The Most Stressful Thing Is...

I'm not sure there is any one thing for me really that I can say is the most stressful. As a single mother who has been raising a child on the spectrum by myself for the last 3 years, it is all stressful, joyous, eye-opening, and challenging. I am not discounting the difficulties couples face when figuring it out together, but it is also very hard when you have no one to share in the responsibility of getting to evals and doctors appts, working out IEP's, trying to work so you can provide for your child, and still be able to devote the time necessary one on one with your child. I have been very fortunate as far as my immediate family goes in terms of understanding. A cousin actually changed her college major and got her degree in child development and now works with special needs children because of my son and the progress he has made with the help of some amazing teachers. I have an amazing support group in my friends and family, but it doesn't change the every day challenges many couples face together, and single parents of spectrum children face alone. I wish the study on stress in relationships dealt with the the effect of having a children with autism when trying to start new relationships when you are a single parent with an autistic child as well as the effect it has on couples dealing with it.

Hi T'sMom, and welcome to IAN.

Thank you for sharing your thoughts about the struggles that single parents face when raising a child on the spectrum. We are actually considering developing an IAN Research questionnaire about relationships, and your post has reminded me that we need to consider not just those that lasted or ended in divorce, but the situation of a parent who ends up raising a child with ASD on his or her own.

I am so glad that you have such great support from your family. Your cousin's decision to study child development is especially inspiring!

I would have to agree....my most stressful thing is the school. You can treat the symptoms of ASD,help prevent triggers if known,and change or cope with behaviors.
You CANT do so with the school or change schools every time they fail your child in services or lack there of,keep having them repeat grades etc.
I am one that has had and done what has been spoken to do in the school system. It all comes down to what IAN is here for....AWARENESS !!
I recorded IEP meetings after them all of a sudden having amnesia or not having word by word (there way of twisting what you say)in their notes,kept suspicious class work, homework that was asked of him not on his individual needs,not abiding by IEP and modifications to be in the general ed by the IDEA act. In some ways is more hassle than should. As said before not a one fits all situation with these special and unique kids that will soon need these skills and academics in the real world to read and be independant and not to get cheated on return change when buys something.
I have all done everything suggested to do and did I mention also requested tests,meetings,retention in K,in writting.
I have researched and know the IDEA ACT and NO Child Left Behind Act inside and out so they cant pull the wool over my eyes and bully me in to something that may not be best for my ASD child.
It all pays off in the end and i got district in on the meetings and got what I asked for.
Yes it does come down to $$$$$ especially now with the cut backs.I have even gotten comments from them (school officials)that more parents need to be more involved and strong for their child as if they are testing us.
I want my son to be as sucessful as he can, I wont deny him any part and I will fight until he gets what they propose initially. NO CHILD LEFT BEHIND AND TREATED EQUAL as if no disability. This is what my most stressful thing has been.
Yes the meltdowns are horrendus at times at home and in public especially when fixaited on something and he doesnt get it. but all those can be worked on and figured out by self,family friends. (more controll over and decision over how to handle.
In school you dont have that control that you should have as a caregiver/parent/one who holds the educational rights to our children. Yeah right,we are there to agree and sign if we disagree they pull this education background and fancy words,justifications to make it seem we dont know better. You cant get this experiance out of a book or classes straight experiance and understanding. This is what makes it so stressful

I think I posted here once about how school issues are the most stressful thing for us, with worries about the future running a close second. I'm about to swap those two things around. Our son with AS is currently functioning at about a 13 or 14yo level developmentally and behaviorally. However, he turned 18 a couple of months ago. This presents us with a common situation for parents of newly adult children in terms of the "child" being entitled to make their own decisions as an adult before a parent feels that they're totally ready. But when you toss a high-functioning disability into the mix, things get murky.

Our son had some fairly involved dental surgery a couple of days ago, and, as an adult, he had to sign the consent forms himself. The staff, though, picked up on his developmental level (without being told), asked about it, and decided to have me co-sign the paperwork because they didn't feel that he was competent to accept responsibility for himself. The nurse also recommended that we look into legal aid to formalize the situation. We had actually intended to pursue a guardianship for our son before he turned 18, but finances got in the way of doing that.

Anyway, today I called Legal Aid. The woman I talked to sounded unsure about our chances of having our son made our ward. She said guardianship requires the person to be completely incapacitated. He's not. So I said maybe a medical power of attorney is what we need instead, but she said that if he's functionally 14yo, he's probably not legally capable of granting a power of attorney because he's not a competent adult. Ack! It sounds like he's falling through the cracks the way things have happened so often before. I sincerely hope not. We have an appointment with a Legal Aid lawyer, so we'll have a better understanding of what can be done once we meet with him. Meanwhile, however, I'm really concerned that we're going to be told that we have no good options. Worry, worry, worry.

