seizures and Autism: a visit to Children’s Hospital

seizures and autism - a visit to Children's Hospital
Jeremiah’s seizures began when he was a newborn. We adopted him from foster care, so he wasn’t with us then, however he had the “shaking seizures” after he was born and then again a month or two later. He came to us at three months and we didn’t see anything unusual, indicating a seizure until he was about three-years-old.

Somewhere along my trek through Autism, I heard about Autism and seizures being synonymous at times. I heard this in correlation to children with Autism losing their skills or regressing. Jeremiah has always gained skills and regressed, it’s been the story of his life. Does he say, “Hi”? He used to. He also used to…but now he…Gaining and losing, gaining and losing.

Was it seizures?

When he was three-years-old I heard this terrified cry come from his room. I quickly went and opened his door, and he looked so frightened. I’d never seen that look before. He’s nonverbal, so he couldn’t tell me if it was a nightmare, but he was acting strange, and it didn’t seem to me to be a scary dream. After that he really regressed. I was sure he’d had a seizure. 

We then had an EEG done at our local hospital, the goal was to asses whether there was any seizure activity. It wasn’t a good experience. First, Jeremiah doesn’t do well when outside of his routine, so going to the hospital was one of those “Oh no, what in the heck are we doing?” adventures. Rough. Second, they had to place all these sticky do-dads on his head (sorry don’t know the medical terminology). Yeah right. He doesn’t like anything on his body that isn’t supposed to be there; dry skin peeling off his lips, a band-aid, etc. So he yanked at those wires which hooked to the sticky do-dads with a ferocity you wouldn’t believe. Third, he didn’t understand why we were there or what they were doing to him. So, after forty-five minutes of crying, screaming, and panicked writhing (my sweet husband got quite beat up) Jeremiah passed out from exhaustion.

The techs only ran the test for another ten minutes and said that’s all they could get. Really? All they could get? Since they have twenty-four-hour and seventy-two-hour EEGs I would imagine they could’ve run the test a little longer, but they were exhausted themselves and wanted to be done. The end.

Those results came back inconclusive, meaning while he was asleep for ten whole entire minutes his brain didn’t show any seizure activity. Shocker.

Fast forward to August 24. This time we witnessed a seizure. Problem being it didn’t click that it was a seizure for quite a while. Jeremiah was playing in the back yard and his sister was, well, crying over something. Justin and I were cooking and Justin left to bring Payton inside, he noticed that Jeremiah was standing in the backyard not doing anything in particular. This happens sometimes.

Payton continued crying, we were trying to get dinner on, and Justin called for Jeremiah to come inside. Usually if we tell him to come in and eat, he will, but this time he didn’t move. Justin stuck his head out the door again and called to him, and Jeremiah didn’t move. So, Justin went out and picked Jeremiah up and brought him in. He stood him on the chair where he always stands, he was facing the back of the chair. We continued to work on dinner and Payton continued to cry.

Justin notice that Jeremiah hadn’t moved. I went over to him and touched his arms, there was a slight tremor to them, like he was holding something with a really tight grip. I said there was something wrong, he didn’t look at me (for a child who has Autism, he actually makes very good eye contact) and

I couldn’t get him to stop staring into space.

Justin picked him up, his body was rigid, and we took him to the couch and undressed him, thinking he’d been bit by something outside and was having an adverse reaction. We weren’t getting any response or looks from him, he was breathing but just wasn’t there. We turned on his favorite movie to see if he’d look at it, and he did eventually turn his head. Jeremiah then curled up in Justin lap in a fetal position and shoved his fists into his eyes.The rest of the evening he was exhausted.

It was somewhere after checking his body for any indication of a reaction that I realized he might be having a seizure. I knew he’d had them before and that correlation with Autism is there. There are also seizures known as petit mals or absence seizures where someone will stare into space and their body becomes rigid, you can’t get them out of this state until the seizure stops. Now I knew what had happened. Problem was, this lasted seven to ten minutes, much longer than a petit mal or absence seizure.
complex partial seizures & autism

Jeremiah’s doctor referred us to a Neurologist at Children’s Hospital. I was worried because we’ve had more hospital visits go awry than just the one I talked about above. HIs doctor reassured me, “It’s Children’s, they deal with this all the time.” The “this” meaning Autism. I think.

