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

Blog #207~Special Needs Parents: Coping When Life Gets Tough

 a Blog #207~Special Needs Parents: Coping When Life Gets Tough

Let’s face it, being a parent is exhausting at times.  When you have a child with special needs, it’s amplified.  Sometimes you just can’t catch a break.  You have to walk on eggshells, and keep your cool, so your child doesn’t have a meltdown.  The physical needs your child may have can take its toll, zapping your energy levels each day and night.  Autism and sleep disorders go hand in hand. Endless nights of interrupted sleep will beat you down.  My son Nick is 24 years old, and has Down syndrome and autism.  I’ve got many years under my belt, of taking care of his needs.  I can hold it together pretty well and keep my patience in tact.  Believe me, Nick does try my patience daily.  But every once in a while it gets to be too much, especially when sleep is disrupted.

mombie

So how do you find ways to catch a break and re-charge?  I thought a lot about this over the weekend.  There are times in life where you start to get your footing, but the next thing you know, a few more hurdles block your path.  In the worst of times, when my son was going through puberty and having multitudes of meltdowns, I questioned how I was going to survive.

I repeated this mantra to myself……

winston churhill quote

Here are 7 things to keep in mind which will help when you feel stressed out…..

  1. It’s totally NORMAL to feel overwhelmed.
  2. When you do feel stressed out, seek BALANCE and prioritize what MUST be done and what can wait.
  3. Stop feeling GUILTY.
  4. Give yourself a BREAK, even if it’s a mini break to keep you at your best both emotionally and physically.
  5. Ask for HELP from family, sitters and respite caregivers. You can’t do it alone.  Delegate household chores to all family members.
  6. CONNECT with support groups who better understand what you are dealing with on a daily basis.  Being a parent of a child with special needs can be lonely.  But you know what, you are NOT ALONE.
  7. Keep GRATITUDE in your heart.  Every day look for the blessings.  The good stuff will keep your focus positive.

This weekend was very busy, and my usual Saturday catch up routine was interrupted.  That evening I was looking for a clean pair of underwear for my son.  I dug through 3 clean laundry baskets that had yet to be put away.  Not one single pair could be found.  It was late, I was tired, and it was all too much.  While Nick was in the shower, I went into the closet and started yelling, “T, you suck.”  And yes, the swear words were flying.  Nick ended up in a pair of his Dad’s boxer briefs that were on the baggy side.  I spoke into the Amazon Echo, “Alexa, put F-ing underwear on the shopping list!”  Alexa acknowledged the request, without using the expletive, as she is polite that way.

The next day, Nick went to brunch with Kelsey, his respite caregiver.  I took my own advice, and put myself first.  I also took a moment to be grateful that Nick was fully toilet trained (no easy feat), and able to wear underwear.  Before making a Wal-Mart run for groceries and F-ing underwear, I headed over to my happy place, DSW Shoes. I was loaded down with preferred customer coupons and a gift card that I got for Mother’s Day.  It was only a twenty-minute mini break, but it did me a world of good!  Oh and I came out treating myself with two new pair of cute sandals. 🙂

Being a parent of a child with special needs carries a unique set of responsibilities that can be overwhelming.  Know that you are not alone, and that it’s essential to give yourself a break without guilt.  Even in the darkest days and nights, things will get better.

So I leave you with this final mantra when you are taking on what seems to be the impossible…..

breathe chapter quote

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

~Teresa

Follow Nick:

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Posted in Autism, Behavior/ ABA, Down syndrome

Blog #122~Parent Stress and Autism

Blog #122~ Parent Stress and Autism

Research has clearly shown that mothers of children with autism experience more stress, depression and poorer health than is typical of mothers in general. Autism Research Review (ARRI) reports this editorial, “Parental Stress in Autism Spectrum Disorders: In a survey of 219 parents of children with autism, Sharpley, et al. (1997), found that more than 80% reported sometimes being “stretched beyond their limits,” with mothers reporting higher stress levels than fathers.   The authors commented that the three most stressful factors are “(a) concern over the permanency of the condition; (b) poor acceptance of autistic behaviors by society and, often, by other family members; and (c) the very low levels of social support received by parents.”

