This is a link to 10 Key Things To Do For Your Child With Autism shared by the awesome Ellen Seidman over at Love That Max. It was written by Kerry Peterson, Board Certified Behavior Analyst and Director of the TrainIn Program at Kaufman’s Children’s Center. It’s so easy to get overwhelmed, especially in the beginning, so read this list and take one step at a time.
Category Archives: autism
Since Bailey started her new school I have witnessed some of the friendliest children try to engage her. The kindness that the kids (and adults) have shown her leaves me utterly speechless. It’s such a breath of fresh air after the negative experiences she had at her previous school.
I have noticed a few instances, however, where Bailey has flat-out ignored a person who greets her. One morning as I walked her up to the school building, she was anxious while going over her little laundry list of worries. A boy called out to her from a few yards away and asked if she wanted to walk with him to class. Without a word she quickly looked in the opposite direction. The snub wasn’t directed at me but I sure felt the sting. When she’s so caught up with what is going on in her mind, she just refuses to give anyone else the time of day.
Another day, not long after moving here, we went to check out the local library and a little girl approached me to ask if she could say hello to Bailey. I was delighted and said “sure!” but Bailey just stood there and look everywhere but at the girl. Soon after the mother approached us and asked if this was the new girl at school. We made a little small tall, all the while I’m gently nudging Bailey to speak but instead she abruptly spins around and walks away. I felt a twinge of embarrassment that Bailey had once again come across a bit snobby, so I threw the “she’s a little shy” comment out there, which was such a lie. I’m not in the habit of dropping the “A” bomb just as I’m meeting new people. Usually that comes if we spend any significant amount of time getting to know each other. Even with all that we did manage to set up a play date, which wasn’t any more successful. It started out promising with Bailey being a lot more enthusiastic and outgoing, but her perservating on certain topics quickly turned the little girl off and she obviously became annoyed with Bailey very quickly. When we left I was not so confident that we would be invited back.
Over the weeks Bailey has come home with stories from her classmates, such as the world coming to an end in May. June has safely arrived but having to reassure her all through the months of April and May was extremely tiresome. I also found her in her bed a few nights ago terrified and crying because some little jerk (sorry, I don’t typically call children jerks, but this kid was a big jerk) told her that her stuffed animals can come to life while she’s sleeping and kill her. My child has always loved her stuffed animals more than any of her other toys and usually will carry one or two wherever she goes. So you can imagine her horror at hearing that her precious, fluff-filled friends would do her in. The effort it takes to calm her anxiety is so emotionally draining, and the little turkeys who tell her these absurd stories are really starting to tick me off. I get the impression that little girls this age typically ignore the nonsense and tell the stinky boys to ‘shut up’, but Bailey takes every word that is spoken to her to heart. She carries them around with her. They affect her entire being. The “that’s just kids being kids” business does not fly with me, especially when my little girl is left in a puddle and I’m the one cleaning up the mess.
There was also a recent birthday party that inevitably and glaringly put Bailey’s awkwardness on display. First it was all the sideways glances Bailey got from so many of the girls as if they were looking at a two-headed monkey. Then one little girl asked her why she kept making strange noises. But what really made my heart sink was when Bailey walked past two of the girls – with her noises and hand flapping – and watching them whisper and frown as they stared at Bailey walking away.
When it’s just me and her, Bailey is just Bailey… Quirky, silly, fun, sometimes moody like she’s 5 or 6 years older than she actually is. I love to hear the crazy made up songs she sings, filled with nonsensical words. I don’t mind the pacing because I know it’s calming for her. I don’t mind the crashing noises or contorted facial expressions. I’ve come to just expect those little things as part of the day. But seeing her in a group of her peers, Asperger’s screams at me. Out of control, noisy, different, loud, odd, fixated, annoying, emotionally immature like she’s 3 or 4 years younger than she actually is.
I worry so much about her making friends. I worry that all the moving we’ve done so early in her life has prevented her from even having the desire to make friends. I worry about her being made fun of, being bullied, pressured into doing things a more socially savvy child wouldn’t be suckered into doing. I also worry about her turning potential friends off by coming across cold, loud, and annoying. I worry about kids who don’t take the time to look past all the quirks and strange echolalia to get to know that bubbly, energetic, imaginative and adventurous little girl that I know.
