Tag Archive: understandingautism


While reading a fellow bloggers newest post I felt the need to share it because it struck a cord. It made me stop and think about  how being a parent to a child on the autism spectrum (any parent in general can relate), we try to do everything to ensure that we are able to provide the best for our children however some times we often over look what they really need / would really benefit from. It was a good reminder to take an extra moment to really think about what my son and I are doing let alone looking at the bigger picture when it comes to helping my son grow.

The post was called Learning to Be More Open to What My Son on the Autism Spectrum Really Needs.”    and was written by Kim McCafferty.

“Twelve years ago this month, I walked into our pediatrician’s office with my then-17-month-old son in tow, hoping for a prescription for reflux. I walked out shaking, crushed by our doctor’s callousness, and clutching four mis-stapled and badly copied articles about autism in my trembling hands. Our pediatrician never uttered the word himself, just told me to call a developmental pediatrician, thrust some numbers on a stickie into my hand and left the room.

He wasn’t our pediatrician much longer.

I remember being in shock as I left the office, as we’d just been in four weeks prior and our insensitive doctor had not seemed that concerned with the delays our toddler was demonstrating. I also remember as I made my way to the pharmacy to fill that prescription, which would at least let me help him with his reflux. I called upon my experience with the few autistic children I’d had as a teacher in my homeroom and classroom, thinking those few encounters would give me a leg up on raising my own autistic child. Boy, was I wrong.

As they say on “Game of Thrones,” I knew nothing, Kim McCafferty.

The year was 2004, a time when Jenny McCarthy was talked about a lot in the autism community. While navigating doctors appointments and the murky and ultimately deeply disappointing world of what passed for Early Intervention in northern Virginia, I spent any time I wasn’t interacting with my son researching autism on the internet, and God was it confusing.

There were parents claiming the only positive outcome of this diagnosis could be a “cure.”

There were autistic advocates and parents of autistic children claiming an alternative neurology cannot and should not be “cured.”

There were professionals informing me that studies showed that sign language gave kids an edge over learning to talk and should always be employed.

There were professionals informing me that alternative methods should always be explored, matching the child’s strengths to the appropriate communication system.

There were parents telling me not to vaccinate.

There were physicians telling me I’d better vaccinate.

There were parents explaining to me that a public school program was the way to go for their opportunities for mainstreaming, which should be my ultimate goal.

There were teachers sharing with me that despite the push for it, mainstreaming might not be the most important goal regarding my son’s future education.

As I look over my list, I realize not all that much has changed in a dozen years.

I did my best by my son Justin in those early and isolated years, reading and attending workshops whenever possible. I often felt the two of us were drowning back then, combating my son’s insomnia, aggression, gastrointestinal disorders and his adherence to having things a certain way (he would eventually receive a dual diagnosis of OCD and autism). My husband worked, our families were three hours away, and all my friends either had careers or were busy raising babies of their own. I often felt adrift at sea, anchor-less.

Ultimately what I clung to to get through it all were my choices regarding Justin’s therapy, usually based on articles I’d read, clutching their information to me as tightly as I had clutched those initial articles which had in one instant completely altered my world.

I displayed my own rigid behavior regarding that information. According to studies I’d read, sign language more often gave way to words, in my opinion a must for my boy even though his fine and gross motor abilities were delayed.

I was told that he should absolutely attend a public school program both for the chance he’d mainstream, and so he’d make friends with neurotypical peers.

And if it weren’t for professionals who gently offered me alternatives to both of these choices and asked me to keep an open mind, despite my best intentions, I might have done my son more harm than good.

After we moved to New Jersey and actually received appropriate Early Intervention services (yay the Garden State!), I clearly recall one of the therapists from Rutgers gently pointing out to me that after more than a year of working with my son, he only had a handful of signs, and some of those were used sporadically at best. I remember initially feeling that using the PECS system meant giving up on words, instead of focusing on the fact that my then 22-month old might actually end up with a way to communicate his needs other than by mostly crying.

If I hadn’t listened, he might have spent many more months often frustrated by his mother’s inability to read his mind.

I had that same rigid mindset originally as from Virginia we attempted to find the most fantastical, amazing, perfect autism program in the perfect NJ town (oy!) because I wanted my son in the public schools for the mainstreaming opportunities, and I didn’t want him sent out of district. At the tender age of 3 I wanted him to have opportunities to engage with neurotypical peers. I wanted him to have friends, to interact with others. This was the most important goal in my life, more than losing that last seven “baby weight” pounds or consuming large amounts of chocolate every day.

OK, that last is still an important goal.

After four years in two different public school districts, it became apparent that the only one who cared about his interactions with neurotypical peers was me, and that his home school district really didn’t have an appropriate program for him anymore. I remember my mom, a special educator with three decades of experience, gently telling me to look at the big picture for Justin, that perhaps him having friends was not the most important issue now, that in fact Justin really didn’t seem to care about his peers. I recall making the mental shift to becoming open to sending him to a private autism school, where educators could help him focus on the academics he loved so much, where down the road he would have better access to job programs and adult programs, and hell, even a swimming pool he’d frequent daily during his eight-week summer program.

I’m still learning how to make the shift from wanting for Justin what I think he should need to what he really needs (it remains a learning curve for me), and by keeping an open mind, I know my choices for him have contributed to the thriving, happy teenager who loves school and loves his life. I still struggle to do this with both my boys (what parent doesn’t), often employing a “what would Zach/Justin do” mentality when considering my options.

And I still make mistakes. I am still sometimes slow to recognize a shift in need, still working on ridding myself of “what should be.

