Category Archives: Guest Posts

Poof!: Losing an Autism Diagnosis

Guest post by Jessica Severson.

When my son was a baby, it was obvious pretty quickly that I didn’t fit in with the other moms. I didn’t want to get together and chat about breastfeeding or potty training. My son was on formula (which always required an explanation) and he was colicky for so long that you couldn’t call it colic anymore. He was a tough baby. He was often upset. Getting ready for naps was hellish. It only made it worse to sit around with other mothers who were so happy with their joyful, calm little ones.

I felt alone for a long time. Then my son was diagnosed with autism and I understood why I’d never fit in with the normal community of parents. We were different. And it wasn’t just in my head, it wasn’t just a difficult adjustment to motherhood.

So I started the search for community again. I found parents of autistic children of all ages. They understood how I felt, they knew all the conflicting emotions, they sat through hours of therapy sessions. I got advice and support and began to feel like maybe I belonged.

Over the course of 2 years my son’s improvement went from inch-by-inch to mile-by-mile. The issues he’d had began to fade: he went from nonverbal to a budding vocabulary, his meltdowns turned into plain-old tantrums, his stimming became normal pretend-play where trains chatted with zebras, his fear of other children subsided in favor of games and playgroups. We saw less frustration and more happiness. He became more easygoing, more outgoing, more enjoyable.

After his diagnosis I didn’t dare to hope for much. I wanted to love my son no matter what, but then all that I’d hoped came true, and so much more.

It should have been the best kind of news. But I couldn’t feel completely happy about it.Now I’m told that in a few years my son will be re-evaluated and his doctor expects that he’ll lose his diagnosis. I will no longer be An Autism Mom or A Special Needs Mom. I will no longer be a member of the community that gave me a home when I needed it most. Maybe it’s already started.

We will still be friends. But my experience, where I lived in the thick of autism for only a couple of years, can never compare with theirs. Their daily challenges, their searches for therapists and schools that care about their children and help them to become a part of the world, it’s no longer something I can empathize with. I am an outsider. Now I’m supposed to make my way among the NT’s (neurotypicals) that we’ve always talked about.

My journey wasn’t for nothing. It may have been short, but I learned lessons most parents never will. I’ve experienced the kind of heartbreak and guilt that most parents never have. I no longer live in a bubble of parental ego-stroking where I get to feel responsible for my child’s accomplishments. I’ve seen just how fundamentally my son achieves things on his own. I’ve learned that developmental milestones have nothing to do with mental or emotional intelligence. I’ve learned to never say, “I don’t know how you do it.” I know the secret: you just do it. You have to. There’s no other option.

Still, I’m not sure where I fit now. I don’t know who my peers are. I don’t know what I have to offer other parents. I used to feel good because I was out there helping people navigate a difficult time. It helped to get emails from parents who’d just received a diagnosis or concerned grandparents who were trying to figure out how they could understand this change in their families. Now, what do I say? How can I tell them to accept the diagnosis when I no longer have to make the same sacrifice? Do I want them to hope for an outcome like ours when I know it’s just not possible for everyone?

And then there’s the issue of how to feel about losing the diagnosis. I’m happy for my son’s progress. But I don’t want him to be ashamed that he was autistic. I don’t want him to feel like he is better than someone with autism. How do I avoid alienating adult autistic advocates who want autism to be something without stigma or shame?

I can’t answer these questions so I’m trying to focus more on my son. What impact will it have on his life to lose his diagnosis? Does he need to know he had it? Will we tell other people? How much is it a part of him and how much of it is separate from him completely? Will he have to worry about a higher risk of autism or other disorders with his own children?

I’m trying to take it a step at a time. I’m trying to find my way through day by day, just like I did when Graham was diagnosed. Maybe I’m ready for the normies. Maybe I’m not. But the thing I know for sure is I have a lot more friends now and a lot more support. Whatever comes, I think we’ll figure it out.

Jessica Severson

Jessica Severson is owner/writer at Don’t Mind the Mess.  Jessica’s bio is interesting enough.  I’ll let her speak for herself.  😉  

 

What Autism Means to Me

When asked to write about what autism means to me, I jumped right in. I had a metaphor ready, and I set my fingers to the keyboard. But everything I typed in my first draft was no good. So, I tried to look at it from another perspective. Then another. Before I knew it, this simple question gave me a serious case of writer’s block. It seemed that no matter what I wrote, someone would take issue with it. Somebody would angrily declare, “That’s not what autism is to me!”

And he’d be right. Autism can be described. But it refuses to be defined. That’s because autism will never mean the same thing to two people. Especially if those people are coming from different perspectives. Parents vs. teachers. Grandparents vs. parents. Science vs. conspiracy theorists. Parents of “low-functioning” children vs. “high functioning” self-advocates. The media. Public perception.

