Posted in Adult Day Programs for Special Needs, Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Nick~Spring Update

Nick~Spring Update

dandelion two

At last, spring has arrived in Chicago.  Here’s what Nick has been up to this spring at his adult day program.  My son is 23 years old and has Down syndrome and autism.  Each day he engages in a variety of activities at this program.

Nick continues to have both in-house and community vocational jobs.  These include stocking shelves at a local food pantry, stuffing church bulletins and cleaning at GiGi’s playhouse.  He recently got a paid job in-house, crushing and recycling cans.

nick-vacumme-gigis

Other community activities in Nick’s day program include visits to the library, shopping, and local parks.  In house, the adult day program has many enrichment activities such as art, work bins, cooking, fitness, and gardening.  They have taken the carrot and broccoli pods which were started indoors this winter, and planted them outside.  His group also bought and spread mulch on the outdoor beds.

In cooking, they’ve made shepherds pie, fruit pizza, hot dogs & sloppy joes with fries, and biscuits with gravy.  They have so much fun playing bingo and having holiday theme parties.  For St. Patrick’s Day they made shamrock shakes, and for Cinco de Mayo they made burrito bowls.  Recently, the moms were invited to his room for a Mother’s Day tea.  Nick was very excited to have me visit.

Mother's Day Tea

Outside of Nick’s adult day program, he keeps busy with his respite workers.  He enjoys going to local parks,  the library, movie theatre and restaurants.  He’s a regular at Culvers and CiCi’s Pizza each week.  We are very fortunate to have such dedicated caregivers with Lara, Jodi and Kelsey, who he loves very much.

I’ve painted a pretty and serene picture of Nick’s world this spring.  But it’s not all dainty flowers and colorful rainbows.  There are quite a few dandelions scattered in the mix.

dandelions

He continues to challenge us all with undesirable behaviors, like button pushing, throwing objects, blowing snot rockets and wiping them all over the place along with a lot of tapping and stimming.

Nick got a hold of a gargantuan tapper to stim on last week 🙂

Nick gargantuan tapper

There have been some milk thistles popping into the picture as well.  Last week he managed to add to his tally of fire alarm pulls, getting one at his day program.  So the alarm count stands today at 44 pulls.  OUCH!

milk thistle

The mix of cold weather and rain has led to some serious cabin fever this spring.  Here’s to warmer weather and getting my “one man wrecking crew” outdoors.  I’m grateful that Nick has a wonderful day program to go to, along with awesome respite workers that he loves.  He has a fulfilling life, and I get some peaceful time to myself.   Cheers to an abundance of flowers this spring, with fewer thorns.

That’s what is in my noggin this week. 🙂

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

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

Mom,are you taking care of yourself?

Mom, are you taking care of yourself?

Pour Cup

Today, I took a page out of my own blog.  I took some extra time to do something that I love.  Last week I wrote about the importance of doing so.  Sometimes as moms, we are busy doing so much for others.  We don’t always carve out the time to put ourselves first.

In case you missed the blog last Monday, click below………

https://nickspecialneeds.com/?s=mom

It was a warm, sunny day and just perfect for planting.  Digging my hands is the soil was good for my soul.  Picking out the color palate of flowers and accents, along with some tomato plants is always so enjoyable to me.  It was a nice slice of peace and serenity that helped me to feel restored and energized. 🙂

flowers

I hope all of you moms had a wonderful Mother’s Day.  What are you going to take care of yourself this week?  Give yourself a decadent slice of something sweet that you enjoy, because YOU deserve it!  That’s what is in my noggin this week.

~Teresa 🙂

relax

Follow Nick :):

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Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

Posted in Parenting Special Needs

Blog #174~ Mom,Take Care of Yourself!

Blog #174~Mom, Take Care of Yourself!

A message to all of you moms out there in the trenches, up to your elbows in laundry, cooking, cleaning and wiping up snot, or changing countless dirty diapers…….

Pour Cup

Trying to be perfect and do everything yourself doesn’t work.  Sometimes the items you put on your to-do list get bumped to the next week or month.  Life gets in the way, especially if you are raising a child with special needs.  My son Nick is 23 years old, and has Down syndrome and autism.  There was a time when I would beat myself up.  I felt tremendous guilt about not doing enough for him, and the rest of my family.

The internal dialog was something like this…..

Nick’s not sitting up yet, I need to do more physical therapy exercises at home.   I shouldn’t be sticking in a Barney video all the time.  He should be potty trained by now, what am I doing wrong?  I don’t have enough time to spend with my older son.  There aren’t enough hours in the day to get things done around the house. 

This was the first lesson I learned.  Stop trying to be perfect and let go of the guilt….

There’s nothing wrong with having your own pity party every once in a while, along with a good cry.  But self-pity and guilt can eat away at your psyche and rob you of happiness.  It is at these junctures, that I learned to evaluate the challenges in front of me.  Prioritize what is urgent and act upon them.  The rest of the expectations, were often things that I put upon myself, causing more unwanted stress in my life.  Don’t get me wrong, the guilt still pops up on occasion.  But it doesn’t consume me anymore.

Which leads me to the second lesson I’ve learned…….