The chats with the scheduling nurses before we arrived left me strongly disagreeing with Jeremiah’s doctor. They didn’t take Autism into consideration when scheduling his EEG he was to have at Children’s – which they failed to notify me of. Whoops. When I found out, I said an hour-long EEG wouldn’t tell them anything, and we’d already been there, done that. So, got that worked out and figured we’d have to make another five-hour trip to the hospital soon after this Neurology appointment.

We arrived a little early on Friday morning. I watched as children filed in and out of Children’s with their parents. I was completely struck by thoughts that these children were sick, many of them worse than Jeremiah. Our seizures and our Autism are nothing compared to what these families are facing. Some are worried every moment that their child won’t make it, that this is all they have. For many the seizures are worse, occurring multiple times a day and the child is convulsing, while the parents are filled with fear far more often than I.

The appointment went really well. We heard exactly what we wanted. Jeremiah doesn’t need medication unless the seizures increase in frequency or longevity. We have an emergency “pin” with medication that we’re to administer if the seizure lasts longer than five-minutes. They diagnosed them as Complex Partial Seizures. The emergency “pin” relieves my anxiety a great deal. To know that I can do something if Jeremiah has a seizure, helps tremendously. It’s so much better than standing around wondering how to make it stop.

Some other great news is that for now, no EEGs need to be conducted. Yay! You can’t imagine the relief. Well, if you have an Autistic child you might be able to imagine. I don’t want to go through that again. Ever. Since they know he’s having seizures they feel it would be pointless at this time to run the test.

The coolest part was that the Nurse Practitioner understood Autism and referred to us anytime she needed to do something with Jeremiah, she even said she didn’t mind if I took the measurement of his head. (Bad idea, she didn’t know i’m horrible at math.;)) The other awesome part was that the Neurologist offered to take Jeremiah out into the hall while we chatted with a nurse and learned how to administer the medication. The doctor wasn’t young and Jeremiah is fast, but he seemed to be enjoying himself, just chillin’ with Jeremiah – or running and chasing, whichever.

To be somewhere and have the medical personnel understand Autism was so reassuring. They all knew about Sensory Processing Disorder, didn’t even ask me to put the admissions bracelet on his arm. We got some answers and although I feel our life is far more complicated than most, I was reminded that it could be worse. A lot worse.

If you’d like more information on Complex Partial Seizures, you can check out the Epilepsy Foundation.

I also found this article that talks about Autism and it’s relation to Complex Partial Seizures.

Does your child have seizures? How do you feel about them?

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what works for your Autistic child: when therapies and programs don’t fit

what works for your Autistic child
What does the Autistic child want? I wonder if this question is ever asked. Well it’s asked, but what percentage of the time? And, frankly, there are therapists and parents who never ask this question or acknowledge the child they’re working with or raising has opinions all their own.

It’s as if children who have disabilities necessitate therapy 24/7.

Often the child behind the word “Autistic” is forgotten about, and people try to therapy the Autism right out. Thought isn’t given to what the Autistic child might want to do, whereas with a typical child, their concerns, desires, dreams, and preferences are usually contemplated when deciding how that child will spend their time. Not so with the child who has Autism.

An example of this arose as my son’s school year approached. A school therapist was doing a home visit before school began, and she asked, “How has Jeremiah done this summer?” I told her he’d done really well during the last part of the summer, until his sister went back to school (that change threw everything off kilter). She responded, “I’ll be honest, I was worried about how he would do without ESY (Extended School Year – summer school). Although it’s a different schedule, having that time of consistency helps kids.”

The reason Jeremiah didn’t do ESY this past summer was because of that “different schedule” she mentioned, and as for “consistency,” there really was none. In the summer of 2012 we put him in the ESY program for the first time. Some parts of it were good, some parts weren’t.

The Bad: A haphazard, confusing schedule. Although there were many positives about ESY, we found this so negatively impacted Jeremiah and our family that we decided not to do it again. Our school district has an inability to think through the make-up of special needs students, specifically the needs for consistency and routine. I would think if a program were designed to reach children with special needs, they would build it around their inclinations, however our district didn’t.

ESY was only held two mornings a week, whereas during the school year, Jeremiah and his classmates attended school four mornings a week. The kids began their summer like everyone else and then their world was upturned, ESY began. They went for a few weeks then took a break for two weeks and went back for a couple more. Then ESY ended and they waited out the rest of the summer “like every other child.”