It’s a lot of cooks in the kitchen. Their problem is that they can’t all agree on what they’re cooking. They all want different things. They all approach autism from their own subjective experiences. They observe autism from their respective places and report back to the world – which constructs its concept of autism from these reports. And that is problematic.  (This article is continued where I’m guest posting today at A Dog for David…)

When Siblings Have Special Needs

My beautiful Bronwyn.

Our siblings. They resemble us just enough to make all their differences confusing, and no matter what we choose to make of this, we are cast in relation to them our whole lives long. -Susan Scarf Merrell

When my husband and I decided to start our family, I knew one thing right off. I wanted my child to have siblings, and I wanted them to be close in age. Having been an only child myself, I envied my friends’ boisterous households. Say what you want about the benefits of being an only child. But playing with flashlights under bed sheet tents just isn’t as much fun when you’re by yourself. And now that I have mourned alone the passing of my father and am dealing with the declining health of my mother, I have a greater understanding of what a sibling really is.

So, within 11 months of my daughter Bronwyn’s birth, I got pregnant again. When she was 20-months-old, we were blessed with her brother, Callum. Having two babies under the age of two was quite an challenge, but I had all sorts of pre-conceived notions of how close they would be, how well they would play together, and how they would one day have each other when their father and I are no longer here. Visions of little league, dance lessons, scout meetings, and excited Christmas mornings danced in my head. And I briefly enjoyed the illusion that life would be what I had ordered up.

Continued at What to Expect, where I am guest blogging today…

7 Tips for Being a Friend to a Special-Needs Parent

Today, I’m honored to be guest posting for WhattoExpect.com.  

Three years ago, I gave birth to a beautiful baby boy we named Callum. He was, and continues to be, a joy to us. But, shortly before he turned a year old, I began to notice the telltale signs of autism. We soon were thrown into the world of developmental therapies, specialists, and ESE. It was a frightening time of worry for his future and adjusting to a reality not quite like the one we had envisioned. And, though we adore him and wouldn’t trade him for the world, his needs have certainly affected every part of our lives. One of the things I wouldn’t have expected it to affect was my friendships. But it did. Some of the people I expected to be there weren’t. And some people I never expected to be there were. Often, I have noticed a hesitation or awkwardness on the part of friends who just don’t know what to say or do. I know they care. And I know they mean well. They are, quite simply, at a loss.

Here is what I would like to say to them and others like them, if they were to ask how to be a friend to a special-needs parent:  Continue Reading…

Dear Superintendent of Schools

Mrs. __________’s Note Home

 

 

 

 

 

 

 

To:  The Superintendent of Schools
Subject:  Mrs. __________’s Note Home
CC:   Mrs. _____________, the School Principal, the Director of ESE, school district administration, all School Board Members
BCC:  Flappiness Is, Facebook, Twitter, the Internet

Dear Superintendent:

Congratulations on your recent election to the office of Superintendent of Schools for our county.

I know that you have been in office just a few days.  And I am positive that right now everyone wants something from you, questions answered, or to elicit your support for their personal concerns.  I am happy to say that I do not need for you to do anything for me.  Well, not at this time anyway.

What I would like to do is draw your attention to one of the 9000 employees of your district.  Her name is Mrs. _____________, and she teaches at ________________ Elementary.   Mrs. ___________ is my son Callum’s teacher. Continue reading at Childswork/Childsplay Blog…

 

 

Immeasurable Gifts

My beloved Daddy and Callum at his 3rd birthday party.  Taken a few weeks before his passing.

My beloved Daddy and Callum at his 3rd birthday party. Taken a few weeks before his passing.

Today, I am guest posting over at Childswork/Childsplay.  Please visit me there by clicking “Continued”.  :)

On the day after Thanksgiving, I threw myself into Christmas.  I woke up my husband early and insisted he go and get the tree and ornaments out of storage.  It is our first Christmas in our new home, so I was determined to make it a good one.  It is awfully hard to not have fun decorating with little ones.  I loved every minute of it.

But for all the tree-trimming and elf-on-the-shelf fun, this year it is bittersweet.  It is the first Christmas without my beloved daddy, who died in May.  Daddy loved Christmas.  He was one of those rare people who get the true spirit of the season.  He whistled Christmas tunes everywhere he went and put up tacky decorations everywhere just for the joy of it.  He couldn’t care less about gifts.

Continued…

As You Are: An Open Letter to My Son

Callum planting one on his pesky big sister for the very first time.

Today, I am honored to be guest posting on Childswork/Childsplay.  Some of my favorite bloggers are regular writers for Childswork/Childsplay, so I was thrilled to be asked.  :)

And, if you will be so kind as to remember Callum in your thoughts and prayers, I would greatly appreciate it.  He is hospitalized right now for abdominal pains and tummy troubles.  It’s been a long night for us both and hard on this mama’s heart to watch him suffer.  

