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

Blog #176~ Special Needs Summer Recreation Programs

Blog #176~Special Needs Summer Recreation Programs

The heat is on!  Are you looking into programs for your child with special needs this summer?  There are many types of programs available including camps, athletic and leisure programs.  A great place to start is to contact your local park district to see if they offer any special recreation programs.  For programs in here in Illinois click on this link: http:// www.specialrecreation.org

Here are some links for special needs summer programs:

Special Olympics- http:// www.specialolympics.org

Buddy Up Tennis- http:// www.buddyuptennis.com

Top Soccer- http://www.topsoccer.us

I Can Ride Bike Camps- https://www.icanshine.org

Easter Seals- http://www.easterseals.com

Gi Gi’s Playhouse- https://www.gigisplayhouse.org

American Camp Association- https://acacamps.org

Very Well has a list of Inclusive Sports Programs- https://www.verywell.com/special-needs-sports-programs-3106922

Friendship Circle List of Camps- http://www.friendshipcircle.org/blog/2013/02/13/25-summer-camps-for-individuals-with-special-needs/

Diveheart Scuba program- http://diveheart.org

Diveheart 2013 336

My son Nick (pictured above), is 23 years old and has Down syndrome and autism.  He has participated in many of these programs over the years.  These include Special Olympics, Challenger Baseball League, Top Soccer, swim lessons, Diveheart and I Can Shine Bike Camp.  During the summer months he also attended ESY (Extended Summer Year) summer school.  These programs helped him to learn new skills, have a structured routine, and develop friendships.

Nick at ESY Summer School…..

 

I Can Shine Bike Camp….

photo (124)

Many of these programs are available for children with special needs throughout the U.S.  My son Nick had great experiences in participating in these programs.  If you know of a program you would like to share, please contact me.  I’m always updating my resource list on this website and sharing them with other support groups.  Here’s to a great summer 🙂

That’s what is in my noggin this week!

~Teresa 🙂

Follow Nick:

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Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

Posted in Autism, Doctors and Dentists, Down syndrome

Blog #175~ Dentist Visits for Special Needs

Blog #175~Dentist Visits for Special Needs

teeth emoji

Taking a child with special needs to the dentist can be challenging.  It ranks right up there with hair cuts and blood draws at the medical lab.  My son Nick is 23 years old, and has Down syndrome and autism.  His speech deficits and sensory issues makes it difficult to get a proper dental examination and cleaning.  Now that Nick is an adult, we changed from a pediatric dentist to one that specializes in working with adults with special needs.  The experience for my son went very well, and here’s why it was successful.

Here are 5 tips to help with dentist visits for special needs:

*1- Find a dentist who specializes in working with persons having special needs.  Get referrals from other families and therapists.

*2- Request to schedule the appointment during the quiet time at the office.

*3- Create a social story either with a written checklist or pictures for your child to follow.  For a child with autism, if they can see it, then they can understand it.  This guide will be like a map to follow, and can help to lessen anxiety.

I printed a social story from Google Images and added a highly preferred reward of Taco Bell at the end of the visit:

dentist social story

At home we have a tooth brushing sequence laminated for Nick to follow.  You can print this PDF out for your child to use:  teeth

*4- The dentist should take the time to go at your child’s pace, based on their sensitivity and level of anxiousness.  His new dentist allotted plenty of time to ease into the exam, and for Nick to get comfortable with him.  Nick didn’t want to sit in the chair right away, even with my point prompts to the social story.  First, they put one of his favorite cartoons on the flat screen TV.  Then, the dentist put his gloved hands out for Nick to touch and get use to the feel and texture.  After a few minutes along with a several high-five and elbow bumps, Nick sat down in the chair.  He continued to narrow the gap of proximity, so that Nick was could get use to him being close.

