The Most Stressful Thing Is...

In IAN's Research Report on Family Stress, we share what families participating in IAN Research have told us about some of the major stressors in their lives.

What has been the single most stressful aspect of having a child on the autism spectrum for you? What strategies have helped you cope?

You can read our report on Family Stress (Part 1) here: http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_april_2009

Protecting other members of my family from harm during agressive tantrums. (Kicking, Hitting, Biting, Pulling Hair, Scratching, Spitting, Screaming... etc etc)

The only two methods (many have been tried) that seem to work are to take him out of the house and in cirumstances where someone is about to be harmed, restrain him.

I personally have sustained injuries during these episodes. They happen 3 or 4 days a week and last anywhere from 20 minutes to 3 hours.

That is the most stressful thing, not only for me, but for my entire family.

Bacerc, I would so agree. My child used to have terrible tantrums, and there was nothing that made the entire family more distressed. The constant outbursts, and the fear and dread of them, dominated every aspect of our lives. I couldn't work, we couldn't go anywhere, the school was calling all the time...I think I have PTSD to this day.

My child has been helped by a lot of things: medication; all sorts of social skills and anger management kind of training; just maturity as he grew older. He's a teenager now, and doesn't have explosive stuff like this anymore. I hope things get better for you, too!

The constant caregiver role and trying to make adjustments so my daughter can have "normal" experiences. Her greatest stress at age 11 is that her disability is not "visible".

I would say the most Stressful and frustrating thing is that certain Teachers who have no clue the life of the child of Autism lives and how the parents live.
Some think that because they teach different children, or have taught certain students with Autism that they are experts! Not ALL children with Autism, Asperg's or PDDNOS or etc. are the same. Certain teacher's think because your child is running around the classroom and quoting movie dialoge clearly re-inacting a Thomas the train movie- that they are merely pretending. It's not stimming or autism they say. The way they act, is meet with it's because they are a only child. The food aversion's, they are just picky eaters and he would eat what I provided or not eat they say.
Is the stimming, not eating, uncontrolled outbursts, boss like behavior or not understanding danger, toileting issues etc. bad? Certain people with blinders on seem worse to me.
I feel so sorry for people who are made to second guess their ability as a loving parent because some teacher's just simply are unwilling to listen. I have provided many book's on Autism to teacher's and it is always meet with a stern look, and a reply of Thank you for the information. I haven't found what work's in this situation yet. Hopefully as I learn the process I can become more helpful.
Never doubt that you are a GREAT parent and children with whatever disability are the true BLESSINGS in all of this and they come 1st no matter what anyone says. We know and live the life we live with Autism. People add stress, along with the battles of Insurance com and etc. Not Autism in my opinion.

The most consistently stressful thing for me (and my children, I think) has been school. Whether it's the noise in the cafeteria, endless hours of homework, bullying, or ignorant district personnel, we have had *so* much trouble with simply getting our sons a decent and bearable educational environment. Three of my children have AS, and you would think the district (a very large and wealthy one) had no idea at all about how to educate children with AS. At the elementary school level, when my sons were most vulnerable, the district offers either general ed. placement with no aide or placement in an ED program if they think the child is too disruptive in general ed. Neither option works very well. It falls to our children's teachers and us to make the best of a bad situation. IEP meetings can be a nightmare as we fight for appropriate services that the school has no intention of providing. The whole thing makes me angry and my children miserable. Why does it have to be so hard?

Dear Suetois,

I feel the exact same way. Why does it have to be so hard? Well, as I have learned by being one of the Principal's spouse it has to do alot with $$$.

Special Ed. Cord. are only givin a certain budget. According to certain states, Each disabled child gets a little over $10,000 a year as a typical student gets $5,000. This all goes into the Special Ed fund. It is disbursed to pay for programs such as Speech, OT, extra workshop's etc. They will not provide a Aide to any child if you the parent ask. It has to be requested by Dr.'s and Dev. teams, etc. It should list why the child is disabled and how it effects their performance in school. The parent's have to have documented incident's that have happend at school and teacher's comment's about child's work or lack of progress if any, to make your case for your diasbled child. Then the IEP team and school is forced to listen and see your child's side. Document, tape record {giving the school notice 1st}If it is legal in your state IEP meetings, write everything that happen's down, Keep your child's homework that reflects what needs worked on. Make sure it is legal before hand. This is just a suggestion. Wright'sLaw.com has great references to help advocate for children.
Remember, it is better to approach it as a calm, rational parent instead of showing the school's that you get angry. This they the school document's and it is and will be used agains't you and your child. The school is not agains't the child they just need information and proof of the child's diability 1st.

The system need's fixed in certain area's but if you approach everything in a combative way, you will fail. Most of all, the child looses. I have learned to be patient and try everything to convince them of my child's side. Hang in there, I belive God protect's the little children.

Dear Blessedmom,

"I have provided many book's on Autism to teacher's and it is always meet with a stern look,"

I am in the process of becoming a teacher and I WANT TO HELP AND LISTEN. yes, i may never know the life or a child who has autism or a parents life, but i want to help and listen to what that child and you have to say. I truly mean this from the bottom of my heart, i want to listen. I am actually going to start working with kids who have autism soon, so i really would love help.
Thank you,

Dear EarlyEduTeacher,

How Wonderful to hear. I would like to say that I do not view all Teachers as unwilling to listen. It is refreshing to hear that you really are sincere in wanting to put the child 1st and then the disability. Also, Thanks for passing out books on Autism.