Please click below to read the entire post.  

Dear Son,

I don’t know if you will ever be able to read this.  I don’t know that one day you won’t be able to read books of all kinds and share your thoughts with me.  You are only three years old and are mostly non-verbal.  You are autistic – which means you are affected by a neurological condition that impacts communication and processing.  At this point, much of your behavior is influenced by autism.

But here’s the thing.  Every human soul enters this world with a personality that is unique.  And, although you certainly will change between infancy and adulthood, the part of you that is you is apparent from the start.  Yes, autism is an inseparable part of who you are.  But it isn’t all of you, baby.

Most children are loved by their parents.  That is the birthright of every human being.  But not every child is liked by her parents.

Continued…

I Talked to a Bunch of Third Graders…and I Liked It

If you are a regular reader, then you already know I don’t often invite guest bloggers to post here.  But my friend Lizbeth who blogs over at Four Sea Stars wrote an awesome post today about a subject close to my heart — parents speaking fearlessly about autism directly to those who are in their child’s life.  I believe in this approach and have often lamented this wasn’t done for students I’ve known in the past.  Lizbeth’s approach to speaking with these kids was genius.  And she succeeded in positively impacting the relationships between her son and his peers.  She also made me cry. 

If you are thinking about taking this approach to helping your child’s peers and teachers better understand him/her, you need to read this post.  It will warm your heart. 

-Leigh

I went into school the other day to talk to Alex’s class about Autism.  Nothing instills fear in me as much as talking to a small hoard of third graders.  Kids—they are unpredictable, they are young and for the most part, they say what’s on their mind.

They scare me.

Earlier in the year we had an incident where Alex was bullied and that spurred the question of, “What do the kids know about Autism?  Do they know anything?  Do they even know he has it?”  The answers came back as no, no and no.  The kids knew nothing.

I though that maybe if they knew something, heck anything, there may be some compassion.  They may have some understanding of why he does what he does and maybe with understanding would come some form of acceptance.    

I’ll be the first to tell you, I worked with our school to do this.  Our teachers are great and in some ways I am really blessed.  They get it.  They get Alex.  They get me and they are willing to work with the things I suggest.

I had a PowerPoint presentation and from that presentation, I made a book for each child in Alex’s class.  I wanted each one of them to have something to bring home so their parents could see what we went over in class.  Truth be told, I did it in the hopes that the parents would know what I talked about, and maybe just maybe, there would be further discussion at home.

Anyway, it turned out to be really interesting.  And enlightening.  For all of us.  The kids were really interested.  The teacher had told the students on Monday I would be coming in, later in the week, and asked if they had any questions about Autism.  None of the kids knew a stitch.  They wanted to know things like:

  • Can I catch it?
  • How do you get it?
  • What is it and where does it come from?
So when I went in last week, we had the presentation on the White Board.  They use this all the time in class and it’s basically a computer screen on a white board (imagine that) on the wall.  The kids all sat around in a circle eating their snacks and before I could even start a boy asked, “What is it?”
 

Siblings, Stress, and Love: A Big Sister’s View of Autism

This is a guest post by Leah Kelley of 30 Days of Autism.  Leah is a K-12 Special Needs Resource Teacher and blogs about her experiences both as a teacher and as the parent of a child on the spectrum.  I found Leah after reading her wonderful post Treasures I Found at the Thrift Shop: Autism and Understanding.  Leah also presents on issues regarding autism and literacy and has been published in reading/language educational journals.  I think Leah is a fantastic writer and advocate for our community, and I am so pleased to welcome her to Flappiness Is.  Today’s post specifically addresses a topic that has been on my mind since viewing Alicia Arenas’ TED Talk “Recognizing Glass Children” – a powerful talk about the hidden pain of siblings of special needs children.  Having a neurotypical child as well as a child with ASD, I have been giving this subject a lot of thought recently.  In this post, Leah shares her and her daughter’s thoughts on the sibling experience.  Thanks, Leah!

I have a beautiful daughter who will be 18 next week. Nika was almost 6 when H was born. He was like having a real baby doll and she was just awesome with him. Nika was precocious and very social: she talked early, walked early, and she was and is very musical, witty, articulate, academically bright, and strong-willed.

Tonight before dinner H was showing Nika the butterfly knife that he created out of Meccano, and his Villagio (our name for Value Village) leather jacket. (Lately H is working to emulate Mutt Williams – son of Indiana Jones from The Kingdom of the Crystal Skull.)

Nika said he looked like a small biker. Then she added, “Somebody once asked me if there was ever a Zombie Apocalypse what would you want to have with you? I replied with: A convoy of armored trucks and my little brother, because when all else fails he will find a way to make something useful out of the rubble and remains of civilization.