On the first visit, the dentist was able to do brief examination and brush Nick’s teeth counting to 23 (his age) twice.  He took several breaks, giving lots of praise and elbow bumps.  We scheduled another visit three weeks later to try to build Nick’s tolerance level and continue to develop their relationship.  On the second visit, he was more at ease, sitting down in the chair right away.  The dentist completed a deeper examination, as Nick was able to tolerate even more this time.  He was able to clean, floss and even brush fluoride on Nick’s teeth!

Nick dentist two

*5- The key to having success on these visits was allowing time for Nick to feel more relaxed and establishing trust.  The dentist worked slowly to desensitize, picking up on any verbal or non-verbal cues.  He adjusted his pace accordingly, to match what my son could handle.  His dentist understood the importance of building this trust and relationship, thus earning the right to provide more clinical care.

The tips of *1-finding the right dentist, *2-scheduling appointments during off times, *3-providing a social story, *4-breaking down the examination slowly and *5-establishing a trusting relationship, all helped greatly to lead to successful dentist visits.

If your child has sensitivities, you may also want to see if they can tour the office before the appointment.  If need be, ask if the lighting can be adjusted and whether they offer the use of a weighted vest (which provides deep pressure which can be calming).  In some cases, it may be necessary to sedate a child that is uncooperative or needs more advanced care.

At this time with my son, we will continue to build on the solid foundation we’ve begun with his new dentist without the use of sedation for as long as possible.  These baby steps helped to lessen Nick’s anxiety for dental visits in the future.  I appreciate the time, care and concern for my son’s best interests in providing such a positive experience.  That’s what is in my noggin this week. 🙂

~Teresa

Follow Nick:

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Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

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 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:

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Instagram #nickdsautism

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Posted in Autism, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism

Blog #172~ Autism:5 Ways You Can Help

Blog #172~ Autism: 5 Ways You Can Help

The aim of Autism Awareness Month this year, is to educate the public about autism.  How do you react when you see or meet a person that has autism?  Autism is a complex mental condition and developmental disability, characterized by difficulties in the way a person communicates and interacts with other people.  People with autism are classed as having Autism Spectrum Disorder (ASD) and the terms autism and ASD are often used interchangeably. A wide spectrum disorder, people will autism have set of symptoms unique to themselves; no two people are the same.

autism awareness 2016

My son Nick is 23 years old and has Down syndrome and autism.  As April comes to a close this week, I want to touch on autism awareness and acceptance.  Since the aim this month is to educate the public about autism,  I would like to challenge each of you to open your mind and heart to people having autism, along with their families and caregivers.

photo (26)

Here are 5 things you can do to show acceptance and support:

*Open your heart, give a smile to a family struggling out in public with a child who has autism.  If you are a praying person, say a prayer for compassion and tolerance.

*Reach out, pay a compliment or offer help, to a family who might be dealing with a difficult time with their child.  “You have a lovely family.” “You are a wonderful parent, I admire your patience.”  If you encounter a family going through a tough time, such as a meltdown, or if the child is shutting down, ask them “What can I do to help?”

*Be a friend, make a phone call to check in, set up a coffee or lunch date, or offer to help out with carpooling or running an errand.  Bring a bottle of wine or a Starbucks latte, over and chat.  Many parents may not get a chance to speak to other adults on a daily basis.

*Teach your child about inclusivity.  Invite a classmate with autism, to your child’s birthday party.  Show that they are genuinely welcome, even if their child can only tolerate a short time.  Look into inclusion opportunities for your child at school like lunch buddy or peer partner programs and volunteering for Special Olympics.  These are all ways to teach your child to be kind and compassionate.

It’s great to see that Sesame Street just added a new muppet, Julia who has autism!

Julia Sesame Street

*Stand up and advocate, if you overhear someone saying something inconsiderate about autism or any other disability, speak up!  Share about autism on your social media.

