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From Inside the Puzzle: Raising a Child with Autism

Getting Through the Bad Days

Published October 31, 2009 11:43 PM by Devon Asdell

It’s often difficult to write about the bad days.


This past week has been one struggle after the other. Aisling has been honestly feeling extremely under-the-weather due in large part to sinus drainage and allergies, but I finally discovered on Wednesday morning that she had been using her illness as an excuse to get out of going to class and to avoid school. She had a full-fledged emotional meltdown on Wednesday morning, after which I felt completely drained, rather hopeless, and like I must be the worst mother in the world since my child was so completely and utterly unhappy. I also felt as if I had not helped her develop healthy coping mechanisms for dealing with her issues. The rest of the week has been peppered with intense power struggles and angry outbursts, Aisling huffing and puffing when she doesn’t get her way or when she misunderstands something I said, storming off into her room and slamming the door, practically growling at me when I come in to check on her. My darling fiance, Thomas, in an attempt to help me see the bright side of things, pointed out that I would have plenty of topics to write about and explore from this week. While this is true, these are hard things to discuss. It’s embarrassing for me to admit that I’m absolutely clueless when it comes to certain topics, that many days I feel like I’m stumbling through the dark when it comes to parenting. I’m ashamed to admit that, even after all this time, I can still be really very afraid when it comes to all of this.


Part of the issue is that I don’t have much in the way of a barometer for measuring how “normal” emotional outbursts and self-deprecating attitudes are for ten-year-old girls. I was a very odd kid, myself — well-behaved and even-tempered to an almost frightening degree, most of the time. I had a little brother,  but he didn’t begin his emotional outbursts until much later in puberty. Logically, I might deduce the combination of hormonal changes that I’m sure Aisling must be going through along with the complications of autism as related to self-awareness, emotional relationships, and social interactions are what lead to her outbursts. However, I don’t *know* this for a fact. I’m not around a lot of ten-year-old girls, typically-developing or otherwise. This is why I’m so terrified that Aisling’s reactions may be extremely out-of-the-ordinary and may signal that she has deep psychological issues that I need to address in addition to the autism. Mostly, however, I’m just at a loss at how exactly to help her through these bad spots, to help comfort her and reassure her that everything will be okay. There is probably nothing worse than watching your child suffer and simply not knowing what you might be able to do to help.

On Wednesday morning, Aisling was still complaining about feeling bad. I was encouraging her to go to school, anyway, since she was obviously just suffering from allergies and she wasn’t running a fever. In the process of our conversation, Aisling confessed that she was afraid the kids at school would make fun of her for being sick, and basically said that she just didn’t want to go to school. She cried, she yelled, she talked about how ugly she was, how stupid she felt — I think she even used the phrase “I’m a fatty,” which really concerned me. She has such a low self-image, and no matter how long I argue with her and assure her that she’s beautiful, intelligent, wonderful, and loved, she just doesn’t seem to believe me. We’re reading The Feelings Book: The Care & Keeping of Your Emotions right now, and I have even tried referring to what’s in the book — how she needs to replace her negative thoughts about herself with positive ones, for example. Nothing seems to work — she still remains convinced she is ugly, stupid, and unlovable. She won’t hear any alternate views on the matter.

I’d assumed from things she’d said about the kids at school and her general attitude about herself in general that she did not have a good relationship with her peers. According to her teacher, however, her peers actually care about her a great deal — almost too much at times. When Aisling starts having a “meltdown” in class, they flock around her to make sure she’s okay. They try to calm her down and help her out however they can. If you ask Aisling about her peers at school, however, she’ll tell you that they don’t like her and that they pick on her all the time. I’m assuming Aisling often misinterprets what her peers tell her — for example, if someone doesn’t share her specialized, narrow interests, she often assumes that they must not like *her* either. When she was still obsessed with black holes, for example, she would complain that her school didn’t teach anything about black holes, and then she would make the assumption that no one at school liked black holes, and therefore no one at school liked her, either. It’s very possible that the kids are doing their best to be nice to her, but she gets the impression that they don’t like her because they don’t want to talk about rattlesnakes all the time and don’t particularly care about Pokemon. At the heart of things, it’s a communication problem — and I worry that this problem is strongly hurting her self-esteem, and I feel at a loss on how to try to help her through it.

I am planning to take Aisling to see a psychologist for her emotional issues at the beginning of the year. I’m hoping I might be able to get some useful feedback and perhaps some answers at that point. In the meantime, I know I can only do the best with what I have, and I just have to keep trying to help Aisling see how wonderful she is and how much she is loved. Still, weeks like this are hard to get through. My own self-confidence falters, my patience is tested, and I often simply don’t know what to do. It’s easier, now, that I have so much help day-in and day-out from my fiance — a luxury I never really had before — and Thomas is often much more patient than me and much better at knowing the “right things” to say to help Aisling feel better or at least to help her understand whatever situation we’re trying to deal with. All the same, weeks like this are still difficult — for all of us.

posted by Devon Asdell
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5 comments

Hey!  So glad to read your blog and to see it included in Advance.  I am originally from K-ville myself...Go Vols!  "Bad Days" are bad  for both of you...I know.  I also have a daughter diagnosed with autism, 9yo now.  However, I have the mixed blessing in that she is a twin.  Her twin is NT so I have the advantage of seeing normal development for immediate comparison....and the disadvantage of seeing normal development for immediate comparison.  Depending on the day and my frame of mind.  They also have an older (by 2 1/2 yrs) sister that also helps me know what to expect..:-).  