But in the midst of all the disappointing encounters that squash my hopes of solid friendships for her, sometimes little things happen that make me feel lighter than air and replenish that hope.
One of the first few days I went into the school office to pick Bailey up, I noticed a little boy walk in with Bailey and Miss T, the Special Education teacher. Adam was in a pretty rotten mood and obviously annoyed by anything and everything. Over the next few days seeing him come in every afternoon, I got the distinct impression that he was a bit more profoundly affected by ASD than Bailey.
Over time I noticed him coming out of his shell a bit, making a point to say goodbye to Bailey as we would leave, and eventually he even started saying goodbye to me too. One day after she told him she would see him the following day, he enthusiastically sat up straight and said “Bye Bailey, I love you!” Miss. T and I looked at each other with eyes as wide as saucers. Miss T said, “wow things move pretty fast in the second grade!” and I laughed so hard. It was incredibly sweet and innocent, and it made me happy to know that my Bailey, as difficult as she can be sometimes, has managed to get through the wall that Adam built for himself.
Weeks later when I was in the office to pick Bailey up, she and Adam were deep in conversation as Miss T and I talked about their day. She began telling me that she was amazed at how they are with each other. That Adam has never responded to anyone like he has with Bailey. She told me of how patient Bailey is with him when no other child in the school has been, and how he holds appropriate conversations with her when he usually struggles with them.
As I stood there watching them hug each other goodbye, it hit me. I’ve been so concerned with neurotypical kids accepting and understanding Bailey, and her not driving them away with her quirkiness, that I didn’t stop to realize what an awesome friend SHE can be to someone even further down the spectrum. Someone who looks straight through her quirkiness to see her, just like she looks through his quirkiness to see him. Bailey is capable of being the one that offers comfort to the child who is high-strung and gets hysterical over discomfort (when she herself is not in the middle of hysterics, that is). Bailey is the one that says “cool!” to the child who comes up with the oddest name for a friendship group. Bailey is the one who has patience with the child who refuses to stop talking about chicken patties. Her responses may not be appropriate or on topic, and may even include ToonTown references, but she is still showing great patience.
Now when I see Adam, he is relaxed and cheerful. It’s the best feeling in the world knowing that my girl played a part in that. All the things I have desperately wanted for her to receive, she already has in her heart to give to others. I just need to focus on helping her pull those things out more, instead of focusing on what others give her. I can’t make her peers magically accept all the little things about her that may turn them off. I would rather put my energy into making sure she’s equipped with all the ingredients to make the best chicken patty on the planet, so she is that special friend to someone who needs her the most.
I have been struggling for a while now with the absolute ache in my soul to have another baby. Every fiber of my being longs to have one of my own to hold in my arms. It’s more painful that I can explain to hear even an utterance about a cousin of mine, who is expecting her third child. I want so badly to feel joy for her, to join in with the others who express sheer delight that, after generations of boys in her husband’s family, there is finally a girl on the way. But all I feel is envy. We are the same age and grew up very close, and all I could muster was a puny “Congratulations!” on her Facebook page. I have two other cousins who each have babies under a year old. My brother has four children and my sister has three. When I’m out and about and I see a pregnant woman or a mother with 2 or 3 children in tow, I literally have to take a deep breath and look away, like seeing them will burn my eyes. In actuality, it burns my heart.
My desire is not purely selfish. As much as I would once again cherish smelling that new baby smell or running my fingertip over a soft, plump cheek or staring at him or her for an eternity, I want more than anything for my daughter to have a sibling. When the inevitable question comes from every new person she meets, “do you have any brothers or sisters?” I don’t want her to have to answer no, because I know it makes her sad. I can see the disappointment in her eyes. Like since there are families all around us with multiple children, it’s one more thing that makes her feel different from her peers. Even with all the fighting she knows comes along with having a sibling, she wants so badly to have that live-in playmate. Someone she can run to when mama and daddy are being unfair. Someone she can tell secrets to and have imaginary adventures with. Not to mention the benefit of having that constant exposure to another child that could possibly help her develop the social skills she desperately lacks. There have been times when she’s begged me for a little sister. Heck, she would probably even love to have a little brother at this point.
Also, I don’t want her to have the sole burden of taking care of her dad and me when we get older. I’m not sure it’s something she’ll even be able to handle. That is something else that I can’t think about right now though. That is a “tomorrow” worry.