I know of this stress too well. My son, Nick is 21 years old and has Down syndrome and autism. His impulsivity is at an all-time high. In the 5 minutes I stepped out to roll the garbage bins to the curb, he cleared out a desk drawer and threw the contents all over place. A few days before, he was up at 4am and proceeded to take two bottles of salad dressing and dump them all over the kitchen and laundry room floors.

At least he put the empty bottles in the recycle bin 🙂

dressing

According to an article written in Disability Scoop (www.disabilityscoop.com):

“Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, new research finds. These moms also spend significantly more time caregiving than moms of those without disabilities.

Researchers followed a group of moms of adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days researchers measured the moms’ hormone levels to assess their stress.

They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.

Such hormone levels have been associated with chronic health problems and can affect glucose regulation, immune functioning and mental activity, researchers say.

autism war girl

Now, I would never compare my level of stress to that of a combat soldier. But I do have to remain on point to keep up with Nick. I must jump out of my skin dozens of times a day when he pushes the ADT keypad, microwave, garbage disposal, and phone intercom buttons, runs upstairs to run the faucets full blast, or empties a full basket of folded laundry and the basket off the second floor.  Mix in sleep deprivation and dodging potential meltdowns situations, topped with a constant barrage of stimming sounds all of which send tension levels skyrocketing.

autism and sleep cartoon

The stress of parenting a child with autism is high for many reasons. Parents cope with grief, worries about the future, struggling to find resources and support for their child on top of handling the behavior and communication issues associated with having autism.

A child with autism may display unpredictable and disruptive behaviors have meltdowns that can be of danger to themselves and others and have trouble sleeping through the night. Deficits in speech and communication can contribute to behavior problems as well. In addition, parents may be dealing with seizure disorders related to autism.

A child’s autism diagnosis affects every member of the family in different ways. Parents must now place their primary focus on helping their child with autism. This may put pressure on their marriage, other children, work, finances, and personal relationships and responsibilities. Much of the focus shifts to finding resources and spending money towards treatment and interventions for their child. These needs can complicate family relationships, especially with siblings.

So what coping mechanisms help a parent dealing with anxiety and drained of energy?

*Get involved with support groups locally and online

*Obtain respite care and apply for funding for supportive services.

*Get your child/young adult into programs and social groups specifically tailored to autism.

*Carve out time to enjoy leisure activities like exercise, massage, meditation and self-relaxation techniques.

These can go a long way towards improving mental health and reduce the strain caused daily. While I try and do most of things, there are some days that push me close to the edge. Ask any parent raising a child with autism and they will tell you that some days you just can’t combat the stress.  That’s what is in my noggin (and heart) this week.

~Teresa

 

Posted in Autism, Behavior/ ABA, Down syndrome

Autism and Meltdowns

meltdown

Autism and Meltdowns

April is Autism Awareness Month.  This week I want to focus on autism and meltdowns.  Here is a not so pretty portrait of one of Nick’s meltdowns that I have deconstructed for you.  Nick at the time was 19 years old.  He has Down syndrome and autism.  This will give you an idea of the triggers and behaviors that can occur during a meltdown.  It will also show you what I learned to try and prevent this in the future.

Click here to read @ https://nickspecialneeds.wordpress.com/2013/12/09/blog-77autism-and-meltdowns/

That’s what is in my noggin this week.  Thank you for reading and sharing the reality of autism.

~Teresa

 

Posted in Autism, Down syndrome, Education and Special Needs

Blog #101~Teaching Nick 101

Blog #101~ Teaching Nick 101

This week is a perspective written by one of Nick’s middle school teachers, Jessica Martin. She taught Nick during the throes of puberty when his meltdowns were at an all-time high. Nick has Down syndrome and autism and struggles with speech.  He gets frustrated trying to communicate and  understanding the concept of change.

Here’s what his middle school teacher, Jessica Martin had to say about big guy:

It’s hard to believe that the first time I met Nick the year was 2007.  It seems just like yesterday when he walked into my classroom.  When Nick first came to me, he had episodes of self injurious and aggressive behaviors.  He also didn’t like to work much.  I collaborated with his mom who gave me the okay to use pop as a reward for Nick. I started small and used a token board with three squares spelling out the word “pop”.  If he did a work, he got a letter. This process continued until he completed three works with appropriate behaviors and got all three squares which spelled POP!!!!!!!  And omg did he get excited! He would announce in a high pitched excited voice, mocking me, “Nick goooot popppppp!” He would take his little cup that was no bigger than a medicine cup and tip it back, chucking that single gulp as if he had gone days without a drink, slam it down and give us all thumbs up! By the end of the year, he tolerated longer work periods.  We doubled his work time to 6 squares on the token board and changed it from “Pop” to the word “Sprite”.

sprite can

His work refusal behavior was eliminated 🙂 Yipieeee!  There were still small, occasional outbursts here and there but with his mom’s help, we created some amazing social stories to alleviate his stressors. By 2008, Nick was extremely popular in our school. He worked as garbage duty through multiple wings of the school, was happy and was beginning to talk more. His abilities and growth made me so proud.