Awareness and acceptance means allowing yourself to be open, compassionate and kind.  Acceptance is not about tolerating others that are different from you.  It is about valuing our differences as human beings, and seeing the heart and strengths that lies in each of us.  That’s what is in my noggin as Autism Awareness Month wraps up this week.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @ #nickdsautism

Twitter @tjunnerstall

 

 

 

 

Posted in Autism, Dual Diagnosis Down syndrome and autism, Feeding, Personal Hygiene, Toileting

Blog #170~Teaching Independent Living Skills

Blog #170~Teaching Independent Living Skills

Brushing your teeth, bathing, dressing, and doing household chores, are all a part of what a parent teaches their child.  But what if you are a parent of a child with special needs?  How do you teach these independent living skills?

Nick vacumming_Tabor Hills (3)

My son Nick is 23 years old and has a dual diagnosis of Down syndrome and autism.  He has learned many self-help skills, and assists around the house with several chores.  These independent living skills give him a sense of accomplishment and pride.  It also takes the burden off me as his mom.

So how do you get started?  First, identify areas that you want to work on with your child.  Pick just one skill, that your child can do with assistance.  This skill should have value and interest to them.  Take for instance the task of washing your hands.  This was something my son liked to do because he enjoys running the faucets. 😉  The next step is to break down the task into simple steps.  Take these simple steps and determine what supports are needed to teach this skill.  For a child that has autism, it helps greatly to provide visual supports.  This can be written instructions, using picture sequences, or video modeling.

Picture sequence for washing hands….

handwashing routine

When using picture sequences, determine with your child’s teacher, if it’s more effective to use the style above, or actual photographs of the sequence.  Each child is different in how they can understand pictures. You can find many picture sequences on Google Images, or ask your child’s support teacher to make you some.  Another option is to use an iPad, and download apps that show these sequences.  There are tons apps available, here is just one of many:

iPad App called iDo Hygiene (free app)….

iDo hygiene

Once the visual supports are in place, you can guide your child step by step, using “hand over hand technique” to teach the motor skills.  As your child develops these skills, begin to fade back, by point prompting to each picture.  Be sure to use lots of praise and cheer them on their successes.

Here are a few examples of other self-help skills that you can work on with your child around the house:

*Hygiene skills like brushing teeth, showering, washing face and hands, brushing hair, toileting, shaving.

*Recycling and can crushing

*Shredding

*Help with laundry

Nick laundry

*Unload the dishwasher

*Set the table

*Make the bed

*Fold and put away laundry

*Water plants

Nick watering plants

*Cleaning windows and countertops

*Dusting

*Unload groceries and put them away

Nick toilet paper

*Cooking

*Vacuuming

Many of these household chores provide great sensory input.  Push and pull activities like carrying laundry baskets and vacuuming, are excellent examples.  Heavy work provides proprioceptive input to the muscles & joints.  This can be very calming, organizing, and regulating, decreasing stress and anxiety.

Not all of the skills above are Nick’s favorites to do.  As a parent,  you can determine which activities are more motivating for your child.  Focus on those first.  Nick really enjoys vacuuming.  Another strength Nick has is matching, and remembering where things go.  So for him, unloading the dishwasher and putting groceries away were both easier and motivating for him to do.

Teaching your child independent living skills, will strengthen their abilities to hold a job in the future.

Nick doing volunteer work at GiGi’s Playhouse…

nick-cleaning-gigis

It also fosters a sense of fulfillment and gratification for them, as well.  So, pick one task, roll up your sleeves and get to work. That’s what is in my noggin this week!

~Teresa 🙂

Follow Nick:

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Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

Posted in Autism, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism

Blog #169~ I’m Very Aware of Autism and More

Blog #169~ I’m Very Aware of Autism and More

autism ribbon

April is “Autism Awareness Month” – a time to promote awareness, acceptance and attention to those people who are diagnosed as being on the autism spectrum.

Yes, I’m very aware of autism, and more.  So is anyone, who has been around my son.  Nick is 23 years old, and has dual diagnosis of Down syndrome and autism, (DS-ASD).  He does a good job spreading awareness wherever he goes. 🙂  Honestly, it’s hard for me to get on board with the “Light it Up Blue” campaign.  Why is that?  Because my son doesn’t fit in with any of the support groups for autism, due to his is lack of speech, cognitive and developmental delays.

“Autism or Autism Spectrum Disorder (ASD), is a serious neurodevelopmental disorder that impairs a child’s ability to communicate and interact with others. It also includes restricted repetitive behaviors, interests and activities. These issues cause significant impairment in social, occupational and other areas of functioning.”

autism awareness 2016

Since my son has a dual diagnosis of DS-ASD, I’m going to put my focus on this area.  According to The National Down Syndrome Society (NDSS) http://www.ndss.org:

“Children who have ASD may or may not exhibit all of these characteristics at any one time nor will they consistently demonstrate their abilities across similar circumstances. Some of the variable characteristics of ASD we have commonly observed in children with DS-ASD include:

  • Unusual response to sensations (especially sounds, lights, touch or pain)
  • Food refusal (preferred textures or tastes)
  • Unusual play with toys and other objects
  • Difficulty with changes in routine or familiar surroundings
  • Little or no meaningful communication
  • Disruptive behaviors (aggression, throwing tantrums, or extreme non-compliance)
  • Hyperactivity, short attention, and impulsivity
  • Self-injurious behavior (skin picking, head hitting or banging, eye-poking, or biting)
  • Sleep disturbances
  • History of developmental regression (esp. language and social skills)”

NDSS_logo

My son Nick, certainly hits most of the bullet points listed above.  It’s a unique mix having a child with a dual diagnosis of DS-ASD.  For many years, I felt isolated from the local DS support group because my child had many of those characteristics.  Eventually, I was put in contact with a small group of parents that also had children with DS-ASD.  This was a group within The National Association for Down Syndrome (NADS), here is Chicago.  Finding this group, made all the difference.  These parents were in the same boat, sharing similar experiences, struggles, and yes funny stories, that I could relate to.  In addition to local support groups, there are many online groups for DS-ASD on Facebook.

photo (26)

During Autism Awareness Month, I would like to see the government and media focus   on more educational, behavioral supports and other treatment options.  What is going to happen to our kids when they age out of the school system?  There aren’t near enough employment opportunities, day programs or group homes for this rapidly growing population.  In addition, I’d like there to be an easier path to obtain funding through the government.

understanding

For the month of April, parents of a child with autism, or a dual diagnosis of DS-ASD, need understanding and support. Do you know a parent with a child who has autism?  Consider lending someone a hand, so they can run an errand.   We also need more compassion, and less judgment when we are out in public with our child.   And many of us, could use a good night’s sleep.

autism and sleep cartoon

You can also help by sharing information and stories, to raise awareness on social media. A better informed public will be more empathetic and supportive towards people with autism and a dual diagnosis of Down syndrome and autism.

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, Autism Safety and Wandering, Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Resources for Special Needs

Blog #168~ New Disability Identification Card

Blog #168~ New Disability Identification Card

This morning, I attended an event presented by Illinois State Representative, Stephanie Kifowit at the Aurora Police Department.   Last year, she sponsored legislation to create a disability awareness card.  Many individuals in our community live with special needs.  Often, their conditions can sometimes make it difficult to communicate in stressful situations.  This new disability wallet card was unveiled to foster better communication for individuals who struggle during these times.

State Representative Stephanie Kifowit….

FullSizeRender

This initiative was the idea of School Board President Lori Price, who is a parent of a child with Autism Spectrum Disorder. Persons with autism spectrum disorder and other disabilities may shut down, get nervous, panic or display inappropriate behaviors during high stress situations.  The disability awareness card is a tool, to help individuals quickly identify themselves to first responders and other public figures.   An individual can quickly show this wallet card, which will help to prevent a situation from escalating.

Face it, we all get nervous when being pulled over by a police officer.  Imagine what it must feel like for a person medically diagnosed with an intellectual, developmental or mental disability. This wallet card is different from the state ID card, as it contains the following…..

On this card, these conditions may present a person who:

*Appears deaf or unable to understand

*Has difficulty speaking or communicating

*Engages in repetitive or self-stimulating behaviors such as rocking or hand flapping.  

*Becomes agitated due to physical contact or stressful situations

*Acts indifferent or unresponsive

These conditions are stated on the card along with this statement:

“Please do not interpret my behavior as refusal to cooperate.  To better communicate with me, it can be helpful to speak slowly and clearly, repeat questions and allow time for responses.”

“If those techniques are unsuccessful, I request that you contact the person noted below on my behalf as he/she will confirm my diagnosis and provide information you may need about my identity or condition.”

These cards are free to individuals who have been approved by the Secretary of State’s office for an Illinois Person with a Disability ID card.  

For an application click here @https://www.cyberdriveillinois.com

I applaud State Representative Stephanie Kifowit for taking Lori Price’s idea for this simple card, that will improve communication and help de-escalate high stress situations.  This will assist law enforcement and first responders in keeping our loved ones safe.  Readers , please let me know if an identification card like this has been implemented, where you live.  If not, perhaps it’s time to champion this effort!

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

~Teresa

Who’s getting funky on World Down Syndrome Day, 3/21?

Deadline for ordering your funky socks for World Down Syndrome Day is this Thursday.  Support our campaign to help The National Association for Down Syndrome and our local homeless shelter by ordering and rocking your socks on, 3/21!  Click here to order: https://my.wehelptwo.com/campaign?reset=1&id=373

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

Blog #166~ Lessons Learned on a Ski Slope

vail

Blog #166~ Lessons Learned on a Ski Slope

After a 27 year hiatus, I recently went on a ski trip to Vail, Colorado.  My older son, Hank had never skied before so we opted to take a lesson together.  Our instructor Brad, offered up many useful tips to help us navigate the slopes. Many of the things that Brad pointed out, can apply to raising a child with special needs.  My younger son, Nick is 22, and has Down syndrome and autism.  The daily challenges can weigh a parent down both physically and mentally.  That’s were the lessons I learned on a ski slope come in.

Lessons Learned on a Ski Slope…….

*If you point your ski’s too far uphill you are going to roll down…..

Over the years I’ve set goals for my son, Nick.  Many of these were aimed too high.  As a result, my expectations were not realistic, and Nick fell further back than I anticipated.  For example, during his elementary years Nick had a handwriting goal.  I was determined that he would be able to write his name and pushed hard for several year to keep it in his IEP.  This goal was my dream, but not Nick’s reality.  A pen or marker in Nick’s hands equals scribbling all over his skin and clothes.  I learned that you have to adjust your child’s goals to what is reasonable and attainable for them, and not for yourself.

*Don’t Fred Flintstone your feet…..

When you ski it’s important to shift the weight on your feet and apply the pressure at different points in order to make the turns.  If you dig in and “Fred Flintstone” your feet, the skiing becomes rigid and doesn’t glide naturally.  There has to be room for some give and take, when working with a child with special needs. It’s unfair to put pressure on your child to do everything you want, in a given day.  Sometimes you have to let that foot up and allow them to have room to understand, process, and do things in their own time. Take your foot off the brakes, otherwise, things will break down for your child.

fred-flintstone-feet

*Learn how to stop correctly…….

The day before our ski lesson, my son Hank went out with his Dad, Al, to try out skiing.  He came home very tired, cranky and discouraged due to going to fast, falling, and struggling to get back up.  During the ski lesson, he learned how to maneuver his body, and the proper ways to stop.  Afterwards, Hank had much more confidence and felt success.  If you push your child with special needs to do too much, they become frustrated as Hank did. This can lead to a risk of sensory  overload and potential meltdowns.  Recognize those signs of distress, and stop the activity before your child reaches a boiling point.

Hank and I with our ski instructor, Brad…..

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*Relax and take in the scenery….

On the ski lift, our instructor Brad, encouraged me to put my ski’s up on the foot rest and relax.  He could sense that I was nervous about leaving the comfort of the bunny slope.  He reminded me to breathe, look around, and take in the beautiful scenery.  I think the same can be true in life with a child who has special needs.  The seamless schedule of doctor and therapy appointments, along with the pressure of working with them at home can get to be too much.   Nick had very low muscle tone, which is a trait of having Down syndrome.  I was constantly providing stimulating activities and exercises to get him stronger so he could roll over, crawl, sit up and walk.  Beyond gross motor skills, there was work to be done with feeding, speech and fine motor skills. The guilt of not feeling like you are doing enough for your child can burden a parent even more.  At some point, you have to just relax and not beat yourself up.  Take a breath and enjoy the beauty of your child for who they are.

My son, Nick……

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Skiing like many other sports offer lessons for us to learn in our lives.  That day on the slopes,  I was reminded about the importance of being flexible in what I expect from my son with Down syndrome and autism.  On the eve of his 23rd birthday, I reflect back on how far Nick has come.  I going to take a moment and breathe.  Like the backdrop of the blue sky against the snow covered Rocky Mountains,  I just want to take that in.  🙂 

That’s what is in my noggin this week.

~Teresa

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Wishing both Nick and his Dad, Al a very Happy Birthday this week ……

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

Blog #165~ Betty White on Staying Positive

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Blog #165~ Betty White on Staying Positive

Betty White turned 95 last week, and beams with happiness and positivity!  She was interviewed by Katie Couric, who asked this American treasure, about the state of our country, and how divided it is.

Here is what Betty had to say……

“It’s not in the best place we’ve ever been, but I think that’s the time, to buckle down and really work positively as much as you can. Instead of saying, Oh this is terrible, oh he’s terrible, just think alright, there is nothing I can do about that right now. But I can do the best in my little circle.  So if I do that, maybe you’ll do your best, and we’ll get through.”

Katie Couric went on to state how hard it is for some people to be positive, with so much negativity with the barrage of politics and social media creating a toxic environment.  Betty, acknowledged this, and offered these thoughts…….  

So many people think negatively saying, you know what I hate, oh I hate this.  Instead of alright, I’ll get through this.  Then you start lifting up a bit.”

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“If you start with, you know what I hate, you’re going to go right down the tubes” 

Betty White is a positive thinker, in her words a “cockeyed optimist” and attributes that to staying happy all 95 years of her life.  I thought about this interview, when the sun came out after countless foggy, gray days here in Chicago.  I took a power walk soaking in the sunny, blue skies and mild 55 degree day.  I could feel the sunshine lifting my spirits.  Not everyday starts with sunshine, especially in January.  But my day ALWAYS start with a smile, (and usually a fart and giggle), from my son, Nick.  He is 22 years old and has Down syndrome and autism.

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It’s a great way to start each day.🙂  Nick’s smile is contagious, his attitude uplifting.  Anyone in Nick’s inner circle has witnessed his joy.  A treat at Culver’s brings on such happiness to big guy.  Nick does well finding pleasure in the simple things, being silly, and making people laugh. Yes, he has his moments of getting frustrated and upset like the rest of us.  But he shakes it off, never holding a grudge or negativity.

Betty White and my son, Nick, have the right idea by entering each day with a positive attitude.  It will not only elevate your mood, but those around you.

It’s no wonder why Betty White looks and feels these way she does at age 95, with her words of wisdom…….. *Buckle down  *Think positive  *Do the best in your little circle *You got to get through this, one foot in front of the other.  

Let the sunshine come out in your heart and beam onto others. Your positive spirit will ripple out of your own circle and expand to those around you. That’s what is in my noggin this week. 🙂

~Teresa

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