The plan was to have 2 kids four years apart. Well, there were many stressors in our household from the time Bailey was a baby that kept having another baby at the bottom of the to do list. When Bailey was 4 we uprooted and moved to Boston. A year later, off to Ohio. A year and a half after that, Virginia. Nine months gone and here we are in Pennsylvania. Somehow in the middle of all that uprooting, financial struggles, Bailey’s diagnosis, school stress, work stress, social struggles, and being tossed around in the autism ball pit, there just hasn’t been a “good time”. Whenever I bring it up now, I’m shot down before I even get the “b” out.
I try to remind myself that Bailey isn’t a typical child and requires a great deal more of my time. Would it be fair to bring another baby into the mix? Would I completely lose my marbles, as I have so few left as it is? There is also the possibility of having another child on the spectrum, as apparently studies have shown there is a greater likelihood of siblings having an Autism Spectrum Disorder.
Maybe God’s plan for me is to just have this one child. Maybe He knows that she needs more attention and more focus to be on her. Maybe He knows better than I do that I have a very difficult time focusing on more than one thing (just like Bailey) and another child would take away from the extra care that Bailey needs. Maybe He placed all those annoying obstacles in my way throughout these recent years because he knew that if I had it my way, I would have bitten off more than I could chew… and the one to suffer would have been my daughter.
Those realizations don’t make it any easier though, and it doesn’t make it hurt any less. But when it starts to hurt I can always go to that super silly, gangly 8-year-old bundle of energy and wrap my arms around her. And when she wraps her arms and legs around me in return and nonchalantly tells me she loves me… the hurt stops and I feel like I have everything I need in one sweet package.
And I’ll do whatever I can to make sure she knows it.
Today I have major brain drain. Bailey has done nothing since opening her eyes this morning except talk about the Toontown website, humming the theme music, and repeating chat phrases. I have tried in vain to divert the conversation to a different subject, but it is useless. She always returns to telling me about Lollipop (one of her toons) recently buying a new emotion: furious, and that “OMG” it cost her 500 jelly beans; and how the reward for her current “toon task” is being a tiny toon for a day; and let’s not forget the constant repeating “eepy eep eepy” which is the gibberish that pops up in place of an unapproved word, like “poop” which unfortunately is a word Bailey likes to use. She even mimics her toon’s emotions. For example, when she clicks on “angry” Lollipop will crouch down, clinch her fists, and grit her teeth. When Bailey is angry, she will do the same thing. When Lollipop is successful at a game and wins lots of jellybeans, she does a happy dance that involves tapping her feet and doing the 80s “arm wave dance”. Bailey will also do the same dance when she feels happy. It is a little hard not to laugh, even at the angry one.
I don’t know why it’s bothering me so much today. This is how it’s been going for weeks and, except for a sort break from it when she discovered Eden on the iPad, it went on for months and months after she first became a member of Toontown. I guess I’m just becoming increasingly more frustrated at the fact that I can’t hold a conversation with my 8-year-old daughter. When she wakes up in the morning and I ask her if she had any sweet dreams she tells me how she dreamed that a COG (Toontown bad guy) was in her toon’s estate, which apparently is something that cannot happen in “real life”. Or that when I’m reading her a bedtime story she will interrupt me mid-sentence to tell me about how she saved a building in Toontown that had been taken over by COGs and her toon’s picture was now hanging in the building. Or when I pick her up from school and ask her what she did in art class that day, she will respond “oh, I painted a bird. I wonder if the blue shirt I ordered from the cattlelog for Lollipop has arrived” or “I am completely out of gags so I need to go for a ride on the trolley so I can get more to defeat the COGs… can I get on Toontown when I get home?”
I don’t know whether to be sad that her fixation has taken over so much of her life. Or that I should just be thankful that she is engaged in something. There are so many children with Autism Spectrum Disorders who are much lower functioning than she is and their parents struggle for ANY type of communication or display of interest.
I also wonder how much I should encourage or discourage this fixation. We have the rule of 1 hour of computer time on school days and 2 hours on the weekend, and that is pretty much set in stone. But the remaining 22-23 hours in the day she is still so focused on it that any free time she has she spends it doing what she was doing this morning: pacing and spinning around the living room, humming the Toontown theme song and whispering something about setting banana gram traps. I take her to town with me to run some errands, but she talks about Toontown the whole time, telling me what she is going to do the next time she logs on. I take her to the playground, and she bombards potential friends with questions of whether or not they play on Toontown.