I'd like to hear about what other parents of adults or adults with an ASD have learned when they've faced similar situations. Thanks.

Hi Suetois.

I know you have hit upon a huge issue here, one that parents have far less guidance for than they do for IEPs, etc.

I recently explored what it would cost to get a will, special needs trust, etc. set up for my son (now almost 15 years old) and found the cost was $2,500 -- a substantial impediment to taking care of this kind of business for a great many families.

I know little about this topic, but was able to find a couple of resources our readers might be interested in:

An article on legal and financial planning on the Foundation for Autism Support and Training website: http://www.foundationforautismsupportandtraining.org/lifePlanningLegal.html

On about.com, Tips to Help You Plan for Your Autistic Child's Future: http://autism.about.com/od/financialresources/a/tipsmoney.htm

Another thought: there are often workshops on this topic given at various family autism conferences. There may also be workshops held by agencies helping transition teens to adult services, depending on the state.

In the about.com article, they say, "It can be tricky, though, to plan for an adult on the autism spectrum. Adults with autism can be complicated people, and many are bright and capable. Yet with all their intelligence and ability, some adults with autism have a very tough time handling the day to day challenges of paying bills, cleaning house, cooking meals, and all the details that go with managing a household."

This is what puts parents in such a quandary. If someone is clearly not competent, it is easier to know what is necessary. What do you do when someone is very intelligent, but still needs a measure of protection because they are so socially naive or have such poor executive function?

I hope other parents will share their experiences here.

Thanks again for the articles, Connie. The second one pretty much confirmed what we're learning ourselves. The first one confirmed that we need a lawyer to deal with this stuff. The right thing to do in this situation is not at all clear. Our son is very intelligent--and pretty impaired. He has the hardest time figuring out what to do in all sorts of situations from simple to complex. He wouldn't have a clue about how to take care of himself if something suddenly happened to us. I've been envisioning a limited guardianship--one that would preserve his right to vote and other things, but allow us to take care of him in other ways. He's still maturing, and we're hopeful that this would only be necessary for 5-10 years. We really do think he's going to 'get there,' just not on the same schedule as typical kids. Whether or not we can set this up legally is the question. If anyone reads this who has experience with this, I hope they'll share what they've learned.

Thank you Suetois for your enlighting question! I had NO idea that we would have to deal with this at 18. I thought since they are found disabled that guardianship is automaticaly the parents. WOW! My son was changed this summer to high-functioning Autism and we did set-up a special needs trust that we can change as he gets older. he is only 5. I will definately be reading to see how to handle this very stressful situation and hope I can take knowledge on how to prepare. Thanks!

Haveing to deal with the looks and coments of others when takeing my son out. He has fits at the grocery stores when we dont buy a item he wants or yells when excited. Others look at us like why dont we do something as he has a meltdown in the cart. I want to yell at them he is diffrent! I know he dosent look it but this is hard on him to!

Hi turtledove, and welcome to IAN.

I can't tell you how many parents have shared this experience. You are definitely not alone. You might want to take a look at our articles on family stress, where other parents are quoted about this:

Part 1 focuses on child-related factors, like behavior: http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_april_2009

Part 3 includes a section on social isolation (which often results from child behaviors), but also discussed the resilience of these families: http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_sept_2009

I recently saw a button worn by a child with autism that said, "I have autism. That explains my behavior. What's your excuse?" I'm sure his parent had experienced exactly what you are talking about - a very painful, critical remark or look from a stranger who did not recognize autism when they saw it.

blessedmom wrote:

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.

In defence of teachers: They are trained professionals and deal with 30-60 or more individual learners each year. Each is different, but they are all expected to meet the same standards. Most are not trained to meet the random charactoristics and behaviors exhibited by ASD learners. I can not think of any profession where people can litterally walk in off the street and tell you how to do your job. So I can understand the defensiveness of teachers. Seldom do you see someone off the street telling a firefighter how to put out a fire or a lawyer how to try a case. Parents think they can tell the teacher how to teach their child, excluding of course, the other 60 odd students the teacher has to educate, and in some case match the IEP accomodations of 15-20 other learners in EACH class.
Communication and consistancy is key. Modeling and reiforcing communication stills and learning to be respectful and listen/respond to the istruction that is being given is key. Each ASD student is so different, just like their home lives. In school the system is the same for the other students, accomodations too. The round peg has to fit into the round hole at some point, but it will take many hands working together to do it.
Fred A.

