I just want to summarize this article in this post and if anybody is more interested in reading the entire article, please let me know and I will send you a full copy.
The article zones in on 6 areas that cause family stress: Child Behavior, Exhaustion, Treatment Disappointment, Getting Treatments, Setbacks, and Worry for Future.
Thousands of parents participated in this survey with children at varying places on the Autism Spectrum and the following are the percentage of parents that reported Moderate to Great negative impact on their stress in these areas:
Treatment Disappointment- 46% Exhaustion- 48% Getting Treatments- 68%
Setbacks- 70% Child Behavior- 72% Worry for Future- 88%
I found the entire article useful in that it really justified how I have felt for the past year with comparing my feelings and thoughts with those who providing comments in the survey. Below are several areas of the article that I felt were very important and behind each part I will say how this area affects us.
- Two areas were frequently mentioned by parents as contributors to stress: meltdowns and aggression. Extreme behaviors frequently result in social isolation for the entire family as the parents stick close to home, to routines, and to familiar environments that are comfortable for the child with autism to prevent any meltdowns or other people's response to them. (I COMPLETELY AGREE WITH THIS AS WE HAVE FOUND BRYCEN RELIES ON HIS ROUTINE EACH DAY AND THAT ROUTINE HAS TO CARRY OVER TO ANYWHERE WE VISIT OR WE ARE JUST SETTING HIM AND OURSELVES UP FOR DISASTER. MANY PEOPLE MAY WONDER WHY WE WON'T ATTEND FAMILY FUNCTIONS, OR WILL ONLY ATTEND A SHORT TIME, AND THIS IS THE REASON. WHY CAUSE ANYONE, ESPECIALLY OUR CHILD, UNNCESSARY PAIN AND DISCOMFORT, BY OVERSTAYING OR ATTENDING PLACES THAT WILL MOST DEFINITELY CAUSE SEVERAL HOURS OF DEALING WITH THE MELTDOWN AFTERWARDS).
- Sleep disruption...do I really need to say more as most children on the spectrum have sleep issues. (IN BRYCEN'S CASE, HIS BRAIN DOES NOT PROCESS MELATONIN LIKES OUR BRAINS DO THEREFORE HE CANNOT STAY ASLEEP. HE IS GIVEN A MELATONIN SUPPLEMENT 1/2 HOUR BEFORE BEDTIME AND THOUGH THIS HELPS HIM TO FALL ASLEEP FASTER, HE METABOLIZES THE DOSE VERY FAST AND THEREFORE WILL MOST LIKELY WAKE UP SEVERAL HOURS LATER. WE ARE LIKE PARENTS OF A 2-3 MONTH OLD BABY EACH DAY, VERY EXCITED WHEN HE SLEEPS THROUGH THE NIGHT AND VERY EXHAUSTED WHEN HE WAKES UP AND WON'T GO BACK TO SLEEP AS FAST AS WE WOULD LIKE HIM TO).
- Treatment issues...all treatment is not available in every town, nor is the quality of treatment the same. Transporting a child to and from therapy and fact that most therapies are only for hours each week, therefore it is necessary the parent be also trained in the therapy so that they can continue the treatment 24 hours a day/7 days a week in order to see any kind of results...this typically results in one parent of the child with autism either not being able to work, or having to work only part-time in order to be available for these things. In another aspect of this, parents and the child may invest a lot of time, money, energy, and hope in a therapy that ends up not showing any or only minimal results. No therapy has shown to work with all children on the spectrum, therefore it is a chance a parent takes when starting a therapy. This disappointment is extreme and typically grief follows each time. (UNFORTUNATELY WITH MIKE'S JOB, WE MAY NEVER LIVE IN A BIG ENOUGH CITY WITH MANY OPTIONS AVAILABLE FOR TREATMENTS. ON THE OTHER HAND, WE ARE LUCKY ENOUGH THAT OUR PRIVATE INSURANCE COVERED A DECENT AMOUNT OF HIS EVALUATIONS AND WILL COVER CERTAIN THERAPIES UP TO A CERTAIN NUMBER OF APPOINTMENTS IF A DOCTOR PROVIDES THEM WITH INFORMATION THAT THESE ARE NECESSARY. WE ARE ALSO LUCKY IN THAT BRYCEN WAS APPROVED FOR MEDICAID SHORTLY AFTER DIAGNOSIS AND MEDICAID TYPICALLY PAYS FOR MOST RESEARCHED AND AVAILABLE THERAPIES. BRYCEN WAS RECEIVING THERAPY THROUGH THE BIRTH TO 3 PROGRAM AT THE LOCAL AEA AND INSTEAD OF SHOWING IMPROVEMENT, HE ACTUALLY CONTINUED TO REGRESS THROUGH THIS THERAPY.)
- Worrying for the future was the most stressful for parents of child on the spectrum. Yes I understand that all parents worry about a child's future and if they will be a respectable and responsible citizen...but there is so much more to this when you have a child with a lifelong disability. These parents have a lot more to worry about: prospects for independent living, employment opportunities, potential romantic relationships, whether the child will have any friends, being bullied in school, how the child will fare once the parents are no longer able to advocate or are no longer here, the stress on the siblings to take care of the child with autism after the parents are no longer able to, the child's ability to be safe in the community, and not being taken advantage of by people due to their lack of understanding. (MIKE AND I HAVE INFORMATION ABOUT SETTING UP A SPECIAL NEEDS TRUST FOR BRYCEN...MOST PARENTS JUST HAVE TO SET UP A BASIC TRUST, WILL, POWER OF ATTORNEY...BUT IN OUR CASE, ONLY CERTAIN ATTORNEYS ARE SPECIALIZED IN THIS AREA AND I'M SURE IT WILL COST AN ARM AND A LEG TO SET UP AND THEN OF COURSE REVISIT EVERY COUPLE YEARS AS THE LAWS CHANGE. I ALSO WORRY ABOUT THE STRESS THAT WILL BE PUT ON AUBREE WHEN SHE BECOMES AN ADULT AND MAY HAVE TO TAKE OVER GUARDIANSHIP AND RESPONSIBILITY OF BRYCEN WHEN WE ARE EITHER NO LONGER HERE OR ARE UNABLE TO. SHE MAY NEVER KNOW WHAT IT IS LIKE TO HAVE A TYPICAL SIBLING RELATIONSHIP AND MAY BE RESIGNED TO BEING A CAREGIVER FOR THE REST OF HER LIFE. THOUGH I HOPE SHE WON'T SEE IT AS A BAD THING, BUT IT IS A LOT FOR A SIBLING TO TAKE ON AS WELL AS LIVING THEIR OWN LIFE, GETTING MARRIED, HAVING THEIR OWN CHILDREN, ETC.)
These are just a few of the areas that this article stressed as causing family stress around a child with autism (and most likely any child with a lifelong, debilitating disability). I will provide a summary of the next two parts of the series soon: Work life and Finances & Relationships and Resilience.
No comments:
Post a Comment