The Cruel Reality of Caring for a Child With Autism

I know that most of the time I say positive things about having autism in my life, because I do truly love my children the way they are, but I feel it is necessary to share with you my struggles because I am human just like anyone else. Those who know me often tell me how wonderful I am because I always keep a smile on my face and work so hard to help others. I always say thank you with a smile and say it's nothing, but there is sooooo another side to the story. I am not going to mix with words here...as a Mom of 3 ASD kids, I have been through hell. Even though I might disguise this well because I put on a good front, deep down I am hurting. I hurt badly. People don't see the tears in my eyes just before I get out of the car with a smile on my face..If I didn't try to find the beauty in each day, how on earth would I keep going? I have been fortunate enough to have had a 14 year career in human resource management, which has equipped me with the skills to do what I am now doing. This makes my life worth something and so I do what I do, not for the recognition, but for my own self-worth.

Caring for any child with a disability is difficult, but a new study suggests that carers of children who had autism had higher levels of parenting stress.

An extract from a New York Times article quoted "The parents in the autism group had higher levels of parenting stress and psychological distress compared to moms of children with disabilities without autism." (Link to the article is provided at the end of this post.)

I recently raised the issue of sleep deprivation with my FaceBook group 'Survival Guide 4 Rainbow Moms & Carers (special needs kids). Not surprisingly, but with much frustration and personal sadness, was the number of Moms who personally wrote to me or posted to the group how they rely on sleeping tablets and other drugs to survive. This was no surprise to me because I have been addicted to sleeping tablets and analgesics (the strong ones!) in a desperate attempt to just get ONE DECENT NIGHT'S SLEEP! I messaged everyone this week about my high levels of anxiety that I attribute to sleep deprivation because I have had enough and thought it might be useful to others as well as myself if I shared my own personal struggles.

With three children on the autism spectrum, our house usually works like this: After putting Jacob and Aaron to sleep, Kristie struggles to get sleep and can be up until 12am. We can't get anything done around the house until she has gone to sleep because we feel stressed about her stressing at not being able to get to sleep. (This usually makes me feel really anxious and I start worrying about the next day!) Then Shane & I go to bed with a 1/2 clean home and make our way to bed around 1:30am. Low and behold, just as we are climbing into bed or not long after, one of our little boys makes an appearance. Whoever it is usually orders me to get them a bottle and go collect their dummy and ruggie from their room. Then 15-20 minutes later pesters me to take them to the toilet. Nappy then needs changing and sometimes even PJ's & bed sheets that are now wet through. Child eventually settles and we reluctantly lay our heads down for some sleep. BUT wouldn't you know it, a short time later the other son wakes up only to repeat the same routine (I guess they are identical twins after all). Sometimes this can be around 3 or 4am….. sometimes it is 6am.

Are you feeling tired just reading this, or are you shaking your head because this resembles your life?? Don't stop reading, there's more.....

Alarm goes off at 7am. Frankly.... who cares about that stupid alarm. I just want sleep! Alarm goes off for an hour when eventually the kids make us get up or we decide to make ourselves get up. Made panic takes over the house because we are going to get Kristie to school late again! School will be unhappy... more lectures about how important it is to get the kids to school on time.... Shane & I fight over whose fault it is we didn't get up early enough. Feeling depressed because of the late start to the day AND the house looks and feels like crap. I feel total despair. Shane comes down with a migraine and we can't stop fighting. More therapy forms needing to be filled in arrive in the mail along with ever increasing therapy bills. No one to call for help, nowhere to go, no in-home help to rectify the probems....simply because no services actually give you the in-home support you need to make things better….. What to do?

There’s still more, but I will stop now because I am starting to depress myself!

This week I had a particularly bad week. There have been a lot of factors here. 1. school holidays 2. change in routine 3. full moon 4. wet and windy weather 5. Constant screaming/demanding children 6. no sleep 7. no escape or a minutes respite away from the house (we do have in-home respite, but mostly too tired to go anywhere or we simply don't have the money to go out). 8. chaos in the home (I hate chaos) 9. messy & disorganized house.

That leads me to # 10. a desperate need to reach for the analgesic tablets in the hope they knock me out so I can't hear anything and sleep right through! I have only taken very few analgesics in recent times and only take them when my right leg sciatic pain gets too much for me. I had made a promise to myself since starting on a biomedical regime that I would no longer abuse my body by taking these types of drugs. I wish I had kept that promise to myself because although I had a good sleep that night, largely because Shane got up to the kids for me (poor thing only got 2 hrs sleep), it made me very sluggish. I couldn't wake myself up the next morning and spent the entire day in zombie mode. Then, I found myself getting more and more irritable, aggressive and angry. No one could do anything right and I ended up having a bad case of depression. I hadn't previously realized that this is the affect over the counter medication was having on me. I reflected on all the struggles I have had because of this feeling inside of me and felt somber when I realized I had done this to myself through self medicating. I have vowed to myself today to NEVER EVER take another one of those terrible and debilitating tablets again. I only hope I can keep my promise.

About 9 months ago I completed an extensive survey being conducted by the Women's and Children's Hospital in Adelaide, South Australia. This study was to look at the effects caring for a child with autism has on a Mom and their mental health. The study isn't completed yet, so it will be interesting to see what the outcomes are because I gave an honest and candid account of my everyday life! I was really excited to see, however, the following article from the New York Times entitled "The Stress of Autism", by Tara Parker-Pope, dated 14 July 2009. (http://well.blogs.nytimes.com/2009/07/14/for-mothers-the-stress-of-autism/) So much more research needs to be done on how caring for an autistic child, two or three, sometimes 4 or 5 even, has on the physical and mental health of us carers. We go through so much and our communities don't even know what it is we do go through, so how can they help? How can we expect empathy from our therapists, educators and neighbors when they get the impression we exaggerate everything? You can always tell when something thinks you are simply dribbling on about how difficult things can be. My personal pet hate is when you are trying to explain an autistic trait your child has and the person responds by saying “All children do that”. It seems that the only people who get it are our fellow ASD parents & carers.

HAPPY RAINBOWS
Allison :-)