MONDAY 11:55pm I’m officially five minutes ahead of schedule, folks. I have a sleeping four-year-old on my elbow, a snoring teenager making my eye twitch, but I’m ahead of schedule and I’m gloating, here and now **confetti throw**
In fact, this is the first time I have been ahead of schedule for the last few months. I recently took a new job as a Program Manager at a non-profit activity center for adults with additional needs. Last week, I would just stare at my phone in disbelief and set it down, like I was a time traveler from 1985 – I just couldn’t deal with the loud rectangle. It’s a slow process, but I’m getting into a groove.
I don’t want to play my hand too fast, but I LOVE my job. I have not only gained friends, but I have gained perspective, dance moves, checker skills, and personal, long-term mama goals. I hang out with an amazing group of adults – and it’s such a cliche – but while yes, I teach them, they also teach me.
Speaking of adults, let’s talk big picture plans – do you have a plan or are you an ostrich with your head in the sand? If you are an ostrich, it’s okay to admit it here and now, but you should game plan to morph into, say, a rhino, pretty quickly. Are you charging towards your kiddo’s future? If not, why? Are you planning work skills? Money management? Independent living skills?
Listen, even if you are at the beginning of your journey and this feels IMPOSSIBLE, you need to PLAN to make your “impossible”, possible. It is easy to get caught in the cutesy-putesy childhood section of a diagnosis, but I’m gonna shock you with a little known (see: ostrich) fact – Childhood is 18-21yrs long. Adulthood is much, MUCH longer. In an “ideal” scenario, it continues long after you are alive.
Breathe folks, I am telling you this as a parent of a 14 year old that has been diagnosed for 10 years. I could not comprehend what I am personally saying even five years ago, it’s okay if you are not here yet…..just know you need to get here.
If you have started thinking of the post 18-21yr continuum, what skills are you working on? What are you including on your child’s IEP? What social skills and goals are you working on? Please sound off below or share on the FACEBOOK page – we learn from one another – let’s collaborate!
It’s been a whirlwind few weeks, and the winds are still whirling, but I wanted to be sure I caught this Tuesday to get back in the groove of things.
Between holidays, a new semester, my advocacy class, and Aiden’s birthday creeping up, I have been thinking a lot about his journey and how we have shaped him for adulthood. I wrote this piece for another venue, but I’ve decided to share it here. Happy New year!
When children show a knack or interest in a particular activity, parents tend to go above and beyond to help them thrive. If a child takes a liking to a soccer ball they get on Christmas, they are enrolled and on a team by spring. Say they have a penchant for drawing. Art classes abound! So why do we, as parents, hesitate to embrace the other things our kids with autism love: vacuums, desk lamps, and tape, oh my! Your child’s passion is their strength. Use this as a map to help create meaningful short and long term goals. When we threw my son a birthday party at his favorite laundromat, we were sure our typical friends would shut us down. On the contrary, I have never seen such an inclusive community snapshot than being in the midst of washing machines and friends of all abilities. Laundry-related words have helped us kick start speech, challenging behavior, and sets our sights on a long-term goal my son has had for years: Washing Machine Fixing Guy. Recently, I was at our Capitol talking with a Senator who met with my son’s class earlier in the year to celebrate Autism Awareness Day. She told him she had a friend with an appliance repair shop and that he may be able to shadow a few days for some on-the-job training. We took his “silly obsession” as a toddler and have embraced it to the point that at nearly 14, he has an opportunity I would have never thought possible 10 years ago at diagnosis.
If your child uses a reward board or a token system, try using pictures of vacuums as you make your way to the desired reward. If you have an anxious child who enjoys the soothing glow of a desk lamp, write in a desk lamp for their desk during your next IEP meeting. A tape loving teen would be a valuable aide to the teacher always hanging up new things in their class. Heck, a LOT of clubs hang things up and down their school’s hallways! Find a club leader and explain the passion. Sure, some people will say no because let’s face it, we don’t live in an inclusive utopia. But Parents…some of them WI LL say YES. That’s how you create change. Every child deserves to be a thriving member of their community. One of the greatest barriers to an inclusivity is awareness. As parents, we want the world to embrace our child, but we need to remember that includes all of our child’s gifts, even the “quirky” ones. Start small and think big: you never know where you and your child’s puzzle-pieced road will go next.