But as with many things in life, I’m still a work in progress, and keeping an open mind is one goal I plan to keep.

their opportunities for mainstreaming, which should be my ultimate goal.

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I came across this and figure it’d be a good reminder with the holiday season about to ramp up.

 

Originally written by Heather Boorman 
And can be found here:
5 Ways Friends Can Support Parents of Children on the Autism Spectrum

 

“I know many of us are probably glad to have another Halloween behind us and don’t really want to revisit the holiday for another 360 days (or in three days when our kids start planning what they’re going to be for next Halloween). Bear with me, though. This story does include Halloween, but it isn’t really about Halloween at all.

My husband Jon and I often work opposite schedules, and Halloween 2016 happened to fall on a night when I was parenting solo. I mentioned this to my friend, Rachel, who immediately invited me and my three kids over to eat dinner and trick-or-treat with them.

About halfway through dinner, I could tell my daughter KBear, who is on the autism spectrum, was getting overstimulated. About three blocks into trick-or-treating, she said her legs hurt. About three-and-a-half blocks into trick-or-treating, she said she wanted to go back. My 11-year-old and 4-year-old were nowhere near being done.

Before I even had a second to fret about what to do, my best friend came to the rescue! I’m pretty sure Rachel was wearing a cape and there was a superhero anthem playing in the background as she leapt in and calmly asked KBear, “Would you be OK going back with me? I think the baby’s had enough, too, and we can just go back and relax.” KBear slowly nodded her head and journeyed off with my friend. My shoulders dropped, my mind eased, and my boys and I carried on and stayed out as long as they wanted to.

I remember the first time KBear had a meltdown in front of Rachel. I wasn’t sure what was going to happen or how my friend would respond. I heard her son ask questions and express uncertainty about what was going on. And then I heard my friend calmly explain to her son, in a nonjudgmental and totally compassionate way, that KBear has some differing wiring that can make it difficult to control her body and emotions sometimes. I heard my friend help her son relate by bringing up examples of moments when he had felt out of sorts or overloaded. I heard my friend calmly ask what she could do, what would be helpful, and I saw her patiently sit with calmness, acceptance and love. She occasionally asked if there was anything she could do and then refocused attention off KBear’s meltdown by quietly entertaining the other kiddos. After the meltdown, my friend hugged me, told me I’m a good mom, and reinforced that she’s here for whatever I need.

I am tearing up now as I write about it. Why? Because I feel she was perfectly supportive. Because so many people respond differently. Family, friends and strangers oftentimes back away. Occasionally, they’ll stare or say rude comments. Sometimes they’ll give unsolicited advice. And I get it. Many people don’t know how to respond. Most often I don’t feel like I know how to respond, and I do this every day. How can I expect other people to understand and know what to do?

I didn’t realize just how much I was missing the type of support my friend provided until she gave it to me. I know my family and friends are there and would do anything to help, but I didn’t even know what would be helpful to ask for. They regularly ask what they can do, or tell me they don’t know what to do. And until Rachel intuitively showed me, I couldn’t put words to what I needed.

So I’ll use Rachel’s beautiful examples to highlight what I, and possibly other parents, would find helpful in the midst of a meltdown.

1. Respectfully taking initiative. One of the things I appreciate most is Rachel respects my role as the parent and follows my lead as I’m dealing with KBear, but she simultaneously steps in to simply do the other things that need attention. She entertains the other kids. She continues making the snack. She provides quiet space. In the midst of managing a meltdown, my mind is working fast to try to address safety and emotion regulation. I cannot always think beyond the immediate risk to provide direction for all the other stuff. It can be helpful when others just take the lead on those.

2. Occasionally asking if there’s something I need. She doesn’t ask too often, which I find helpful given my state of my mind, as described above, but every once in a while I’ll hear a simple, “Anything you need?” It reminds me my daughter and I are not in it alone. It gives me the opportunity to ask for something we’d need without having to take my full attention away from my daughter.

3. Validation. As parents of children on the autism spectrum, we sometimes live in high stress. We often need to simultaneously plan everything out and be prepared to have all our plans derailed as behaviors occur. To be seen, to be heard, to be validated, I’ve found, can be so incredibly healing.

4. Validation. No, this isn’t a typo. We need validation of the challenges, but we also need validation that we’re doing a good job. It can be so easy to doubt ourselves as parents. And something that worked yesterday may not work today. We can easily feel like we’re failing or completely screwing up. Hearing from my friend that I’m a good mom, hearing from my family that I am patient and compassionate with my daughter — these are things I cling to on the days when my thoughts tell me otherwise.

5. Eyes filled with compassion and acceptance. I feel this is by far the most helpful thing. I’ve found fear, uncertainty, worry and concern can all start to look like judgment, whether intended or not. Eyes that turn away because they don’t want to stare can feel like avoidance, judgment, or like we’re all alone, or that we’re too much for others. Looking the meltdown square in the face, seeing the people who are in pain underneath the behaviors, and showing compassion and straightforward acceptance helps set my mind at ease. It helps me be able to focus entirely on my daughter and my own reactions instead of getting distracted by potential judgment. It can create an environment of love, which girds me up to respond with love, which I think is far more effective in any meltdown situation.

And here’s the deal, it is necessary for us parents to have this. It is necessary for our own well-being to have at least one or two people who can provide these things. It is necessary to feel supported, understood, like part of a team. And sometimes, we can simply be blessed with people in our lives — like Rachel — who do these things naturally. More often, we may need to teach people what to do. Most often, loved ones want to help; they just don’t know how. And if you take the time to teach them, to assertively ask for your own needs to be met, you just might be able to enjoy trick-or-treating next year, too!”