's broken? Sounds like her and Manny are running some kind of chop shop. Things conveniently break and Kelly conveniently has the part.

-Does Manny REALLY need to feed the tools? They clearly have no digestive system and no way to eliminate. They are made of metal. How can they be hungry?

-Where do they live? Is it in the back of the shop? Do they all share a bed? There is an episode where they spend the night at Abuelito's and share a bed. Because sharing a bed with a saw is a great idea, one wrong move and it's over

-Where are all the baby daddy's? There are all these single women with no mention of the dad. I guess they don't need to worry about collecting child support or alimony since money DOESN'T exist in Sheetrock Hills.

-Is Mr. Lopart mentally ill? I am pretty sure he is a) mentally retarded or most likely b) Schizoid Personality Disorder. This disorder deals with:
--lack in social relationships (his only real friend is a cat which he has a VERY unhealthy and inappropriate relationship with. This cat goes everywhere with him; probably has to sit with Mr. Lopart while he is going to the bathroom)
--seen as cold, aloof and indifferent (he is never able to accept or appreciate anything anybody does for him and trust me it's a lot that has to be done for him. He is down right rude to Manny)
--have an internalized fantasy world (Mr. Lopart thinks he can do everything and has a tie to any event Manny talks to him about: being a Cowboy, a director, being an amazing golfer and bowler, having famous relatives who are bicyclists and artists, and the list goes on and on.) The reality is he is a moron and nobody ever calls him on his bull crap
--fear of sexual relationships (Yeah... Mr. Lopart is nowhere near having an intimate relationship with another human being, now the cat is a different story).

-Are Manny and Kelly ever going to hook up? If they go on a date do the tools go with? Kelly has got to be getting pretty old... her eggs are going to dry up.

-Each job is done in about 30 seconds. They sing a little diddy and they are able to fix a washing machine or a stove in that time. That's impressive.

-How come everyone is okay when the tools start talking to them? Oh... there's nothing out of the ordinary when a bunch of tools start conversing with you. And how is it Felipe has a Spanish accent? I know why Flicker does since he lived with Manny's uncle who only speaks Spanish, but why does Felipe and none of the other original tools have Spanish accents? I don't get it.

This is why I need a hobby STAT!

my tomboy roots...

So growing up I was a "tomboy". I wore sports attire (I think that was because we had mass quantities of it growing up because of my dads awesome job), I played sports and was anything but girly. I challenge you to find another 10 year old girl that could name the starting line up for every NBA team. Or who had a subscription to Sports Illustrated for Kids and devoured it every month. I am pretty sure I was Muggsy Bogues' number one fan (look him up if you don't know who that is). I find these traits keep surfacing and I have to accept that it's not a bad thing! Here are some examples on how my true self is manifested in my life today.

-I will make a confession (not that this is a surprise for anybody who knows me) but I HATE CLOTHES SHOPPING!! I hate it! Judge me all you want but I don't like it. I think its boring and expensive (my cheapness will have to be another blog in and of itself). I hated it when I was younger. Maybe it's because when I was 18 length wise I was the size of a 12 year old, but body wise I was a size 3/5. I hated trying stuff on that fit length wise but couldn't fit over my booty or stuff that fit was always WAY too long. What I thought was "fat" was just that I was short and athletic; I was 18 and not 12. In a perfect world I would just wear my long gym shorts and a t-shirt. I like my hand-me-downs; it takes the stress away from having to try on a bunch of stuff that I really am not that excited about. Maybe that's why wedding dress shopping took no more than 15 minutes. Sorry, just really not into it.

-I love anything active. Love it. Running, kickboxing, any sport, I am game. I have always been that way. Played a variety of sports growing up and started going to the gym when I was old enough. I was in constant motion. I go crazy if I can't do something like that one day. I love it when it's nice weather. I get so giddy and am glad I have a little boy who won't complain when we walk to the park and run around.

-Hate "girly" stuff. I don't wear jewelry. Never liked it. Don't have my ears pierced. Don't know why I got a wedding ring because I knew I would never wear it. My husband has learned to not get me flowers for any occasion because I think it's a stupid gift. They smell up the house and I just throw them out anyway. I tried to do something "girly" by getting my nails done. They just got in the way of kickboxing. My makeup selection is really pathetic and I don't care. If I didn't have to work and try to look professional I probably wouldn't wear it. I am fine with my hair in a ponytail. Wouldn't do that either except I would like to keep my job!

-My lack of etiquette. A good example of this is when I was a Jr. in high school. I got up on the table at JD's restaurant and farted in my friend Steve's face. Yes in public. Or when I was on a date with my boyfriend in high school and the movie at the theatre was having problems so we had a few minutes to kill while waiting for it. Some guy stood up and said "those of you who helped with the Olympics, stand up and tell us what you did." I got up (mind you in front of an entire theatre full of people) and said "I didn't help with the Olympics". I think I did it because he asked me not to. I am so nice. I have learned to think before I speak/act, but don't think that the stuff is not at the tip dying to be said or done. My most recent thing is picking up the Michael Scott "that's what she said". I have to be aware of my audience for this one.

So there you have it.