All this also makes me wonder if I’ll ever get to experience the heart-to-heart, mother/daughter talks that are supposed to be included in this package. But I have to push that thought far back in my mind. There are things about tomorrow that I must worry over before I can jump that far ahead.
Eight more weeks of school and I’m already thinking how in the world am I going to be able to fill up the summer days so she is kept busy with something other than Toontown… so she is more engaged in the real world. And so I don’t become a looney toon.
This morning I stood in the doorway and cautiously watched Bailey put on the new shirt she picked out of her closet. I listened to her speak, then repeat to herself everything in a whisper. This is something she does constantly, like “rinse and repeat” when you’re shampooing, only with words. I’ve come to expect it. I’ve also come to expect what happened next. She got one arm in a sleeve and a scowl appeared across her face.
“It’s uncomfortable,” she said.
“Just put the other arm in and let’s take a look.” I said, although I don’t know why. I knew how this would end. The sweater and I were going to lose this battle.
She put the other arm in and stood up. It was a beautiful sweater on her. It had the layered look; white long-sleeved shirt underneath with a short-sleeved sweater over it with grays, red, pinks and whites. It had little pockets at the bottom and a drawstring belt with little puffy balls at the ends.
But I knew how it would end. I knew how it would end the minute I bought it. Sweater material. Seams on the upper arm and upper chest. A drawstring belt. But it was my last ditched effort to think outside of the wardrobe box. I didn’t even have enough faith in this sweater to discard the tags. They were placed knowingly on my dresser after I cut them off. There have always been the outfits in the past that I purchased for her, thinking how adorable they were, but they hung in the closet for the entire season until they moved on to Bailey’s older but smaller cousin or Goodwill because she refused to wear them.
There have been such battles over clothes in the past. Over shoes too. The few times I stood my ground, swearing that I would not allow the adorable outfit or shoes go to waste, I’ve ended up getting a call from the school that a shoe was thrown across the room and Bailey was walking around barefoot, or that she was undressing in front of everyone. Clothes shouldn’t be this hard though. I myself have always been drawn to comfort over style. Don’t get me wrong, I still like to look cute but I’m not going to walk around in 3 inch hills, a tight skirt or some crazy, asymmetrical blouse just because someone says it looks good. So I have come to terms that only yoga pants, leggings and basic, blingless shirts will have a place in her closet. I have come to know what to expect and what to plan for.
I have proudly dubbed myself Bailey’s Pre-Planning and Expectation Specialist. I know as grumpy as heading to school makes her, there is a spot in the road leading to her school that gives her a “tummy tickle”. So I will speed up and we will sail over it, leaving our hearts in the air, just so I can hear that giggly exclamation, “Whoa!” and look in the rearview mirror to see those eyes wide as melons. I have come to expect extra time added to any trip out and about during the cold months where there is a jacket involved because the jacket will come off when she gets in the car and she needs a few minutes to get it back on before we exit the car. I know that if the seat belt is twisted in any way she will struggle back there as if trying to escape a snake’s coil. Being in a rush is futile when she is with me because she will move all the slower if she senses it. A hiccup will inevitably surface and a meltdown will follow if I try to get her to push through it.
As I mentioned earlier, each sentence she speaks she will immediately repeat in a whisper. I listen and wait for it before I respond.
I’ve come to expect that even with the charts posted in her room listing every step she needs to take in the morning, her executive functioning skills are just not there and I will still have to remind her to move the toothbrush around and to make sure she’s not putting her underwear on backwards.
I know that even though one of the things I love most about my husband is his ability to pull me out of the foulest of moods with laughter, his attempts to do the same to Bailey will only result in her screaming bloody murder. When the first utterance of a tease towards her comes out of his mouth I tense up and squeeze my eyes shut knowing what will follow.
I know to expect at least three meltdowns that involve flailing arms and grunting and kicking and screaming during a playdate because even after going over all the rules and all the expectations and all the strategies to handle frustration, there will still be occasions like her stuffed cat getting accidentally locked in a room or misplaced in a very large house, and all the strategies we reviewed were forgotten before we walked through the front door.
