Looking for the Helpers

We’re now through our first six weeks of Applied Behavioral Analysis (ABA) therapy and Olive seems to really be enjoying having the therapists stop by the house every day to play with her. The door bell rings at noon and she comes running for the door squealing, “It’s Ms. Gabby” or “Ms. Denyse! Ms. Denyse is here!”

I am so thankful to have such wonderful therapists working one-on-one with her and I am so happy that we had an early diagnosis so she is receiving this help before she begins a K-12 program.

However, it does present an interesting dynamic and has required an adjustment on my part. Having someone in your home every day that isn’t family and not quite a friend (in the sense that they’re there to provide a service) is a little awkward. Imagine if your child’s teacher came to your house every day to work with your kids. While it would be wonderful to have such attention showered on your child, it would feel strange to have what you would consider an outside entity in your home on a daily basis. It’s not a bad thing, but requires getting used to. The first week I kept the house immaculate. The kitchen was clean and the sink was empty, floors were washed, the couch cushions were laundered, the table was empty, and wiped down and all dog poop was picked up.

By week three, I was constantly apologizing for the state of my home. “Oh, sorry, we went to the park this morning so there wasn’t any time to clean!” (Also, I decided drinking a second cup of coffee and talking to friends on Facebook was really more important this morning.) There’s a sheen of dog drool on most of the couch, the only dishes that are clean are the ones that were dishwasher safe, you can’t see the kitchen counter, the floors were mopped three days ago, there are veritable land mines littering our back yard, and it looks like Toys R Us projectile vomited in my living room. I understand that these are people who I’m sure are just as imperfect as I am and see loads of houses that are *hopefully* in worse shape than mine, but from what I can tell the therapists I have worked with so far, either in ABA or in speech or occupational therapy tend to be on the younger side and don’t have children of their own. Its one thing to work with children every day and realize that their parents have a lot on their plate, but to come into someone’s home and see the chaos first hand is another. I know I’m a hot mess, but I hide it fairly well in public. My home is supposed to be my private space to let my freak flag fly. Walk around in no pants, take off my bra, binge watch Shameless on Netflix (when the kids are sleeping of course), and eat crap straight out of the bag/carton/box. Basically, when I’m home, I need to not have to pretend like I have my shit together. I just don’t feel comfortable doing that anymore. I still constantly feel like I’m readying for company (or failing to do so). Plus, the contract didn’t explicitly say this, but I think its implied I’m supposed to wear pants during sessions.

Blue presents an interesting element to this new schedule as well. For logistical and liability reasons, I can’t have him in the house with us during sessions so he stays outside. He’s not aggressive normally and I’m not concerned about him biting them, but he becomes very excited when we have guests in the home and tends to jump and mouth (a habit we’ve tried and failed to break, even with training). I can’t run the risk that when my 160 pound dog jumps on my 125 pound speech therapist she will fall and hurt her back or twist her knee. Also, no one wants to constantly wipe the drool from their crotchal region every ten minutes while they’re at work. I could crate him, but if he’s crated while company is over he barks like Kujo non-stop until he’s let out. I can’t stand it for more than five minutes, let alone three hours. My solution has been to keep him in the house with us right up until session and then putting him in the back yard just until it ends. With temperatures being 90 degrees + the last couple weeks, we’ve had to be creative. We’ve planned some outings when possible and the therapist has conducted parts of the session in Olive’s bedroom so Blue and I can hang out inside the living room and he can get a break from the heat. This backfired, when one of the therapists forgot that he was in the living room and she came back to get her water and clipboard. Blue charged her and thoroughly slimed her yoga pants trying to sniff her and then upon deciding that she was friendly, tucked his head between her legs and tried to carry her back into the living room with him. She finally understands why I keep Blue outside during our sessions.

The other aspect that makes life more challenging given that my three year old has a busier schedule than I do these days is that now when something comes up that makes it necessary for us to cancel or reschedule something, I feel like Olive’s personal assistant. For example, last week our air conditioner broke (of course while Matt is gone). So in between passing out snacks and putting Twice Upon a Christmas on for the third time (in July no mind you), I was both yelping AC repair places and leaving messages with them and then texting her ABA therapists to let them know of our predicament and would they be able to meet us at Play Town for session instead of our house? And then the kids and I were taking turns passing colds around this last week and I had decided the night before that we were all just a little too sick for therapy. So I had to call or text five different therapists the next morning to make sure to let them know in enough notice to make sure we wouldn’t be charged for our sessions. I never had to jump through this many hoops when I had to call into work sick when I was actually employed.