But wait, it wasn’t like every other child because everything they’d come to rely upon was flipped on them. Kind of like how some school districts are choosing to add new fall breaks and teacher work days here and there, except as I said, this program was created to meet the needs of children with disABILITIES, not typical children.

It was horrible, we struggled getting him into the new routine in a new place, with new teachers, and new students. Once he settled in, they waylaid Jeremiah and his fellow classmates with a break – a break in the midst of a short summer program. Don’t ask me. Then back to ESY it was, another adjustment, and then off for more summer fun. Not so much. Jeremiah was confused and irritated, it took days to get him to relax into being at home every day, and the times when he had to go back, oh wow. It wasn’t productive and there wasn’t enough positive outcome to consider doing it again.

Plus, what did Jeremiah want to do that summer? I know ESY can be beneficial for kids, I’m aware there are positives, and I don’t think two to three mornings of ESY during the weeks of summer are a bad thing. However, when we consider how Jeremiah felt during all those transitions, I can imagine he was saying he didn’t want to go. Well, more like, “Once you get me into a routine for the summer, keep me there.”

That summer what Jeremiah wanted wasn’t on the forefront of our minds, we were focused on what we were told would be best. But when ESY was over, we agreed he wouldn’t do it again.
often times the child behind the word Autism is forgottenThere are some positives to ESY.

The Good:

Different teachers. Only one of his therapists from the school year was in the ESY classroom. Exposure to different teachers is great, but who the child is must be kept in mind. Each year your child will have a different teacher (unless they’re secluded in a special needs classroom) so teachers change, but we don’t need to force it on our children more than necessary. However, if your child can handle it (given a little time and assistance), it will most likely benefit them.

Different students. Your child will always be exposed to new people, so this is an excellent setting where they can be around a more diverse group of kids. (Although, I’m a BIG proponent of inclusion, and in an ESY program you’ll only have children with special needs, no typically functioning children.)

Different school. Your child will be going places, new places, all the time, so this will help with those changes of venue. If your child’s in regular education classrooms, they’ll be switching schools; preschool to primary, primary to middle school, middle school to high school, and they may have a job at some point. In this way an ESY program could be helpful.

The dynamics found in ESY will stretch a child, but we want to make sure we’re thinking about the child. If an Autistic child is absolutely, or even minutely irritated by a summer program, why do it? It’s summer. Does a typical child get to enjoy summer break? Most do, most aren’t forced into a day camp they hate every day of summer.

Neither should an Autistic child be forced into something they hate.

Adversity makes us grow, it makes children grow, and at times it can help the Autistic child, but at what cost? If an Autistic child is truly miserable how beneficial is it going to be? And, if it’s not done right it can harm the Autistic individual.

I was recently asked by a professor at the University of Michigan to submit articles to two anthologies she’s putting together. One focuses on how certain therapies harm Autistic people. This is a real issue. Just because someone tells you to do it, that doesn’t mean it’s right. There are many therapies that are accepted as “normal” for Autistic people, and many have been harmed through its process.

We have to think about the person behind the Autism.

We have to consider what they want. We have to look at their positive qualities, not just the negative ones. There are ways to help the child who has Autism, but it may not be in the way most Autism parents or therapists consider the “best way.”

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what if my Autistic child never says, “I love you”?

what if my autistic child never says I love you_2*Please be sure to read to the end if you’re offended by the words “grieving process.”

When a child is diagnosed with Autism, often times there’s a grieving process for the parents. Their original expectations are drastically altered, sometimes in one moment, sometimes over the course of months or years. Grieving is important, if we don’t acknowledge how we feel about something deep at the core, we will never truly deal with it, and it may spring up at another inopportune time.

I’ve heard many Autism parents grieve the fact that they may never hear their child say, “I love you.” Like I said, grieving is okay, I understand it, I felt the same way, I said those words. I was saddened that I wouldn’t hear my son, Jeremiah, tell me those words every mom wants to hear. But then it changed.

My attitude changed because I’m privileged to have learned (and will forever be learning) from Autistic adults as well as other Autism parents who see the positives in Autism. I hadn’t been focused enough on those positives, I was seeing too much negative. My grieving was going too long,

I was in the “poor me” mentality.