    One blessing that we currently have is our daughter belonging to an HFA/Asperger "playgroup" where she has a safe place to talk with other girls who face the same issues she does with a counselor.    Hang in there!

~Mel

Melanie, OTR/L November 1, 2009 6:41 PM
Jacksonville FL

Dear Devon,

Speaking as a mother of a shy and sensitive girl, now young adult, I think you are doing well by listening to your daughter and helping her see her world accurately. Stay close to her and talk and listen. This  is so important for her to trust you and learn from your guidance. As you know, one of ASD people's greatest deficits is their difficulties with engaging (and interpreting) appropriately through social interactions.  You can and are helping her learn how to interact successsfully with her peers. I think this is a big challenge for all girls her age. Hormones are kicking in and they are getting lots of subversive messages about who they are and how they are supposed to act.  I think is is very important to help her make good friends through a variety of contacts, sports, creative outlets, science clubs, maybe youth groups at church, family friends and school. Having a few trusted friends who have common interests, through a variety of outlets can help her feel more confident in her relationships and help her ride out the school peer pressures that will continue to become more complex. I found that this was invaluable for my daughter . She still has most of these friends and this has helped her develop new friendships. As you know,  depression can accompany ASD and you want to help her maintain her self esteem and be aware when you need professional help.  I think you are right to  seek professional help through a counselor or psychologist but make sure your daughter feels comfortable with that person. Of course what you do is your own choice. Best of wishes to you.

Karen Hargus, Pediatrics - OTR/L November 1, 2009 1:21 PM
Tacoma WA

 Dear Devon:  First of all, I want to assure you that everything you have mentioned is perfectly normal, Aisling's feelings of insecurities and your feelings as a parent.  I am new to your blog, so I am not going to comment from a professional perspective, but instead will put on my parenting hat.  I have an 11 year old daughter and we are going through the same things that you have mentioned, the hallmarks of adolesence are very evident in everything that you have mentioned.  The lack of self-esteem, the stomping off, the grunting... I could relate to everything that you said.  My daughter does not have autism.  I can appreciate your need to seek outside professional help, but first and foremost you need to maintain that relationship with your daughter.  Let her know that she can trust you no matter what.  Love her no matter what, even on the bad days.  Sometimes, our kids need to simply know that we are here for them and that we can sit with them and listen, not necessarily find just the right things to say.  More than anything, kids want our time.  This tells them that they they are important to us.  Next, our feelings of self-esteem and accomplishment do not come from words - instead, they come from doing!  Find something that Aisling is good at. Let her know that everyone can't be good at everything.  She already knows her strengths and weaknesses, you just need to help her to identify them and access them.  Maybe school is really difficult for her - that is okay.  Let her know that.  Some things just come harder to us.  She will gain her self-esteem from a sense of doing and a sense of accomplishment.  Kids know when they really deserve our praise and when it is just lip service.  Is she good at art?  Someone else mentioned dance?  Theatre classes?  Choir?  As far as the peer relationships, my daughter is painfully shy.  What I have always told her about her friends is that only SHE can let them know what kind of a person is.  She needs to let them know who she is as a person and give them a reason to befriend her and like her.   Let her know that maybe they don't talk with her because they just don't know her well enough.     I hope that you will find comfort in knowing that as a parent, everything you are going through is so normal for mothers and daughters.   There are also other social networks in the community that many kids can find friendship and support, such as a local church or synagogue.  This has been a tremendous support for my children.  Not every chlid feels completely comfortable and welcomed in the school environment.  There is very little time for social interaction and most kids are just trying to find their place in the pecking order.  Focus on outside of school activities instead.  Good Luck!  My thoughts and prayers are with you.  Blessings.  

Margaret, School OT - MA,OTR/L, ECSE November 1, 2009 11:09 AM
Hastings MN

I found that dance and creative expression ( creative writing, musicial instruments, art) but mainly physical activities ie sports or dance were a great outlet for girls growing from 8-15. If  you can locate a class that would work for your child I recommend dance of any kind. I feel it is very integrating for girls and takes them out of their heads into the body.

Barbara, OTR November 1, 2009 9:04 AM

The joys and struggles of growing up as a severely autistic child and young adult are described by musician and artist Donna Williams in her book and Facebook blog. I have also heard her speak via videos and she has helped me to understand what not and who to do in addressing sensory issues and communication. She does state that sensory overload affected her ability to reach out to the 'alien outside world" and make meaningful contact. Eventually her mother found nutrititional, sensory support (Irlen Lenses to address severe visual stress and distortions) and her own artistic expression who helped her to emerge and give up many of the behaviors others viewed an anti-social. Her mother's research and determination to find solutions to the many complex issues facing her autistic daughter led to Donna's ability to make contact and lead a very vital and happy life filled with interesting endeavors. I pray for you to find support and solutions to help you and your family along this fastenating journey.

Shoshana, OT and Visual Perception/Scotopic Sensitivity Synd - Occupational Therapist, Special Educator, Irlen Di, Irlen Visual Learning Center of MD November 1, 2009 6:46 AM
Baltimore MD

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