I recently went to my first college football game as part of a writing assignment. We don’t watch a lot of sports in our house, so the first thing I had to do was convince my little guys that this was going to be super fun. When I enthusiastically told them about our plans, they both looked at me with blank faces. Lief simply said, “Nah, that’s okay. I will stay with Dad.” August just wore the same face I would wear sitting through a quantum physics class: pure confusion at the most basic level. Footwhat? It was obvious I was going to need help when I proudly declared that the seats were by “the front of the goal line or something” so I invited my mother-in-law as a “cultural translator” so to speak.
I can’t give away spoilers for the other piece I’m writing, but I can tell you about Lief’s take on the evening. First, we convinced him to go with the promise that it’s the one place that encourages you to be LOUD. For a child who needs a constant reminder about using his inside voice, he was sold. What we failed to point out to our brilliant and quite literal thinker was that it didn’t mean that you walked into the stadium and basically battle-cry nonstop until you leave.
The moment we sat down, the shouting started “OH YEAH BAY-BEH! OH YEAH BASKETBALL!!!! I MEAN FOOTBALL!!!!! GOOOOOOOOO! WHOOOOOOOOOOOO!” We had 40 minutes before the game started. The team was stretching and a few people were meandering around the field.
I tried explaining the art of the shout, but it was too late. “You said this was a place I can be loud and I am being loud” he protested. Fair point. My mother in law pointed out that if he screamed the entire time, he would lose his voice. Logic is the way of the Lief and it helped for about 10 rock solid minutes.
By the time the game actually started, Lief had cheered for stretching, a mascot, a man in a banana suit, a few commercials on the big screen, the national anthem (during and after), the flags, a baton twirler, both bands, a picture of the Ghostbusters logo, the cameras, both teams, and a handful of other things I’m sure I am missing. My mother-in-law showed him when to put his pointer finger in the air and yell, “OOOOOOOOOOOOOOOO” (or something like that?) and quickly put his arm down when it absolutely *wasn’t* the time to do that. Through it all, Lief cheered and shouted and rallied. Our team was up? HORRAY TEAM! Our team was down? HORRAY OTHER TEAM! I was truly shocked he kept his voice and didn’t sound a bit raspy the following day. His vocal chords are impressive, for better and worse.
Besides walking away from the game and realizing I would absolutely do that again in a heartbeat, I also reflected on my loud-mouthed love. He is *everyone’s* greatest supporter and cheerleader, in and out of the stadium. He cheers on his brothers, his friends, and really anyone that crosses his path. When we went trick-or-treating, he complemented passerby’s costumes. He told some big boys in terrifying killer-clown masks that they did a good job scaring him. The boys just said, “uhhhhh thanks”, and Lief walked on, a kick in his step.
We constantly are reminding him to turn down his voice. Sometimes, he is so loud that I’m sure my ears will start bleeding. If I think about it though, 9 times out of 10, he is simply being happy, enthusiastic, and excited about whatever adventure he’s come up for the day.
The next time you have some tedious task to take of, channel your inner Lief. He will rally you through it all. “GO PAYING BILLS!!!’ “WHOOOO HOOOOO ROOT CANAL!!!!” “OH YEAAAAHHHHHHH BAY-BEH, CLEAN THE TOILETS”!!
EDIT: His name is TY, not JAY as originally posted.
I have been thinking today is Tuesday. It makes no sense because I thought yesterday was Wednesday. Maybe tomorrow I will think it’s Christmas, or better yet, Purple. Who knows. This week has been a heavy one. It’s easy to watch the horrors unfolding and worry about what kind of world our kids are growing up in. It’s scary. I had an active shooter dream a few nights ago and woke up, panicked. It’s the stuff of nightmares whether you’re awake or asleep.
There’s a wonderful Mr. Rogers quote that floats around when this all-too-often event takes place:
“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.”
It’s a good reminder for all of us, as parents, as humans. We have to hold on to the good when so much bad is out there. BE the good by calling your legislators, by advocating for change, by being a voice, by educating yourself and others, by voting with knowledge regarding your politicians and their stances, not just with a pencil and a shrug.
I had a surprise GoodMoment last week in 7-Eleven that I wanted to share with you guys. Aiden and I had pulled in for gas and a drink. It’s the station around the corner from our house, so we all frequent it often. That said, I’m usually there sans kids. I gas up and dash or I run in while everyone hangs in the car (don’t crucify me, doors are locked and I can see them at all times).
