Tag: #autismawareness

Interview With A Parent of A Child With Autism- Meet Kaitlin and Parker

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As we close out Autism Awareness month I want to share with you one more story. Meet Parker. His mom Kaitlin lives in my area and we are part of the same mom’s group on Facebook. I am grateful she is allowing me to share their story. It may sound familiar to you, or you may know someone who is currently going through a similar journey to find a diagnosis. Feel free to share this story with them: a real mom with a real struggle just like theirs.

Autism Awareness

How old was Parker when he was diagnosed?

Parker was 18 months old when he was diagnosed on the spectrum of Autism. I knew in my heart prior to the diagnosis. I think with knowing something was going on prior it was easier for me to accept. Two developmental pediatricians and a neurologist confirmed the diagnosis and still follow him.

 

What has life been like after diagnosis?

Everything I read about was so different than actually experiencing it. We began our journey receiving services through Early Intervention (OT, PT, Speech, Special Ed) and working with a licensed social work therapist (LCSW). All our services were in home so it was like a revolving door sometimes. It would be three services a day. We would make strides with speech and have some new words for a little while and then they would just disappear, like he forgets he learned them. One day they were here and the next they just disappeared. He had a lot of sensory needs. He would love being rocked, squeezed tight and disliked certain textures and loud noises scared him. Every day I learned some new.

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As Parker got older he became very aggressive towards others. He was hitting, biting, pulling hair and he would even bite himself when things would get overwhelming for him. It was hard to watch and accept. His activity level was extremely active and very dangerous. Parker has no fear whatsoever so, safety became a huge concern. He is also a runner/bolter. We recently became enrolled with Project Lifesaver with our local sheriff’s department. Parker wears a radio transmitter device that can aid in the location of finding him if he ever takes off.

 

How important is it to have support?

I am a single parent and having support is HUGE! I am thankful for my family who helps when anything is needed. My parents are our greatest support system and I would be lost without them!

 

What advice could you give to outsiders not familiar with autism?

Never judge a book by its cover. Prior to kids I told myself I would never use a backpack leash. But with his safety concerns I have too.

Kaitlin also recommends the following articles to help others understand more about what it’s like to be a parent with Autism.

The Mighty: 12 Things Not To Say to Parents of Kids With Autism

Today Parent: 11 Things Never to Say to Parents of A Child With Autism (and 11 Things You Should)

 

The Whatever Mom is a twin mom learning to let go of perfection. She shares her real life struggles with parenting through her blog and contributes her time and talents as a writer to Hudson Valley Parent and Masshole Mommy. When she isn’t writing you can find her chugging coffee, folding laundry and not judging other parents. Don’t forget to subscribe via email so you never miss a blog post again! You can also find her work featured on Mamapedia and The Novice Mommy. 

April 2nd is World Autism Day

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Happy Saturday!

I know, I typically do not post on a Saturday. But, today is an important day to share. April 2nd is now celebrated as World Autism Day and it kicks off a month long celebration of difference and spreading awareness about Autism. Not only are the statistics alarming (1 in 68 are diagnosed), but it is more alarming how difficult it is for autistic individuals and their families to find acceptance and understanding. This boggles my mind because we are so much more alike than we are different.

Years ago, I worked as an assistant in a school for autistic children. I worked in the preschool classroom during the morning and then in the afternoon I worked in the older classrooms. I have witnessed miracles happen and I have witnessed heart breaking sadness for children working so hard to cope. That experience changed me forever. In fact, after two weeks on the job I said one day I would write a book titled, “Everything I Needed to Know about Life, I Learned from Autism.” Later, I found a deeper passion linking parents to therapeutic services for their children. My wish would be that everyone could see autism the way I do- through love, compassion and understanding.

I found this post when I logged onto Facebook this morning. It is written by my friend Erin who is an amazing mom, a “Coastie wife” the owner/designer at Rose Door Designs; and now mother of an autistic son. I agree with her message and I simply love how beautifully she has shared her and her son’s story.

Erin and Liam

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“Today is World Autism Awareness Day. And while I think it’s great (really!) if you want to change your profile pic, Light It Up Blue, or even share my cover photo, those things won’t necessarily make you or anyone else more “aware” of autism. But knowing someone who is autistic might.

My Liam was diagnosed with autism spectrum disorder in June 2013, just before his fifth birthday. He doesn’t “look autistic;” for many people he “seems normal.” But the more time you spend with him, the more pronounced his differences become…and the more amazing you realize he is. Liam struggles every day in a world that often overwhelms and doesn’t make sense to him. He shows up and he does his best and he fights his way through. He’s brilliant and funny and talented and sweet as can be. He’s my hero.

So today, you can say you know a person with autism. One person. Because every person with autism is unique. There are no cookie cutter signs or symptoms; you can’t spot it from across the room. Autism doesn’t come wrapped in a blue puzzle piece ribbon.

For anybody out there facing an ASD diagnosis–whether it be your kid, a friend’s kid, a family member–IT’S GOING TO BE OK. I promise. You will find your way. There are helpers. Liam has been able to make remarkable progress since his initial diagnosis thanks in large part to the incredible work of some really amazing special educators, regular classroom teachers, therapists, school psychologists, aides, and paraprofessionals. So, to those of you doing that really difficult, really important work: THANK YOU. I know it doesn’t always feel like it, but you make a huge difference in the lives of kids like mine every single day.

If you have any questions about Liam, what autism looks like at our house, or about ASD in general, I’d be happy to try and answer them. It is, after all, World Autism Awareness Day.

Love and light,
One Lucky Mom”

When I asked Erin for permission to share her post she asked me to really emphasize the value of the hard work special educators put into helping kids like Liam, “Special educators are absolutely saints and deserve millions of dollars and their own velvet roped VIP area in heaven. We are so, so thankful and forever indebted to his teachers and aides. They have loved him like their own and have made it possible for us to be better parents.”

I also asked Erin if she could offer any advice about what kind of support she needs as a parent, “I guess the best support anyone could offer me would be to try to understand. Ask questions, be observant, and offer to help maybe (though I’m not big on accepting help! LOL). It drives me nuts when people say things like, “Oh, he’ll be fine,” or “He looks so normal,” or “He doesn’t seem so bad.” It may be true in that moment, but they haven’t seen the day to day struggles.”

I would like to add to Erin’s advice by saying don’t judge a parent by their child’s behaviors. A child struggling to cope in public can often look like they are “misbehaving” and believe me EVERYONE has an opinion on how to handle THAT child. None of that advice is helpful. Instead, ask, “What can I do to help?” “Is there anything I can do to help you right now?” Sometimes just offering help with compassion offers enough room for a parent to take a breath and face that struggle. Sometimes knowing you are not alone in the struggle is all it takes for families living with autism to feel accepted.

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To learn more about Autism and how it affects families visit http://www.autism-society.org/

 

The Whatever Mom is a twin mom learning to let go of perfection. She shares her real life struggles with parenting through her blog and contributes her time and talents as a writer to Hudson Valley Parent and Masshole Mommy. When she isn’t writing you can find her chugging coffee, folding laundry and not judging other parents. Don’t forget to subscribe via email so you never miss a blog post again!

 

 

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