This is our life now and although I grumble, its just because I’m a crotchety old woman at heart. I wouldn’t have it any other way. Olive is getting the care she needs; care I couldn’t provide without much needed help. And the silver lining is that I have actual adult company during the day (although I try to stay out of their way) and someone to keep Olive busy so I can focus more on other things if only for a couple hours during the day. Whenever I feel myself resisting this new normal, I try to remind myself what Mr. Rogers would say:

When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.'” — Fred Rogers

 

 

3 thoughts on “Looking for the Helpers

  1. I too have a daughter that was diagnosed at close to 3 years old with high functioning autism. I know you have experienced it too, but doctors and therapist all say it is sooooo rare to see a GIRL with autism. My daughter is now 12 years old. She is now mainstreamed and only goes to resource for study hall (in case she needs more one on one help). But it was a long road. I never was a parent who pushed for main streaming, and each child is different, but my primary goal was for my daughter to actually learn, and the mainstream classrooms when she was younger was not the place for her to do it in. Another thing no one told me, or they aren’t quite advertising, is be aware that when your daughter goes through puberty there is more likely of a chance she can suffer from depression because of her autism. (Psychiatrist and Therapist say that because their fight or flight or reasoning part of their brain in impaired, they are more likely to suffer depression and have suicidal thoughts….scary I know). My daughter went through puberty early 5th grade, and suffered from depression. I just wish someone had told me to just be aware and more watchful, and look for the signs. So I am passing the information on to keep in the back of your mind for the future. I love your blog. So honest and funny. My daughter has come soooo far, but there are days where we have set backs too. It is also funny how men and women handle hearing the diagnosis. I cried and thought about will she go to prom, have a career, get married, have kids, and all my husband asked the doctors was “will she be able to play soccer”. Happy to say she played soccer when she was 9 and 10. Just still laugh at that memory because men think so differently then women. Feel free to e-mail me if you ever want to talk to another Mom of a GIRL with autism….because it is so rare you know…..ha ha ha.
    Nikki Castoe

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    1. I’d second what Nikki has said above about Puberty! … I’ve heard Autism and Adolescence called A²… It really ramps things up for a lot of kids with hormones running rampant! … New difficulties will emerge, often including anxiety/depression… Often self-hatred, eating disorders and other forms of OCD… All seem MUCH more common in ASD than the general population! … Don’t believe a 12yr old can’t be genuinely clinically depressed – they can, I’ve seen it and it’s devastating… In some ways I think it’s even MORE important for parents of kids with ASDs to subscribe to the idea that: “my child’s mental health is more important than their grades’

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  2. Hi, I’m a 39 yr old Autistic woman (original diagnosis was the no-longer used ‘Aspergers Syndrome’) with a gorgeous 10yr old daughter who is ALSO on the Autism Spectrum.

    It seems to me from what I’ve read of your blog you love your daughter very much, appreciate that her Autism gives her quirks and differences that sometimes MAY get in the way of living a peaceful life BUT in other ways brings increased interest and joy into your lives.

    With THAT in mind it’s a little ‘scarey’ for me to read that after your Dr diagnosed your daughter with Autism he TOLD you the treatment was 15hrs/week of ABA!

    I would be MUCH happier to hear that he discussed with you the various ‘treatment’ possibilities including DIR Floor time, RDI, SonRise AND also ABA and suggested you do some research on each possibility, look at the pros and cons, and decide which method you thought would best suit your daughter/your family.

    On the ONE hand, I’m GLAD that your Dr ONLY recommend 15hrs a week of ABA… And that it’s HOME based and NOT centre based (yes, I do know people in the US whose kids with Autism get picked up every morning by a school bus and take for a full day of ‘therapy’ then dropped back off!)

    I like that it is in your home where you can supervise (and please DO) … I like that it seems to be play based (as opposed to table based) … And I’m guessing the therapists take a fairly ‘fluid’ approach using teachable moments in play rather than rigidly enforcing a strict curriculum of tasks to be mastered by every child in a specific order… IF so, THEN the program/therapists you/your state use DOES sound unusually good… And for THAT I am glad.

    HOWEVER, it concerns me when Drs / States / Insurance companies etc will ONLY fund ONE type of therapy! … Making NO allowances for the fact that USUALLY ‘one size’ Does NOT ‘fit all’.

    Also, to this end I implore you to become acquainted with some of the stuff out there in the Blogosphere written by Autistic ADULTS… Many of who endured forms of ABA as children and/or as adults which were HIGHLY abusive… There is information out there about the experiences they had and what particular parts of it were bad… And opinions about what good/ok ABA can look like… Then you will know what to look out for in your child/with her therapy.

    While SHE is liking the Therapists themselves AND the activities they do together, it’s PROBABLY a good indication that the therapy is helping NOT harming… BUT please be aware IF she takes a dislike to a particular therapist OR therapy in general… OR if the sheer no. of structured hours are becoming overwhelming for her and/or others in your family… There are OTHER ways to do things… 15hra/week of ABA is NOT the ONLY thing that will assist your daughter… And don’t believe that without it you will be robbing her of a chance at a good future.

    Last, but NOT least, please a quaint yourself with the idea of ‘Autistic burnout’ … The more ‘normal’ an Autistic person tries to act, the more tiring/stressful it can be for them and their nervous system… Leading OFTEN to a. ‘nervous breakdown’ in early (or sometimes later) adult life) … Leaning to be / practicing being ‘normal’ often comes at a price (ESPECIALLY when they look and act sufficiently ‘normal’ that it’s deemed supports are NOT needed anymore) … And to this end I would strongly ENCOURAGE you to support your daughter to be the BEST person SHE can be… The BEST Autistic person (as opposed to being the best at ‘mimicking’ ‘normal’)

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