Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #218~Special Needs Parents,What We Need From a Friend

Blog #218~Special Needs Parents, What We Need From A Friend

Parenting a child with special needs can be lonely.  Having a support system is crucial to maintain a positive well-being.  Uncomfortable situations, surrounded by raising a child with special needs, make it difficult for people to know how to help as a friend.  My son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism.  My close friends keep me sane, make me laugh and understand what I go through.  As a parent of a child with special needs, here is what we need from a friend.

Friendship Beatles

We need a friend to understand.  Parenting a child with special needs is a constant battle with schools, doctors, insurance companies, and daily behavior challenges at home.  Add sleep deprivation to the mix, and you have one cranky parent at times.  Imagine starting your day off, washing sheets and cleaning excrement off the wall and carpet of your child’s bedroom.  In this code brown emergency, your child goes downstairs and dumps out your freshly brewed coffee all over the kitchen floor.  This is a page out of my story some 15 years ago.  It’s the story of so many parents dealing a child who has Down syndrome and/or autism.  We rely on our friends to listen without judgement, and to understand the pressure and challenges we deal with everyday.  The best of friends, roll up their sleeves and pitch in.

hands and heart pic

One vacation in New Braunfels, Texas, my son got hold of my make up bag and made a huge Picasso mess on the bed sheets in the rental house we shared with friends.  My friend Sally, poured us a glass of wine, and jumped right in scrubbing the stains with me as we laughed at the absurdity of the moment.

A good friend, says “Tell me what I can do” instead of “Call me if you need help”.

As special needs parents, we need our friends to listen and understand that sometimes our world is so complicated, that we may have to decline invitations or cancel at the last-minute.  But please, don’t stop inviting us, sometimes we just need more lead time in order to secure a caregiver for our child.  Other times, our child may be having a bad day or meltdown and we just can’t get out of the house.

babysitter for autism

As a parent of a child with special needs, we also crave normal conversations.  Sometimes we are stuck at home, with our kids.  Please, don’t worry so much about us being too busy.  A simple text goes a long way, as does dropping by for a cup of coffee or glass of wine.  Honestly, when I can focus on my friends problems and help them out, it makes me forget my own and feel much better.  I treasure the moments with my friends, when we can dish about everyday life and share a few laughs together.  Every Thursday, we power walking together.  We vent, cuss, laugh and have normal girl talk.  It restores our sanity! 🙂  

friends therapy

A parent of a child with special needs, relies on friends that stand with us!  They listen, understand and share together with us.  We can’t do it alone, and our friendships sustain and keep us strong.  That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism, Down syndrome, Speech and Occupational Therapy

Blog #121~10 Years of Autism

Blog #121~ 10 Years of Autism

Last Saturday, the Chicago White Sox gave a replica of the 2005 World Series Ring to all the fans. This was to commemorate the 10 year anniversary of the Sox winning the World Series.

This sure beats the heck out of any bobble head they’ve given out…

White Sox Ring

I slipped the heavy ring on, that Al brought home from the game. I thought back on the week that the White Sox won the American League Championship securing their spot in the World Series. That was the week, that we got the firm diagnosis that our son Nick, had autism. Nick is now 21 years old and has Down syndrome along with autism. A lot has happened in the last 10 years, and I’ve learned plenty in the process.

Sox  Nick and mom

What about the 11 years prior to the diagnosis of Nick having autism? Well, when he was 5 years old we had him tested but it was found that he was not on the autism spectrum because he was highly social and the oddities were due to having Sensory Integration Dysfunction.

According to the Sensory Processing Disorder Foundation (SPD Foundation), “Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”)

is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks.”

Nick sought out input by tapping objects, walking heavily and stimming with his toys to help organize his senses. His occupational therapist worked with him weekly providing him with a sensory diet.

photo (115)

In addition, Nick also has Verbal Apraxia of Speech (an acquired oral motor speech disorder affecting an individual’s ability to translate conscious speech plans into motor plans, which results in limited and difficult speech ability). The sensory and speech conditions blurred the lines, therefore the autism didn’t come to view at the time.

As Nick entered the throes of puberty, it became evident that there was more to his behaviors than just Down syndrome. That’s when we sought out Little Friends Center for Autism to do an assessment 10 years ago. Looking back I had a hunch he did. However, part of me wasn’t ready to face such a daunting diagnosis as autism. We got the report from Little Friends the day that the White Sox won the ALC championship. That report was the key to opening up a new world for us.

The official diagnosis of autism, allowed us to request more specific services for Nick. This included a better communication system, behavior plan, training, finding the NADS (National Association for Down Syndrome) support group for dual diagnosis families, and respite care through the state. With the help of Little Friends, I attended training sessions to help Nick foster independence and better communication. More importantly, I learned how to get my son toilet trained once and for all, and out of those Depends diapers.

Nick has grown a lot in the last 10 years. Things are not near perfect, nor will they ever be. We face our daily  battles. He is still stimming and raising autism awareness everywhere he goes. But the meltdowns are fewer and far between. Nick is happy and a funny guy. And when I see him standing there in his boxer briefs I am reminded of perhaps the greatest accomplishments in my life. I’m proud to say that we are done with what our autism community refers to as “Code Brown”

No more poop smears!

poop icon

If you are a parent and have a hunch that your child may have autism, this is my wish for you. That you go get an assessment, take that piece of paper and use it as your ticket to get the services to help your child.  Seeing where Nick is today is a sweet victory that I savor.  It feels like I’m winning the series in Nick’s world.  That’s what is in my noggin this week!

~Teresa 🙂