While there’s a time and place for those feelings for some of us, it’s just that, a time and place for them. There are many moments when I’m frustrated, when I wish Jeremiah could tell me what he wants so he isn’t hitting me, banging his head against me, or trying to scratch me out of anger. I wish there wasn’t regression, I wish that if I stopped teaching and directing for one day that Jeremiah would still follow the “rules” of the house. I grieve for myself, that I don’t have down-time when I desperately want it. I grieve because no one seems to completely understand the life we live.

But life with Autism is so much richer when I see the wonderful, and there is an abundance of wonderful.

I can acknowledge those frustrations and grieve, then I need to move on and recognize what’s beautiful in him.

At some point in my journey through Autism, I heard an Autism mom say, “My child says ‘I love you,’ it’s just in his own way.” She was right! This was a profound moment for me. A moment I was looking for, yearning for, was already in front of me. Jeremiah was already telling me he loves me, I just wasn’t listening. This was my problem, not his. Can I tell you the joy I felt? The angst that was lifted from my heart?

This has happened on more than one occasion, this heavy feeling of “He will never” being lifted from me and being turned into something beautiful and special.

Yes, there are obstacles that come with having a child with special needs, but there are also so many exceptional moments, and life lessons we learn that no one else gets to. When Jeremiah (age five) does something he’s never done before, something that an infant or toddler might do, it’s euphoria. I experience moments no typical parent witnesses. When Jeremiah laughs at something someone said, it’s pure joy. When he communicates by leading me by the hand or using my hand to point to something he wants, I’m elated.

See, Jeremiah does communicate, it happens to be in a different way than a typical child. He tells me he loves me every day when he “asks” me to do something for him, when he smiles at me, when he laughs at the silly nickname I’ve given him, or when he sits in my lap. In all of these moments and so much more, he’s telling me he loves me.
I love you can be spoken in every language

Not all of you have a child who will hug you, or look you in the eyes and smile, or respond with a grin when you say his nickname, but I hope you can find the ways your child tells you he loves you.

An Autistic adult made a list of things typical people should just assume about the Autistic individual. I’ve tried in vain to go back and find who wrote it, but can’t, however, I do know it was written on an Autism Facebook page that supports positive thinking in regards to the disABILITY. On the list, she wrote that we should assume that the person who has Autism loves us if we love them and show them we care and love them.

How does your child say “I love you”?

Please feel free to share this article if you know someone who would benefit.

*A note about my terminology. Autistic vs. Has Autism – In the adult Autistic community I’ve heard it said countless times that they prefer to be called Autistic. The parents of Autistic children say “use person first language.” I respect the Autistic adults opinion, as they are the ones living with what my son has. I also understand where the Autism parents are coming from, I felt the same way. I used to only us the phrase, “My son has Autism,” but I know use both references interchangeably. I don’t feel there’s a right way or wrong way.

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Autism Birthdays

Jeremiah turned five today. So, here’s the birthday deal. Jeremiah doesn’t like many foods (like, um, two at the moment) and doesn’t like cake, but this year I wanted cake. (I apologize to my sweet boy for the piddly cupcake, it’s your Dads fault.)

I get tired of not being able to celebrate my sons birthday like every other child. No party, except family, because it would wig him out and he’d hate it, not a big to-do because he wouldn’t notice. So, I at least wanted the cake. I did the cake. He smelled the cake, because, well, that’s what he does. He smells most things he comes in contact with. It’s cute…for now…at age five.

He smelled that cupcake, and actually licked it which was quite a celebration, he then got down from his chair, went to the fridge, opened said fridge and got out the eggs. He wanted a fried egg, so fried egg is what he got! Happy Birthday with a fried egg. That’s him on the right, eating an egg. This is our life. Life is good. We find the good.

*For those who might think “Oh, that poor child doesn’t get a birthday party,” don’t worry, Jeremiah is plenty spoiled in every other area of his life. 😉

life before and after seizures (Autism)

life before and after seizuresAutism + seizures = parents on edge, constant concern, and questions, questions, questions.