The two of them then got into a hilarious conversation about how Nika would be the driver because H’s feet won’t reach the pedals, and laid out contingency plans, roles, and responsibilities in case of an actual Zombie Apocalypse.

This is a good place to be… and my policy is… when the going is good, sit back and enjoy, because it will get tricky again soon enough. I don’t need to go looking for tricky or troublesome – it will find its way to my door. I love this interchange because it is representative of the amazing relationship that is developing between my children. H adores his sister, and he misses her deeply and terribly when she is not around, and Nika is coming to a place where she is able to really see and admire certain qualities in her brother, and I see in her some budding advocacy tendencies. I like that!

Some of the best advise we had when H was diagnosed with autism was that it was important to understand that a sibling goes through the same process of grief that the parents do: shock, denial, anger and finally acceptance. I suspect that neurotypical siblings (NT sibs) can also feel guilt that they do not face the challenges of their sibling and/or that they have no right to complain or feel life is difficult. This is huge pressure for a child.

The lives of  NT children can be deeply affected as the entire family system works to accommodate the complicated needs their sibling with autism. It can be difficult for the NT sibling to express any negative thoughts without feeling like they might be terrible or not worthy of love. However, the feeling of being pushed aside is understandable and at times likely justified, and parents need to be open to the expression of this so they do not drive these feelings inward in an unhealthy manner.  It is understandable that an NT sibling might, at times, feel resentful. Life just got a whole lot more complicated.

It can be hard to be the sibling of a child with autism. It can be hard to have to tone things down and keep a calmness to routines because your mom is constantly watching and saying things like, “OK now… that was funny, but let’s not rev H up.” When you are excitable and full of life and fun, it is difficult to have to rein in impulse so that your parents are not stressed by your brother’s potential melt-down.

Painted by Nika

There have been times when H has said insensitive things and really hurt Nika’s feelings. There was an occasional time when he hit her, and many times when he has irritated her with his persistent talk about his present topic of interest. Usually – these have not coincided with Nika’s interests.

It can be hard to have the sensitivity to know that your parents are anxious and worried and that they have to focus so much time and attention to the newcomer. It can be hard not to want to set him up and see his wheels spin, and bug him to get back at him a bit for what you know your family is sacrificing… for what you may be sacrificing.

Nika was willing to help me with this post, but when I asked what she would like to share she said, “I don’t know… I don’t really think about it anymore. I am just so used to it.”

So I decided to interview her:

What is your earliest memory of your brother?

Laying at the cabin and reading him Little Rabbit’s Loose Tooth or some other book.

What do you remember feeling about him being different?

I remember that you always seemed busy with him and I felt pushed off to the side. You were busy taking him to tests or staying up late working on funding stuff. Sometimes you’d be so tired from dealing with him that when we got time to be alone together you would fall asleep. I understood but it was still frustrating.

What are your hopes for H as you see him get older?

I hope that he can live a normal life just like anyone else and that he can take care of himself and be on his own and be his own person.

What role do you think you might play in his world?

To be there for him if he ever needs anything. To be there to listen to him and give him advise. Just to be there when ever he needs me to do what ever I can.

What is your favourite thing about your brother?

He is fun to be around – It is always an adventure. He is just chill and laid back. We can hang out together and it is easy. He may not have advise for me but I can talk to him and he listens.

What has been a hard thing to get used to?

Just that he is slower to learn and respond and sometimes I forget that.

What makes you mad?

I don’t know… just when sometimes he seems to not be listening and it feels like it is on purpose, but it might be just that he didn’t hear me or it didn’t register.

Is there anything H has taught you?

He has taught me how to be strong, because I know that school is rough for him and he has always made it through and he seems to stay true to himself.

What advise would you give to siblings of a child with autism?

Tell the other child to be understanding and that it is not always easy. It is strange that no matter how mad you can be at your brother or sister – but if someone bothers them you are right up there to defend them. You may feel it might be easier to have a sibling that is so-called typical, but you love them and they are still your brother or sister either way and you love them no matter what they struggle with. I believe that having a brother with autism has made me a stronger and more rounded person. This has given me a better understanding of the many types of people out in the world that may seem like everyone else but may be struggling with challenges that we can’t see. So having a sibling that has an invisible disability has made me realize the truth and relevance behind the statement “you can’t judge a book by its cover”

Nika and H

You can cry – I might too…

My little brother is my best friend and even though it is sometimes a struggle I would not change him for any other brother or sister in the world. I accept him for who he is and I just hope that some day the world can do the same.

Thank you Nika, for sharing your thoughts, memories and insights. Love you honey!

If you enjoyed this post by Leah Kelley, you might also like:

Tic Tacs: A Light-hearted View of Autism Intervention

Coping With Anxiety: The Power and Message of a Parent’s Response

Mom, Tell Me What I Did Wrong: Autism and Social Development