We walked in and I heard, “Hey there Mister Aiden, how are you today?” I turned around and didn’t see anyone but the cashier. “Do you know someone in here?” I asked A. He shrugged and got himself a drink. We approached to pay and Ty**, the cashier, looked at Aiden, “are you having a good day?” Aiden smiled and nodded.
This isn’t the first time that people have come up to strike a conversation with Aiden. Sometimes, I don’t think people realize that he will not give me context so I *really* appreciate disclaimers. I find out they have subbed in his class or helped him at an event, etc etc. Just adults being warm and friendly, which I appreciate and love. That said, I’ve done it a dozen or so times as well in my previous teacher life so I get it.
“How do you know Aiden?” I asked. Ty grinned and said, “He comes in here with Mr. Steffen quite a bit. We make it a point to know all of our extra awesome customers in case friends wander or they come in alone, distressed, things like that.” Then he looked at Aiden, “and Aiden, YOU are extra awesome, man!” Aiden smiled.
You guys, I stood there dumbfounded. I’m a cryer. I cry at EVERYTHING. There’s still a commercial I saw when Phoenix was a baby in 1999 that makes me tear up if I think about it. I cry when I’m sad, frustrated, mad. I cry when I’m laughing hysterically. I cry a LOT. So being this moved by a random act of selfless thoughtfulness….well, it’s a miracle that I didn’t breakdown at the counter and held it together until I got to the car.
And let me rewind the message and break it down a bit more. Not only is he saying such a reassuring, kind, statement, what he’s NOT saying is extra important, too.
He isn’t talking to me like Aiden isn’t there. (It happens)
He isn’t talking down to Aiden. (It happens A LOT)
He has worded this to respect Aiden (“extra awesome customers”). I don’t know this man from Adam. He isn’t in special ed, and he isn’t a cop/firefighter who has been trained to “be on the lookout”. He’s a cashier at 7-Eleven being one of the good guys. Being one of the helpers.
I’m not going to lie, I haven’t thought much about 7-11 as a corporation, but I started looking into them and saw that they are very big proponents of social responsibility. I encourage you to take a look.
It’s true, “if you’ve seen one person with autism, you’ve seen one person with autism”, however, we are all part of the same club. We can share in victories because we KNOW how incredible it is to reach a goal, beat an expectation, defy the odds. We can all swap our own version of disappointment and outrage. For example, when Joe Citizen sees us in a random store and decides that they know how to parent our child better than we do. Afterall, “they look fine” and/or “just need some discipline” (yeah, noted. thanks. jerk.) We can ask each other anything – none of us will be phased because, yeah, we get it.
Right now I’m in the exhausted club. I could be a raccoon for Halloween for next to nothing because I’m up half the night, have dark circles under my eyes, and feel like I’m constantly handling the garbage parts of behavior. Yes, we are in the thick of a behavior backslide. Smiley Ditty Bear has become Grouchpants Cussface. Now that he is a teenager, this can become a bit more complicated: his loud is louder, his refusal to cooperate is less let-me-just-pick-you-up-and-get-you-to-a-safe-space because #manweight, and his anxiety and sensory chaos comes out way more scary to a passerby (sometimes, even to us).
The tricky part is that so far we have not been able to sort out any rhyme or reason.
We have looked at it from a medical and behavioral point of view, but nothing screams “Ah-HA!”. Honestly, at this point, if you knocked on my door and said, “Just have him stand on his head and put mustard on his feet” I would do it. It would be loud, confusing, and difficult, but I’d do it.
Even though this straight up sucks, the suckiest suck part (cmon, I’m tired. Just lemme write lazy, tonight) is that HE hates it. In the middle of full-on hysterical sobbing, he has cried, “I hate this!” Last night, after something set him off, he was blood-curdling screaming in his room and said, “I HAVE ANXIETY!!”
I’m admittedly not always cool in these high-pressure moments, but last night, I stayed very calm and neutral (yelling, arguing, reasoning, explaining – it doesn’t work when our kids are in Meltdown Mode.) “Hey, do you have words right now? Will you try to sign ‘yes’ or ‘no’?” Sobbing, he signed “no”. “Okay. I’m going to sit in the hallway.” I gave him a few minutes and poked my head in. “Do you want to hear me talk?” (who doesn’t!!) He signed “yes”. This was my tiny window.