This is part of what make's you a Early Education teacher. You haven't reached the burn-out phase yet and hopefully never will. I take it that you are going to work at a private school which only has children with Autism? If not, you haven't had to be 1 part of a team who has to listen to their Special Ed. Cord. and etc. I encourage you to keep your stance in helping the children but as you gain experience and years of teaching you will find how other's view things. We need more like you and in higher positions to make a difference and help these kids who desperatley need it. Best of luck to you!

Blessedmom

I am someone who is willing to listen and lots of people know that. they know that they can come to me and talk. When i work with kids (toddlers up to kindergarten) i tell them when they have a problem is let me know when you want to talk and i will listen, almost always within 1-2 minutes they come back to me and talk to me. parents know that i am someone who is always playing and "on the floor" with them. I still have 3 years left before i get my degree in Early Childhood Education and not working just with kids that have autism. I plan on working with other kids too. Yes, i will agree that each child is different and they each view things differently, just need to adapt and work around it.

>>The system need's fixed in certain area's but if you approach everything in a combative way, you will fail. Most of all, the child looses. I have learned to be patient and try everything to convince them of my child's side<<

Blessedmom, believe me, I totally agree with you. I've been dealing with school systems for over thirteen years now and have three kids with IEPs. I've sent kids to public school and homeschooled kids. I had one son in private school for a year. We see a psychiatrist twice a month--meds are a big part of how we manage our kids' issues--and a therapist for three hours a week (one hour for each of the three kids). I also have a child with Bipolar Disorder who doesn't have an IEP, and a son in college who's neurotypical. I am bipolar too, while my husband has all the earmarks of AS, but is one of the lucky ones who's found his niche in life and is thriving. I feel like I have more than my fair share of experience with this stuff, and considering everything else, school has been the root cause of more stress for all of us than anything else. (Concern over what the future will bring is a close second.)

What I've found works best is a professional relationship with the school. That means keeping up with documenting your child's situation. I just successfully overturned the IEP team's decision to send one of my AS kids to a self-contained ED program because I had documentation on my side, whereas they made the mistake of *not* having documentation on their side. When push comes to shove, you have to be able to push back and you can't do that if you've been overly concerned about being seen as "nice" to the point of not having a telephone log, notes from meetings, a file of test results, knowledge of your child's legal rights, etc.

OTOH, I'm not above letting the school salvage their pride. They presented my recent "win" as a matter of my not understanding that the decision of the IEP team doesn't determine what the child's services will be. Of *course* we can do things my way instead. Fine. Why though? Because I started the appeal process, contacted Monitoring and Compliance, and let them know that we were working with an advocate. M&C did my work for me once they were aware of my intent and their lack of documentation. Is that adversarial? Yes, but in a professional way. No screaming. No making threats. You don't have to be obnoxious, but you do have to be implacable when the situation calls for it.

The thing is, I personally would much rather not make waves of any kind. It's very stressful for me. When it came to my neurotypical son, I never had to fuss at all. My AS kids need constant vigilance both at school and at home or their academic situation would fall apart. Even then, the best I can get for them is barely good enough. If anything they experience far more stress than I do. I hate seeing my AS kids struggle and be stressed out and knowing that, most likely, their whole life is going to be like that. (Well, that's not quite fair. I have one Aspie who will probably turn out to find his niche in life much like his father has. The other two, though, are going to need a special level of support in the world.)

Sigh. I'm rambling. It was much nicer when I was back in the early days of dealing with AS when I thought the school would help me cope and that, somehow, I would be able to help all my children achieve independent futures so that AS could be simply part of who they are rather than something they're always going to need help with.

Sue

Dear Suetois,

It look's like you have had more than your share of experience's with the school's. I am just getting started, my child is entering kindergarten this fall. I agree with you on all point's but I have a different role from the inside of the school system. I am doing everything in my power to help these children and still have a job to support my disabled child. Do they the school's personnel alway's listen? Usually, it depend's on whether or not they think they are know it all's. Thank's for the advice and I will continue to document thing's to help my child and other children as well. I have found that most parent's where we live do not know their right's or how to complain and fix a situation. They just sign any IEP the school put's before them and that infurates me.

Honestly, just not knowing from minute to minute what will trigger him to start hitting himself or vocalizing aggressively. My child is the most severe autistic I have ever seen, which is very significant. I am a social worker and have at least six children on the spectrum on my caseload and am called in to consult and evaluate on scores of others, yet my child is by far the lowest functioning. I am in love with my boy, truly, but I have to wonder, am I really up to the job? He's only five and every day there are new challenges. I agree whole-heartedly with what everyone has written.

the most stressfull thing for me is my son aged 5 with autism is always trying to jump out of windows and doors...it realy scares me ive had to screw every window down put locks on every door...its realy stressfull infact i have depression and suffer with panic attacks as im always worried and i am 2 scared to evn sleep i dont want my baby hurting himself

Crystal Child and funny mummy - thank you for your posts, and for sharing your stories of how very challenging raising a child on the spectrum can be.

Crystal Child, it must be very hard to be in a situation where you can't help but compare your son to other children with ASD, and then find him to be so challenged.

I think parents often ask what you ask: Am I up to it? Still, they soldier on, adapting, even thriving as time goes by. I hope you, as a social worker, are able to get some support for yourself, especially since you are spending your day offering support to others.