When Jeremiah was an infant he had seizures, he’s adopted and after he came to us we never saw more evidence of seizure activity. That was until he was about two-years-old. One night we woke up to this frightened cry, when we opened Jeremiah’s door, he toppled out crying, terrified, and shaking. Now, some could say it was a nightmare or a night terror. It felt different, I can’t explain it, but my Mommy instinct knew it wasn’t a nightmare (more about that later). Plus, afterwards he had significant regression in his abilities and understanding.

Until last week we hadn’t noticed any more seizures, but the thing is, there are absence and petit mal seizures. This means there’s no shaking, and they can often be invisible. says, “[In the case of petit mals] The person will stop moving or talking and stare into space for a few seconds. Some muscle jerking and twitching may also occur. Once the seizure has passed the person recovers quickly and carries on with what they were doing with no memory of the episode. These seizures can occur occasionally or very frequently, hundreds per day in some cases.” These seizures usually last around thirty to forty-five seconds. When Jeremiah had the episode two years ago, this is what they thought might be happening.

Last week he had another seizure.

It was frightening. Both kids were in the backyard and Payton was having a meltdown because she’d been asked to do something, and in her mind, she wasn’t able to complete the task. Jeremiah was out in the  grass staring at her, not too odd because he’d really been paying attention when she’s crying lately.

Justin brought Payton inside and called for Jeremiah to come in, but he didn’t move. Justin waited a minute and stuck his head out the door again, calling for Jeremiah to come inside and eat. Jeremiah usually responds well to this, but he still didn’t move. Justin went outside and picked Jeremiah up to bring him inside, at that time he didn’t notice, but he would later realize that Jeremiah was stiff when he’d carried him in.

Justin and I both had our attention averted elsewhere, on making dinner and on the girl who was throwing a fit about something ridiculous, so we didn’t notice until a little later that Jeremiah hadn’t moved on his chair. Justin had placed him on his chair standing, holding the back of the chair, because that’s what he does all the time. Finally it clicked that Jeremiah hadn’t moved and was still standing where Justin had placed him.

We quickly went to him, I felt his arms and there was a slight tremor in them and he wouldn’t look at me (as opposed to some people with Autism, Jeremiah will look at us when we talk to him) and was staring off into space, he wasn’t there. Justin picked him up, took him to the couch and began removing his clothes, we were thinking he’d been bit by something and it was causing an adverse reaction. We checked his entire body, but didn’t find anything.

Everything was so muddled, there was screaming in my ears, FEAR.

At some point I realized that he may be having a seizure. He then curled up in Justin’s arms in a fetal position and shoved his fists against his eyes for a minute or two, I don’t know how long, time drags when you’re terrified.

We then started his favorite movie to see if he would turn and look, and he did within a few seconds. That was a relief! I held him in my lap, wrapped him in blankets and he stared at the t.v. The seizure itself lasted about seven to ten minutes, which the doctors would later tell us was far too long to be a petit mal. He finally did come around to fairly normal, but we were fearful the seizure would cause regression, because that’s what happened the last time he had one.

All we could do was wait. And wait. And wait.

We picked him up the following morning at school and when I asked if he seemed his normal self, the aide nodded her head in a circular motion, meaning kind of. The teacher said he was lethargic. (We sent him to school because he was doing well, and for him, being out of routine is the worst, and we are confident his teachers are skilled enough to determine whether something odd is happening with Jeremiah.)

That day at home was near normal, but we still needed to see what he’d do in different situations and assess whether he still understood as much as before. As days passed we knew he was where he’d been before. Thank God!
The doctor is referring us to Children’s Hospital, which will take a few weeks, or longer since she forgot to put the referral in. He may need to have a twenty-four-hour EEG done, which makes me extremely nervous. But, I would really like to know if he’s having seizures more often than what we realize so we can do something about it. He’s had so many major regressions in his short life that I’ve always wondered if seizures were the cause, for a long while I was convinced. Yet, his skills and understanding have only grown in the past several months, so that’s wonderful.

The reason an EEG makes me nervous is because we’ve been through it before. After that episode about two years ago where I was sure Jeremiah had a seizure, they sent us to the local hospital for an EEG. No preparation was made for a child who has Autism, and it was a horrendous experience. 