I would like to add that I am a teacher, and that I am a teacher of a child with Autism. I am well aware of how the districts play the game. I am also aware that through years of trial and error as being a parent of a child with autism, what eventually worked and what failed. I simply am trying to enlighten a district who has only had 6 children with Autism Disorders come through in the past 25 years. Being in a rural area, this is not always a easy task. Especially trying to ascertain services that are appropriate for a child no matter if they are disabled or not. I think being stuck in how you where taught in College and have been doing the same for years on end doesnt always work. I believe Teach the Child not the group. Individualized instruction doesn't mean sameness. Thanks

As a single father to my 7 yr old son, I can relate to the stress. Often my son will, just out of the clear blue yonders, hit, kick, bite, slap, head bunt me, in addition to throwing toys at me, unfotunately hitting me with luck shots. Sometimes the episodes will last anywhere from 2 minutes to 20 or so minutes. I dont know exactly what causes that but I often sometimes wonder, given my work week schedule if that could have something to do. Ive been on vacation this past week and Ive experienced this several times so I am not so sure if my work schdul as anything to do with it. I sure hope that there would be a way to help or may be kennedy krieger can help.

Hi MB1977.

I'm so sorry to hear about your son's meltdowns. One thing I can assure you is that this occurs often with children on the autism spectrum. Many of them have "rage attacks" or "meltdowns," and some of them get pretty aggressive during these episodes.

See our section on "Mood Instability and Meltdowns," here: http://www.iancommunity.org/cs/challenging_behavior/mood_instability_and_meltdown

See also our section on Meltdowns in people with Asperger's syndrome: http://www.iancommunity.org/cs/about_asds/aspergers_syndrome_meltdowns

Figuring out what causes these meltdowns can be challenging. All kinds of factors can play a role, from purely neurochemical mood issues, by which I mean brain chemistry is off kilter and the child is finding it very hard to regulate him- or herself, to what's going on in the environment. (Is a child with sensory issues finding his home or school too loud, lights too bright, people crowded too close? Are academic demands too much, or social stresses too much? Are the family life issues that affect many families and kids affecting the child, by which I mean things like job loss, parental conflict, money problems, a new sibling?) Also, some children who are non-verbal or otherwise have trouble communicating their needs can have meltdowns out of pure frustration.

In brief, it's important to look at the whole picture, perhaps consulting with your son's treatment team or a local expert on ASDs. Solutions may include:

1) Changing the environment at home or school so that it creates less sensory or stress overload and the child is more comfortable and better able to cope. For example, some children who are melting down in a crowded classroom may do much better in a smaller one.

2) Finding ways to improve communication and "read" the child, responding to distress before a meltdown (although I know some of them seem to come out of the blue).

3) Medication (especially if the explosions and inability to self-regulate seem to happen no matter what else you do). Actually, the only two FDA approved meds for autism, Abilify and Risperdal, are directed at "irritability," by which they mean mood instability and meltdowns. See our article on meds being used by children participating in IAN Research: http://www.iancommunity.org/cs/ian_treatment_reports/medication

4) Other techniques, from bonding through "floortime" (where you focus on your child's interests and follow his lead), to massage (to help kids who crave deep pressure and seem to need it to self regulate), to making sure a kid who is hyper and "spins out" gets enough physical activity to keep him or her in balance.

Each child and circumstance is very individual, but I hope this list will provide you with some ideas.

thank you that list does help. I dont know if this helps or not but my son, being on 4 different meds, of which, 2 are actually the samer kind--Focalin, only difference is is that one is the generic brand which he gets 2x a day and the other which is the XR brand gets once a day both of them help keep him calm then abilify somewhat helps but I dont really see any difference. The bed time one Clonidone actually makes him sleep Before he got on it, he stayed up all night and day. He cant seem to express his feelings Is that part of autism?

Hi MB1977. You were asking if being unable to express feelings is part of autism. I guess that depends on what you mean by "express" them. A meltdown can be one way of expressing them quite well!

In general, though, it's the social-emotional world that is hardest for people with autism to "get." They often have unique ways of seeing the world, and can feel very misunderstood. As for understanding the emotional states of others, that can be a challenge. Teaching a child to recognize emotional states -- both his or her own and those of other people -- is often a part of intervention. There are a variety of programs that show pictures of facial expressions and try to teach children what emotional state goes with what expression. For example, see: http://www.iancommunity.org/cs/therapies_treatments/transporters_article

I just saw the new HBO movie about Temple Grandin, who is autistic and was one of the first people to show people with autism could achieve much with the right supports and acceptance. In the film, she has no consciousness of how her own face looks when she is angry or happy. Her aunt takes pictures of her when she is expressing various emotions, and then uses the pictures to help her learn what she looks like (and what other people look like) when they feel a certain way. So, to answer your question, yes - this is part of autism.