So i started this blog over a year ago and stumbled upon it. These were some of the top Snow College memories for me :

Fake Beer Party: So we bought a bunch of fake beer and took pictures like we were actually intoxicated. The pictures are great. There is one were me and Bridget are doing "16 candles" and I am pretending to cut her hair out of the door. There is one where Jason is pretending to be passed out and he has panties on him. Yeah we are party animals pretending to drink beer??

Finding the cat a "new home": We had a pet cat... we had to get rid of it since I guess you can't have them in college apartments. Bridget and I found it a "home" in Manti. We are going to hell.

Running to Manti: Chris and I ran the near 7 mile run to Manti. Jason says we didn't since it was just the welcome to Manti sign. Um... you drove past us going to Los Amigos so you have no room to talk!

Matching "oh my heck" shirts: We were so cool in these. Bridget and I went to random apartments to have people sign a shirt for Nate and we walked in on two people breaking up. Awkward

Jason and I making a mad dash for Walmart: So the Ephraim walmart closed at midnight so we had to hurry and pick up powdered mustard?? Jason said there was no time for me to get my shoes so he piggy backed me to the car, however he slipped on the ice and I flew into a bunch of ice covered bushes. I can only imagine how that looked watching it from inside

Homecoming: this dance was awesome! We walked to maverik at 2:00 am for yocream, played at Sanpete Thrift and I ended up switching dates with Bridget and eating instant potatoes and watching Cops. Real classy

Fugitive game: So we were in teams and had to make it from the walmart to our apartment complex on foot while Chris drove my car catching people. This was freaking awesome! I made Steve crawl threw a ditch though. If I remember right I think there were a good 10 people shoved into my ford contor, some of them in the trunk with 30 liters of coke. Or that Bridget walked to the other end of town and was 2 hours after everyone was done playing

Cops and volleyball: Me, Bridget, Bizarro, Chris and Staice played volleyball late at night then went into some apartments to do laundry. I may or may not have taken a can of spaghettios. One court proceeding later, I was $50 dollars poorer and relieved that I did not go to jail. I was terrified that I was going to go to jail. I wasn't very smart.

Plain girl: Bridget and I would go to subway every Friday. She got the nickname "plain girl" since she ordered bread ,cheese and chicken and nothing else for her sandwich. Oh, and I was "reliable" for a sandwich.

The KAGJ: Bridget and I had our own radio show Sexy Flem: The mucus is so think you could choke on it. Probably the most terrifying experience is when Bizarro jumped up in a creepy mask and smacked into the window and dropped 6 feet down since there was a window well right below him

The prank: So I switched Chris' phone into Chinesse. He had to find a Chinesse student to switch it back. I really messed with the wrong person. He then took my car and left it at the Chinesse food restaurant, as you can imagine my surprise when I came back from class and my car was missing. Then I decorated his room with Hanson posters. He decorated my whole apartment with my granny panties and bras. I stopped at that point, he won.

Things that must go

So I am a huge fan of x96 "Radio from Hell" show. They have a segment called "Things That Must Go" which I have a few of my own. If you don't care then stop reading, as it is sad if you are actually taking time to read my blog. You must be as bored as I am:

1. Christmas decor in March: A couple years ago I drove by a house on a warm March day and saw an inflatable Santa waving at me from his Snow Globe. I have been mad about it ever since.
2. Moms who pretend they are watching their children at the playground: If you have a small child, you best be up on the playground with them. My big butt is squezzing down the slide with my two year old, since I don't want him to plunge to his death being up there by himself. Seeing moms on the park bench taking about the next quilting relief society activity and how much they love there cricket scrapbooking machine to the other moms ins nauseating. Is it any surprise when your 3 year old falls off and starts crying? Get your size 2 Gap jeaned butt up there and start playing
3. People looking at you like you are some spawn of satan: So 4th of July 09, Brian was working and I had my cute 17month old boy with me wating for Breakfast at the 4th of july festivities. I was wearing a tanktop and I looked like I was 16 with my pigtails. So I really looked like a young scandelous teenage mom. This little girl in front of us turned and started talking to me. The mom grabbed the little girl and gave me the look of death as she pulled her daughter close to her side. It reminded me of Beauty and the Beast where they are scared of the Beast and the mothers pull their children to their side in fear. Don't judge me. I was 25 and more educated than she ever would be
4. People saying there is nothing wrong with Dylan: Let me give you a breakdown of my child who will be 3 in a few days: he can't talk, can't understand what is being said to him (show me another three year old that has no idea where their nose is when asked) chews on furniture, runs in circles while grunting and wringing his hands and can't point out objects when asked. It's not a "phase" he has autism. But keep telling me he's fine, because that will change it. And don't get offended if I make a joke about it. Humor has amazing power. Having a child who is "differently abled" is such a taboo topic. Ask me, I won't get mad. Unless you say something stupid. And he won't be potty trained within the next one maybe even two years. If this is a problem, you come have a stab at it. Good Luck
5. The numerous Land Before Times: Yep, some cartoon dinosaurs walking. The end, no more, one was bad enough

Thats all oh... I have another one... coworkers singing John Denver :)