Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick

Mother’s Day Break

Mother's Day

Mother’s Day Break

I hope that everyone had a wonderful Mother’s Day.  This week, I am giving myself a break on posting a blog.  My son Nick, has Down syndrome and autism and is 22 years old.  He is doing great in his adult day program.  Well, except for one thing. Yes, the spell has been broken.  But, he did manage to make it 3 full months without pulling a fire alarm.

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Current fire alarm pull count=35 pulls since third grade

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It’s Nick’s world, the rest of us are just trying to keep up!  That’s what is in my noggin this week.

~Teresa

Follow Nick:  (See what he’s doing with a mallet)

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Posted in Autism, Behavior/ ABA, Down syndrome

Blog #94~Advice for Special Needs Moms

Blog #94~Advice for Special Needs Moms

I’ve been raising a child with special needs for 20 years. My son, Nick has Down syndrome and was later diagnosed with autism. Being a parent is rewarding but also challenging and stressful. Having a child with special needs amplifies things even more. I’ve felt ashamed, exhausted, and frustrated piling on mounds of guilt along the way.  With Mother’s Day coming up I’ve been thinking about a few things. What advice would I give to that 33 year old mom back in 1994?

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Advice for Special Needs Moms- 5 Things I’ve learned

1.  Let go of being the helpless victim. Take back control and commit  yourself to action. Ask for help and accept help from family, friends, teachers, therapists, support groups and special needs agencies.

2.  Adopt a new attitude when you feel bogged down.  How about this mantra? “Today I will do just one thing to move me forward to where I want to be.”

3.  Learn from others but set your own course. It’s easy to be overwhelmed when you see other moms trying gluten free, casein free, organic dietary programs, experimenting with essential oils, driving all over town to ABA behavior/OT/PT/Speech therapy programs and recreational activities. Forgive yourself, let go of those feelings of inadequacy.

4.  Which leads right into GUILT!  Society’s expectations don’t have to be yours. Don’t let anyone pack your bags for a guilt trip.

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5.  Take time to breathe, pray, meditate, exercise and feed your soul. A rested mind, body and spirit will help you navigate those rough, rocky roads.

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Do I follow this advice every day? Hardly, this morning I procrastinated  waiting until Nick ran out of his meds before making  a doctor appointment. I also threw out a package of moldy hot dog buns buried in the pantry. The floor hasn’t been mopped in two weeks and I sat around like a slug watching this movie for the umpteenth time with Nick yesterday….

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Do I feel guilty about it? Not near as much as I use to. The mounds of guilt have been reduced to a few, small piles I step in from time to time.

So, to all the special needs moms out there I wish you a Happy Mother’s Day. Slow down and do something you enjoy.  Go have a glass of wine with your girlfriends. Take a day or at least an afternoon to do nothing but fun things you enjoy. Please carry that with you each day as you make your way down that rocky road. That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #54~Mom Helpline

Blog #54~Mom Helpline

What did I want for Mother’s Day?  ……………………. Just the sound of crickets.…..

I applaud the moms who enjoy breakfast in bed served by their kids.  I am not there anymore.  Really all I want is a little peace.  For me, it is having the luxury to take some time to do simple errands. Not rushing at a mad pace. It’s a gift just knowing that someone is watching Nick so I don’t have to bust my ass to get home.   And so I did.  I took my time after teaching two spin classes. I drove out of work slowly taking a chill pace towards Oswego.  I  stopped off at Ulta, Kohls, Target.  Oh how I love you three amigos!  Ladies, you are with me here, right? 🙂

So I got my wish, to breathe, stretch my arms out and enjoy doing what I like.  I also received a nice handmade gift from Nick.

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It lasted less than a day hanging on the shepherds hook.  A menacing squirrel plucked it off and darted across the yard holding it in his mouth.  Al got my favorites,  Yankee Candles and a new fountain for the deck.  That’s how I get my Zen on.

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While Nick showers me with little kisses, his older brother is more understated. Hank quietly posted a message on Facebook, “Happy Mother’s Day, Madre!  You’re the best.”

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Later he emerged out of the shower clean shaven and said, “This is your mother’s day gift.”  He knows exactly how to win his Madre’s heart.

While I was out driving yesterday and I pondered on what to write about for this week.  How is being a mom of a child with special needs different?  The images of my all my fellow warrior moms came to mind.  The path we were given is worn with sleeplessness that extends for years.  The basic milestones like eating solid foods, walking, talking, and potty training take longer to reach.  Some of these may never be met. The ones that do get met are sweet and savory.  Warrior moms become experts on their child’s diagnosis and IEP’s (Individualized Education Plans.)  They learn a whole new vocabulary of words from doctors, educators, speech, occupational and physical therapists.  They juggle schedules to all of these therapies and carve out time to attend conferences and seminars to learn more about how to improve the quality of life for their child. They become advocates for their child and help others who follow behind them.  Those with children who have behavior problems have to shift gears during a mid laundry fold and clean up a splatter or cut a meltdown off at the pass.

This is just one of many things Nick has dumped out.  For the full list check out Blog #3~Getting Your Goat, located in the April 2012 Archives!

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Sometimes the meltdowns just happen and the warrior mom has to maintain patience while their child is hitting, biting, pinching, kicking and destroying everything in their path.  It’s not all doom and gloom.  Having a son like Nick who has Down syndrome and autism can also bring sweetness, innocence and unconditional love.  That is what keeps me fueled as I take a breath and get ready for another day.

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What can you do to help a mom with a child who has special needs?  It means a great deal when I get a message, text or card.  Knowing that someone is thinking about you can really make a person’s day.  Offer to babysit or help a mom find respite care. “The Care.Com Team” provides a list of caregivers who have experience working with special needs children. Watch for signs that a family is becoming to isolated.  Sometimes being in the trenches, we might not realize how bad things have gotten. During the height of Nick’s puberty period, my in-laws (Jim and Theresa) saw that we were in over our heads. They found some resources and parents to help us find a new path for dealing with the difficult problems we were having.  Reaching out and finding support is essential.   This can be through a local group like NADS (National Association for Down Syndrome).  There are many groups online and through Facebook that I have found to be helpful such as “MyAutismTeam,” “Circle of Moms,” and “Mom2Mom” which has a hotline 1-877-914-Mom2.  There are many more listed under my resource page.

Today there is no school so I wasn’t sure how well I would be able to concentrate to do this piece. Nick was up earlier playing his iPod loudly and pushing buttons as I tried to sleep with one eye open. Over an hour later he crawled in bed next to me.  Surprisingly, he is taking a page out of his brother’s book, still sleeping in now. 🙂

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It’s 11:00am and all I hear is the dull hum of the refrigerator and the sound of my fingers tapping on the keyboard.  No iPod or Thomas the Tank Engine blaring, no water faucets running full blast, no phone intercom or microwave buttons being pushed.  Just crickets…………

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Cheers to all you moms out there and may your Mother’s Day wishes come true. That’s what is in my noggin this week.

~Teresa