“Can you touch your nose?” sooooooooob touch
“Will you clap your hands?” “sooooob clap
“Now, stand up and reach way up high” *sniff* reach
“Let’s count to five” verbal response
annnnnnnnnd he’s back.
This is, really, the best case scenario. There have been meltdowns that I have vacuumed through just so that I could make sure the house was extra clean for when DHS undoubtedly showed up to investigate the child murder screams that periodically slip past the walls. They haven’t shown up yet, and I truly thank my neighbors, grandparents of a teen with autism on one side, and a retired special ed teacher on the other, for that.
To be clear, this isn’t constant. These unpredictable emotion bubbles are just popping up much, much faster than before. I’m up for suggestions, so let’s hear them.
Last Thursday, I posted a picture to Real Life Autism’s Facebook page showing the cost of a new prescription that Aiden was given by his immunologist earlier that day.
(Ill share it here, but you really should “like” the FB Page so that you stay in the loop for things like this, advice posts, funny stuff, etc):
This is the cost after insurance. The pharmacist suggested I take it down the road to another place as our current Rx Hub doesn’t take Aiden’s new secondary insurance. I did just that and I am still waiting to hear the new cost. Apparently, they can’t tell me what it will be until they fill it. In order to fill it, they had to order this magic-potion-script that better clean my house and do my grocery shopping for that price.
Years back, we had to pass on a medicine that was suggested for Aiden by his neurologist. It was a non-stimulant that she thought would help him with some challenging behaviors. Since there wasn’t a generic yet, we would have to pay for the real deal. That would’ve been fine except it was running around $300/month. In other words, impossible for us. Instead, we went with Risperdal, a medicine that would up in a class action lawsuit. Luckily, Aiden did not have any of the issues than many boys did due to the medicine, but it was clear: Money dictated help. This isn’t a new fact, but I often wonder if those that don’t have direct ties to people with additional needs realize just how much this can impact our loved ones.
I have mentioned Aiden has PANDAS, but I have not gone into too much detail here. Mainly because I am still learning about it myself. There are some medical professionals that don’t even agree that this is a proper dx so I will concrete the issue by saying he has also/concurrently(?) (again, still learning!) been diagnosed with Hypogammaglobulinemia. This makes him susceptible to illness more than others. A proven method to helping people with PANDAS and Hypogamm(etc) is IVIG. The problem with all of this is that insurance is reluctant to approve treatment for a controversial diagnosis like PANDAS. It took us two immunologists and about a year and a half to get approved for IVIG and that is the quickest of anyone I know. Many people end up paying out of pocket to the tune of $10,000+ (Check out this parent forum with ACTUAL OOP costs from 2013).
Last year, Oklahoma was the 44th state to pass “meaningful autism insurance coverage”.HB2962 will allow citizens to “gain access to basic, evidence-based care for their family members with autism”. There is more to the bill than Applied Behavioral Analysis, but it finally allowed BCBAs to bill insurance for ABA Therapy in this state. Before that, there were only a handful of people that could access this service by way of their insurance (TriCare, for example). Many actually uprooted their families and moved out of state in order to afford services. The rest of us would have to pay out of pocket for these services for our kids if we wanted access to this therapy. This could add up to thousands upon thousands in a single year. I ended up working in an early intervention pilot program that utilized ABA Therapy with astounding results for the children enroll in the program. However, my son was too old to attend, insurance wouldn’t cover him, and so I learned everything I could and would sit at home trying my best to work with him (Mama as a ABA Tutor is TOUGH). Now, even with meaningful reform, self-funded insurance policies do not have to provide the coverage. Guess what we have? Yep.
There’s another money pit: careers. Many parent’s must have one parent home or employ an absurdly dependable person for their child. I have worked a career around Aiden. There was some time that I was single parenting it. Aiden was 3 and could not speak very well at all. I could not, in good faith, put him in daycare. One, he’d constantly be sick and two, he could’t speak up for himself.
I had a full time job that mostly accommodated his needs, but eventually I chose to move into a (more expensive) town with a school district better suited for kids on the spectrum (and closer to therapies). However, that gave me a 30 minute commute one-way and the difficulties to single-parent balance work, therapies, school, and family in general (remember, Aiden also has an older brother!) became stacked. I took a part time job in town (see above) that understood autism, applied for Aiden’s SSI, had SNAP benefits, and his dad was sure to pay child support on time (as he agreed that daycare was a no-go). I would give myself $10/wk for ME ($20 if I was feeling Baller), but everything else went to the kids and Life. It wasn’t pretty, but I made it work.
I see this struggle for so many of us. Work full time for as long as possible until your kid falls ill or the school calls or until therapy and doctor appointments become “intrusive”….. My story isn’t the exception, it’s typically the rule. We all have to figure out how to make things work for our families and that usually means putting vacations, home improvements and a lot of the “fun stuff” on hold. Now, 10 years later, Aiden is older and I am remarried and do not need the SSI and SNAP, but a child with additional needs still takes financial punch to the gut. I can finally work with confidence that I won’t be called every single day, but autism will always come first. That’s a simple (and complicated) fact. So that cost? Annual income x 10.
This doesn’t begin to even scratch the surface of long-term care as an adult.
Real life autism is the promise I made, right? Well, here it is. This is a real life reality for many of us. I hope those of you that have experienced this issue chime in and share your story, even a piece of it. I hope those of you who are “bystanders” of autism (neighbors, friends, family, etc) are learning through these posts. I would love to hear from you as well.
If you have a question about autism, spd, adhd/add, etc, send your completely anonymous questions to RealLifeAutism.sarahah.com . If you want to chime in on the questions before the post hits, be sure to follow the facebook page here.
I have gone most of the day thinking it was Monday. That should give you an idea about how things are going over here – I talked to the neurologist today and get to see the immunologist on Thursday. Yeah, it’s THAT kind of week. At least it’s closer to Friday than I thought.
A few weeks ago, I told you guys I had started an anonymous email option to help open up the dialog regarding autism. Some people asked about sharing the option for other diagnoses as well – hey, why not? Many people with autism have multiple diagnoses.
The idea behind this is to create a dialog that may not happen face-to-face. I want you to ask the hard questions, even the ones that may be offensive. Share the email and let’s create an understanding and inclusive community through dialog. A good friend paid me the greatest compliment when she said, ” I love that you work every day to make people suck just a little less.” Perfectly worded. That’s the goal! Another friend of mine said she has a mantra that I have since fallen in love with: Communicate. Educate. Advocate. That’s gonna be a tattoo on my body at some point.
One of the first messages I received was from a parent who said, “People ask, ‘Is he like Rainman? What special skills does he have?‘” Besides cartoon smoke blowing out of your ears, how do you answer this?
“Rainman” may be the second most offensive r-word because, like many stereotypes, it’s a lazy one. I personally hate this question because, it puts me in a challenging spot. If I say, “he’s not like Rainman” does that imply my kid doesn’t have “special skills”? Just because he can’t tell you insane facts from 50 years ago or count the exact amount of toothpicks that fall on a diner floor does not mean that Aiden doesn’t have “special skills”. I believe he loves laundry and washing machines more than anyone else in the ENTIRE WORLD. #1 out of 7 billion and some change ain’t bad!
Typically when someone asks this, and they do my reply tends to depend on the amount of sleep I’ve had, the number of doctor appointments I have sat through that week, and if I’m feeling sleepy-snarky or awake-and-advocatey. I have definitely replied with Aiden’s love for laundry and his want for a washer-world. I have also told people, “his special skill is tolerating a world that is turned up at a 15 every second of every moment when all he wants is a 4 or 5…even an 8.” I try to keep things light even though I am eyerolling so hard, I can see my own butt cheeks. The question annoys me so much, but by asking it, it typically means people are at least trying. It’s a good chance to start a dialog.
I posted this on our facebook page, and a few of the responses made me laugh. One parent said, “I tell them she is a really good judge of character, and evidently doesn’t like you”. Another parent said that she says her kiddo’s “savant skills” are, “eye rolling and pulling all-nighters”.
One parent shared her sincere response, ” I’m sure some people with autism have that skill. Matthew was blessed with other skills. All children and adults have strengths and areas that require assistance. Its just a matter of learning to navigate the map you were given.”
What about you? Has someone brought up Rainman to you and yous? Does it bother you? How did you respond?