I know to expect that on rainy days, if we go anywhere there is hard flooring, she will become very agitated because of the sound of her wet shoes squeaking as she walks.
I expect that when music is playing her body will be moving.
I also know that the meer mention of homework will result in the grunting and breath-holding and the tensing up. I know that humming will follow if I’m saying something she doesn’t like or if I’m boring her. I also know that she hums when she is happy, or when she is concentrating.
I have come to expect that when she is excited she will tightly wring her hands together and tense up her jaw. I expect hand flapping when she’s anxious and pacing around furniture when she is thinking.
I know when she is expected to do anything in unison with a group, for example a performance with her class, that I can absolutely forget her doing what everyone else is doing. She will face the wrong way, she will do the wrong movements, she will invade her neighbor’s personal space as he or she tries to perform, and she will walk away from the group when she is supposed to stand close to them. She marches to the beat of her own drum. Always has. Always will. But I just keep the camcorder rolling. Because that is Bailey. And I don’t want to miss a moment of her.
I have come to expect that I need to adjust my expectations so I’m not trying to force her into the mold of who I think she should be. Of course I want her to learn that she has the same rules to follow as everyone else. But I also have learned to appreciate her quirks as part of who she is and not her way of aggravating her mother. She may never be the child who works tirelessly on a school project on the weekends or jumps at the chance to get her homework knocked out. But she is going to beg me to play with her and snuggle with her. Who could complain about that? She’s not going to be the kid who is always shy and quiet. But leaders never are. She may never jump at the chance to play with kids her age. But she and her four-legged best friend will always have a bond that no one can break. She may never be the person who turns the other cheek when she is wronged. But she will stand up for herself.
She is who she is. She is who God made her to be. He has a purpose for every one of her little quirks. And I look forward to her discovering each one.
Now I must go hunt down a Kohl’s receipt so I can return a certain sweater.
I finally got to go home to Georgia for Thanksgiving after missing the last three years of the absolute best cooking in the universe. And I could not have asked for a better time for Bailey. No anxiety, no meltdowns, and even very little stimming. She even managed to do an ornament craft with no flipping out over mistakes. I advised my sister to “monitor the situation closely” because all hell usually breaks out if a dab of glitter lands on the wrong spot. And it’s not just her throwing her own craft supplies across the room when things go wrong, but anyone else within reach would have fallen victim to the destruction as well. But it all went swimmingly and she even made more than one ornament.
The only little wrinkle I even remember was her getting very irritated at the seatbelt in my sister’s car and squirming around like worm in the blistering sun trying to escape it. Then when she was reciting and talking to herself my nephew’s friend asked why she’s crazy. That didn’t go over well with her so she snapped at him and growled and grimaced like she was about to attack. She managed to keep herself under control though.
She still had a little difficulty with boundaries (walking in on relatives getting dressed and showering, and minding what she said to others) but hey, it was small potatoes compared to the usual hiccups. Volume control is always an issue so I don’t even consider it when measuring success anymore… I’ve just come to accept it. All in all it was an amazingly peaceful trip. Even during the 12+ hour car ride (one way) she was an angel. For someone who has perma-ants-in-the-pants to sit still for that long with NO complaints is a miracle. Heck, for a typical child that is amazing. The key is to let her take what she wants to take, even the most ridiculous thing, and keep it within arms reach. If she has the things she loves close by, she is good to go.
This amazingly peaceful trip was in stark contrast to few evenings before. She was an absolute bundle of anxiety. First while I was making dinner she came downstairs in hysterics. When I finally made out what she was saying I realized she was upset over my eye appointment the week before where the tech put an anesthetic drop on my eyes for a test. Bailey was an utter mess, saying she couldn’t get that out of her mind no matter what she tried. I told her it didn’t hurt me and now my eyes are all better in hopes that would make her feel better. Then she did a complete 180 on me and yelled that she was worried about her teeth (we are in the process of fixing a cross bite with an expander). Apparently schoolmates commented on her gap and large front teeth. After talking to her about how God made her and he doesn’t make mistakes and how He makes everyone look different, the same old stuff that I always say when she gets down on feeling/looking different, she did another complete 180 and proclaimed through her tears that I need to take her to the doctor because her neck always itches and she has to constantly keep her hand on it. I just sat there and held her. I didn’t know what else to say or do. Her mind was obviously working faster at coming up with problems than mine was coming up with solutions.