Just try to take an Autistic child to the hospital, put them in a strange room, with strange people, then place dozens of sticky electrodes to their head, and have them relax while the brain is read. HA!!!! He screamed and writhed, livid because of what was being done, confused because he couldn’t understand what in blazes was being done to him. He screamed and fought until he fell asleep, but the techs were so irritated that after he’d only slept for ten minutes they decided to end the test and took the electrodes off his scalp. No evidence of seizures, because, see, the person has to have a seizure WHILE the test is taking place.

So, here we go. I thought that with my rare disease flaring up, and Autism, and my husband owning his own business life was full enough. Guess not. However, I’ve seen God carry us through the really tough, the impossible, and I know He won’t fail us.

*Another great example of seizures was shared this week by Faithful Mom of 9 on her blog, you can read about how her daughters seizures presented here.

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what if my special needs child lives with me forever?

what if my special needs child lives with me forever
I love the site, Not Alone. You can understand why just by the name alone (Ha!). Sometimes when we’re riding the special needs bus we feel alone. We feel no one else really gets us, our child, or our family. This is one great site that supports parents who feel such.

Todays post is on the shorter side, but that’s because I would like you to read two posts. I know I’m so mean!

On Not Alone, Ellen Stumbo wrote a perceptive article called, What if She Lives with Us Forever? Some of you face the possibility that your child will live with you forever.

We faced the reality about a year ago that Jeremiah will most likely live with us through his adult life. At first the idea was overwhelming. Typical parents sort of expect their children to grow up, move out, and then it’s the parents turn to play. Not so much when you’re a special needs parent, but I still struggle with those selfish feelings of wanting more “me” and “us” time.

Special needs parents are always on alert, there is rarely down time.

I do need more supports, and we’re working on it, but my view of Jeremiah living with us forever has changed. I feel a lot like the woman who wrote this article. I actually want him to live with me…IF that’s okay with him. 🙂 I adore him, I don’t know what my life would be like without him near because so much of it is enveloped in him. Selfish reasons I know.

It would be awesome if he was able to function in society, get a job, live alone or even better, find someone to love and spend the rest of his life with. That would be awesome! But, I can’t depend on that happening. This isn’t the typical life. And that’s okay!

Here’s what Ellen Stumbo writes on Not Alone, I can just about guarantee it will buoy your heart.

“Call me crazy, but one of the first thoughts that crossed my mind when my daughter was born with Down syndrome was, ‘Will she live with us forever?’

When my oldest was born, a typical baby girl, those thoughts would have felt so…outrageous! I mean, who thinks about their child moving out the day they’re born? But with Nichole it was different, Down syndrome rocked me and I was immediately wondering if she would ever live independently, if she would ever get married, if she would ever have a job…

I hope she still wants to do this with me when she’s 15, and 21, and 30 and forever.”

You can read more of what she wrote here.

Do you think your child will live with you forever? How do you feel about it? I hope todays post encourages you. Have a good one!

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I have Autism and the world treats me different

I have Autism
I have Autism, and the world treats me differently.

If your child has Autism, you know what I’m talking about. The stares, questioning looks, noses stuck so far in the air you’d think they were preparing for a dental exam, questions, comments, avoidance, accusations, recommendations, and rarely, smiles.

There are a variety of ways others respond to our Autistic children. A persons perceptions are sometimes based on their previous experience with Autism. This can be problematic because every child with Autism is different, they all have varying abilities.

If someone knows a person who has Aspergers (a form of Autism), they may expect another child with Autism to act the same way, trying to fit them in a peg hole. For example, our son, Jeremiah, has nonverbal Autism and has struggled developmentally, he is nothing like a child who is on the other end of spectrum. Some people assume he can talk, or understand directions that aren’t in his every day life. They assume we can take Jeremiah to events and he’ll stand next to us. It goes on and on.

They don’t realize that Jeremiah isn’t every other child on the spectrum.

A few of my friends have Autistic children who have more abilities than Jeremiah. In one area, they act very much the same, but in others, vastly different. One friend took her son to a get-together with friends, her son stayed near them and they were able to converse with others. What a strange and utterly impossible idea. For us. What would that be like? We don’t know because it’s never happened. Those who don’t have a child with Autism or aren’t immersed in the intricacies of it simply think that our children don’t behave and that we should do something about it. Ha! I give them a day to try, well not really, because they would want to strangle Jeremiah, and it would consummately devastate him.