Make Time for Yourself

I’m no good to my family if I can’t let it go, and take care of myself.  What makes you happy?  Do it, get back to doing it!  Carve out niches whether it’s taking a walk outdoors, meeting a friend for coffee, reading a book, or getting back to a hobby you left behind once the kids were born.  Slow your pace during these times and savor the moments when you make time for yourself.

The third thing that I’ve learned, combines the two above.  It is the importance of finding balance…..

Balance

Life can be crazy with kids, running them around to therapy/doctor appointments, sports programs, and enrichment classes.  On top of those Uber duties, there is running a household and if you have a job outside the home, the pace can be non-stop.  A car can’t run from zero to sixty mph, without shutting off the engine and stopping to refuel.  What are you doing on your fuel stops?  When you turn that key and the motor stops, think about going to a place that gives you a simple pleasure.

On my pit stops, I tend to grab the remote to shut down, kick back and do nothing.  Sometimes it’s a binge watch of Fixer Upper on HGTV, other times it’s a show on The Bravo Channel (thank you Andy Cohen).  It’s a time to de-compress, relax and escape.  This “do nothing” time allows me to re-fuel.

As Mother’s Day approaches, my hope is for all moms to let go of the guilt, make time for yourself, and find balance and resist the urge to get everything doneTake care of yourself, you can’t pour from an empty cup!  When you find the balance, the happiness returns and there is more peace and fulfillment in your life as a mom.

That’s what is in my noggin this week. 🙂

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

Posted in Autism, Down syndrome, Education and Special Needs, IEP (Indivdualized Education Plan)

Blog #173~ IEP’s and Advocating for Your Child

Blog #173~ IEP’s and Advocating for Your Child

IEP-Picture

It’s the merry month of May, or IEP season for parents who have a child with special needs.  How do you advocate to get what your child is entitled to?  IEP stands for Individualized Education Plan. The IDEA law, ensures that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment and independent living.”

This purpose should drive the needs of your child, because it is neccessary for them to be prepared for further education, employment, and independent living”.  In the case of my son, Nick having Down syndrome and autism, he is unable to work and live independently.  However through the years, his IEP goals, and supports have focused on his abilities to do everything possible to work towards this purpose and what is realistic for him upon completion of school at age 22.

scan0016

So back to my first question….. How do you get what your child is entitled to?

There are three things that you can do as a parent to advocate for your child.  These include providing parent input, examine & evaluating your child’s current IEP, and building goals based upon your child’s strengths.

Parent input should include what you want to see your child doing towards the purpose of “preparing them for further education, employment and independent living”. 

*What academic goals can you put in place now that will drive them to be more independent in the future?

*How will your child interact with other peers and staff in social situations?

*How will your child do with social skills when out in public?

*What methods of communication will be used for your child to express themselves?

nick aac

The second way you can best advocate for your child is to evaluate their current IEP.  Take a hard look at each section including your child’s level of functioning, academic achievements, goals, special education & related services and accommodations.  The focus should be on what your child CAN do with measurable goals.  What supports and modifications are needed to assist your child?  Does your child need a visual schedule?  Is there any equipment or sensory related items that are needed to help with learning and navigating the building?  Will their be a shared or 1:1 aide provided for your child if they need additional support?

If your child is not making any progress on a goal, then it needs to be looked at.  For instance a goal of tying shoes may need more support and visuals from the occupational therapists.  Then again, is the goal of tying shoes going to be important in another 5 years, or can you make another accommodation, move on and work on a different goal?

shoelaces

Once you have re-evaluated your child’s current IEP, schedule a meeting with the support teacher/ case manager to review your findings and decide on what goals would be best for your child moving forward.  I would also suggest sending an email to the classroom teacher, therapists, and social worker to get their input on re-vamping the goals.  This should all be done at least a month before the scheduled IEP meeting.

Be sure and request the proposed draft of the new IEP, including all reports from each team members, along with the goals proposed for your review BEFORE the actual meeting.  This will insure that you are an informed member of the team, and be a vital part of the decision making process.

goals

Goals should always build upon their strengths.  My son was never interested in writing  Any marker or pen given to him ended up with scribbles all over his clothing and skin.  Nick was just not motivated by any goal to write.  But what he was really good at matching.  Many of his academic goals were driven by using supports that involved matching.  So instead of writing Nick, the support teacher made a worksheet where he would cut out the letters N-I-C-K and glue them under a template.  This allowed Nick to work on name recognition and cutting skills.  This is a great example of modifying the curriculum to suit the level of student functioning.

Another example is money handling skills.  Nick’s goal in elementary school was to work on the “dollar over” method.  If an item was $1.49, he would count out two dollars (one dollar + one more dollar for change back).

dollar bills

Later in high school, the goal was changed to using an ATM card (which is what most people use in society today).

Taking on the role of advocate for your child insures that they your child will get what they are entitled under the IDEA law.  Preparing yourself with vital parent input, examining & evaluating their current IEP, and working with the teacher to build goals that promote learning and independence will result in a solid education plan for your child, and their future success.  In closing I will add this last point, that your child’s IEP should be constructed on your child’s unique needs, and NOT what the school district says they can offer and afford.   That’s what is in my noggin this week.

~Teresa

IEP2

Follow Nick:

Facebook & Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall