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 🙂

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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

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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

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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

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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:

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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

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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:

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Instagram @ #nickdsautism

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Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism

Blog #171~Rocking the Socks, and Helping Twice

Blog #171~Rocking the Socks, and Helping Twice

wehelptwo

The first part of rocking the funky socks campaign was to promote awareness on World Down Syndrome Day (WDSD), held each year on 3/21. The second part was for every pack that we sold, We Help Two donated a pair of warm, thermal socks which we donated to a local homeless shelter in our community.

My son Nick is 23 years old and has Down syndrome and autism.  The sock campaign raised $500.00 which we donated to Chicago based, The National Association for Down Syndrome, (NADS) http://www.nads.org.

world-down-syndrome-day

Last week, we took a full box of 59 pair of thermal socks donated by We Help Two, over to the Hesed House in Aurora, IL.  We Help Two partners with schools, organizations, individuals and non-profits to make twice the difference.

Nick Hessed House 2

 “The Hesed House is the second largest shelter in the State of Illinois, and the largest shelter outside of the city of Chicago. With the help of professional staff, alliances with outside agencies and 6,000 volunteers from 70 area churches, almost one thousand individuals (including 188 children) are served each year through Hesed House’s shelter and three housing programs. Hesed House sees 16 newly homeless individuals each week – that’s one new homeless individual every 8 1/2 hours. Hesed House strives to get 16 or 17 individuals out of homelessness each week.” 

hesed house logo

The Hesed House is not just a homeless shelter.  Besides providing shelter and supportive living, they also have employment training and education, along with medical assistance, counseling for substance abuse and mental illness, and offer state legal services.

Nick and I were pleased to pay it forward, with the donation of new thermal socks to Hesed House, courtesy of We Help Two.  For more information visit their website at http://www.wehelptwo.com.

Nick and Mom at Hessed House 2

A special thank you to Bethany from We Help Two, for reaching out to us for WDSD, to host a “Rock the Socks” campaign.  We Help Two is making a difference!   We were very happy to partner with them. Nick and I want to thank everyone who purchased and rocked the funky socks, and helped us make twice the difference.  That’s what is in my noggin this week! 🙂

~Teresa

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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

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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.

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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.

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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