Many times people say to me, “Autistic people are SO smart.” I agree, they are smart, but we don’t know if Jeremiah is a savant with a “special ability” that’s unique to him and him alone, nor do we expect it. He used to put shapes in the shape sorter faster than any adult – or at least I would bet on Jeremiah if it were a race, but he no longer plays with the shape sorter. As I’ve said here before, Jeremiah is ALWAYS in flux. Part of this expectation (Autistic people are so smart) comes from a person’s experience with a child that was able to speak and communicate in some form. Jeremiah does not.

When people see Jeremiah, it’s not obvious at first that he has a different ability, unless of course he’s waving his hands in the air like he just don’t care. If they’re around him for any amount of time, they should pick up on the fact that he’s different, doesn’t talk, doodles obsessively, stims (waving hands), and if it’s a bad sensory day, he’ll hit his head compulsively or try to bang it on the nearest available person.

And example of how others are treating Jeremiah is when we took the kids to the fair last week, and one of the employees said to Jeremiah, “Hey dude, high-five?” and held his hand up. I kindly said, “He has Autism and doesn’t talk.” Frankly, the guy seemed a little offended – okay, sorry he can’t give you a high-five. He said, “Hi,” and I said “Hi” for Jeremiah. The patrons standing behind us in line stared down at Jeremiah, no smiles. I don’t mind staring IF the offender smiles. 🙂

Our daughter, Payton, said, “Mom, those people are just staring at Jeremiah!” Payton has a very tender heart toward her brother, she’s his little protector. You can read more about how their relationship here. Sweet Payton couldn’t figure out why someone would stare at Jeremiah. I said, “If they’re smiling at him it’s okay.” She said, “They weren’t, they were just staring, like this,” then gave me an example. I said, “Okay, it’s not nice of people to stare, and if someone is ever rude to Jeremiah, you stand up for him.”
don't stare - smile and treat me like everyone elseUnfortunately, the stares are going to worsen. Jeremiah is growing and it’s more unacceptable than it used to be that he’s riding a wagon through the Farmer’s Market, or that he’s waving his hands in the air, he isn’t talking, his cry sounds like an infants, he’s screaming. He’s standing out more and people are noticing, hence some of them are gawking.

When we’ve had to explain to others that Jeremiah has Autism, we’ve received several reactions. (Usually the explaining comes because someone says hi to him). Someone knows someone who has Autism, they offer advice, they stare, not really knowing what Autism is (how this happens really boggles my mind), smile and move away, uncomfortable.

While on vacation this summer, Jeremiah was swimming. A woman who floated by him said “Hi”. Justin said, “He has Autism and can’t talk.” The woman smiled and said, “Oh,” and swam away. Hmmm. Autism isn’t contagious. Really.

Another instance came about when Payton was at the dentist recently and the hygienist asked if she has any brothers or sisters. Payton said, “I have a brother, he doesn’t like to play with me because he has Autism.” The hygienist replied, “Oh, good.” Did she think Payton said, “I have a brother, he’s ARTistic”?
be somebody who makes everybody

Others responses to Jeremiah’s Autism have been flying in my face recently. Just the other day we were at my husbands High School reunion and we were asked, “Why would you adopt a child who has Autism?” Wow, what do you say? There were several retorts I could have thrown, but I didn’t feel like his question was directed in spite, so I told him why (the nice version). I honestly wish that others knew how awesome Jeremiah is, how very special he is, how I wouldn’t want to live my life without him, how I can’t imagine my life without him.

Here’s a great post that explains why having a child with special needs is so awesome: 7 Reasons Why Having a Child with Special Needs Makes Life Better.

Our own family has had some interesting, sometimes unsatisfactory responses to our family. I can only imagine it’s because our family is so different, first we did foster care (we adopted both of our kids from foster care), and then Autism came into the picture. Because of these two major life altering scenarios, we do life differently. And so, we’ve been left out of holiday get-togethers. Family living in the same town has left us out of these celebrations. We can only surmise that it has to do with our kids, and now primarily because of Autism. Forget about my feelings on the matter, believe me, they run deep, but it isn’t fair to my children.

I have Autism, and the world treats me different. I have Autism, and my family treats me different.

The only thing that’s going to make any difference is the Autism community kindly educating others on Autism. So, go out and educate. Go out and spread the smiles. Go out and share with the world how awesome your Autistic child is.

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