Then all of the sudden she was calm and sat down to eat her dinner.
After dinner she was like a different child, but on the wacky happy portion of the emotional rollercoaster. She was verbally stimming like crazy, repeating “a bird in the hand is worth two in the bush” over and over. And over. And over. Laughing hysterically and rolling all over the place. I was so frazzled by the time I got to bed that I kept seeing Goldie Hawn in Overboard saying “buh buh buh buh buh buh buh buh buh”. I was sure Easton would find me the next day in a corner just like that.
Maybe she was getting it all out of her system before our trip. Looking back, as tough as that night was I’m thankful. Because if it truly was the backwards storm before the calm it made for a wonderful Thanksgiving. Not just thankful that I could enjoy my family without meltdowns and without having to constantly “monitor situations”, but that she also enjoyed being with the people she loves without the anxiety she feels on a daily basis. She felt calm enough to not constantly pace and flap her hands and hum. She didn’t feel the need to recite movies all day. She was just happy. A happy kid having fun with her family. Simple as that.
Conversation has been a challenge for Bailey as long as I can remember. The kind of back-and-forth, really-getting-to-know-one-another conversation that mothers look forward to having with their daughters seems unreachable to me. Any question I ask about her day is met with answers to what Tulip, her pretend friend, did that day. It sort of goes like this…
Me: “Hey sweetie! How was your day? Did you get to play any instruments in music class today?”
Bailey’s very animated response: “Guess what!?”
Me, hopeful: “What?!”
Bailey, still animated: “You will never believe what happened to Tulip today.”
My heart sinks, but I still manage a pretty enthusiastic “what?”
Bailey: “She was in the cafeteria eating her lunch when someone accidentally spilled milk all over her head. She was so upset she cried.”
Everyday I hear these long elaborate tales of what Tulip did, but nothing that tells me what and how my daughter did the 6 1/2 hours she was away from me. Although I sometimes wonder if these fantasy tales offer a hint as to how she experienced the day. I can’t imagine though… some of the stuff Tulip gets herself into are just so out there. Not too long ago she suffered a broken face.
So when a moment strikes I search my brain for some topic, any topic, to engage her with. Even if it starts off promising it usually ends up with me losing her not too far into it. The other day she took me off guard by asking me how my day was, but then interrupted me as she began repeating the phrase in monotone “Step back. Doors are closing. When boarding move to the center of the car. Step back. Doors are closing. When boarding move to the center of the car.” A phrase she likes to recite often after hearing it on the Metro.
If Bailey isn’t talking about Tulip’s mischief, she’s talking about Toontown, her favorite website. She talks about it at breakfast, while I’m helping her get ready for school, she interrupts her bedtime story to tell me about it… During our weekly movie night she will turn to me 10 minutes into the movie and tell me that Lollipop (one of her toons) ordered glasses from the Cattlelog and she wonders if they’ve arrived yet. Laying next to her as she was drifting off to sleep one night I heard her whispering to herself… “got to get on the Toontown trolley…toontown training video… 11, 12, 13, 14, 15, 16…. six more to go. Gag, gag, gag, gag, gag, gag, gag. Lollipop, lollipop.” It exhausted me just listening to it, thinking about all that swirling around in her head.
But oh last night! Last night we had such an awesome talk that I’m still walking on air. It started with her asking me how I knew her daddy was “the one”. This is an unprecedented question for her to even think about asking. She never voluntarily bothers with anything that doesn’t have to do with her world. I took a deep breath and dragged out that conversation as long as I possibly could, which was probably a good 10 minutes. She was genuinely interested and engaged in what I was saying and she actually asked questions and waited for responses. And then asked MORE questions. I enjoyed every second of it, making sure I was silly enough to keep her attention but also making sure I explained how important it is to let God lead us. It was such an awesome few minutes, and then…
Bailey: “Nevermind! I have an idea!”
Me: “What’s your idea?”
Bailey: “Nevermind! I have an idea! Nevermind! I have an idea!”
It hits me that she is reciting Spongebob. But I don’t care because it was absolutely, fantastically wonderful while it lasted. I can’t wait for the next time we talk.