When Nick finished middle school, I became his respite worker. There are so many hilarious stories too. Oh my gosh, the Taco Bell story comes to mind.   I took Nick to the mall one day. We would go on the weekends to shop around and then get lunch. (Taco bell of course.)

taco bell

I got him to tolerate shopping at the mall for over an hour, (which included lots of shoe stores and Nick trying on display high heels).  As a reward, we headed over to get our tacos and bean burritos.   Proudly, Nick walked with me down the stairs to the food court, looking as if he were on a mission and walked towards the glorious Taco Bell stand.

taco bell dog

We turn the corner and my heart literally froze. The stand was walled up and under construction. Now, 5 years ago, this would have caused a huge scene. Nick stopped, dead in his tracks, looked at the construction sign, fingers curling into little fists and all of the sudden, he yelled as loud as he could, DAMNIT!!!!  He then stomped his foot and we walked away. He handled it so appropriately! Should he have sworn? Probably not, but, I was screaming it in my head so I didn’t correct it! We drove to the nearest taco bell and chowed down on processed beans! Phew!

He’s in the zone…….

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I have seen so much growth in Nick. He surprises me every day. I love him with all of my heart. My big guy! 🙂 ~Jessica Martin

Nick and Jess…..

IMG_0104

I love hearing the perspectives of others who have worked with or been around Nick. It gives me clarity to the fact that he does make progress in his learning and behavior. And he is loved and adored in the process. Special thanks to Jessica Martin for sharing her experiences with Nick.  That’s what is in my noggin this week. 🙂

~Teresa

Posted in Autism, Down syndrome, Fun Side of Nick, Recreation/Leisure and Special Needs

Summer Vacation Update

Summer Vacation Update 

We are back from a two week vacation break.  It’s never certain how a person with a dual diagnosis of Down syndrome and autism will do with changes in schedule and venues.  Here’s what we’ve been up to………

Nick enjoyed going out with his respite worker, Lara to Blackberry Farm.  While on a ride, filled with little kids they hit a big bump.  Nick blurted out a loud expletive.  Let’s just say the little ones might have learned a new word they shouldn’t have.  Uncle Thomas came up from Texas for a visit.  It was fun to share laughs together and grill on the deck.  Nick showed his Uncle how he likes to play musical chairs.  Every time someone would get up, Nick would grab all his tappers and stims and steal their spot. He’d laugh flashing that devilish grin of his.

nick and tappers

The second week, we took a road trip to attend a family reunion.  Our route down took us thru St. Louis……

St. Louis Arch

We arrived at our destination 11 hours later at Lee’s Resort in Grove, Oklahoma….

cabins

Nick did really well in the car.  You just have to tune out the sound of the tennis balls tapping incessantly and watch out for flying toys and objects coming from the back seat.

Nick tapping on my shoulder on the road trip 🙂 “Wake up Mom!”

Nick tapping shoulder

It was so much fun to be with the family.  On Friday, we rented a pontoon boat. His Grandma, cousins, aunt and uncles had blast tubing and he loved riding fast in the boat.  Nick was doing great until we had trouble getting the anchor to stay put. We were ready to relax and float in the lake for a bit.  After several failed attempts in three different areas, Nick began to get upset and agitated.  Poor guy, he didn’t know what was going on.  Finally, we found an abandoned dock and tied up to it.  It took some coaxing to convince Nick to put a life jacket on and get in.  (Normally I would have made some visuals for him to follow.  But we didn’t plan the boat excursion in advance).  For persons like Nick, who have Down syndrome and autism it is important to show visuals so they understand what is going on and also what is expected of them.  Eventually Nick made his way to the stern of the boat.  His legs were trembling as he slowly went down the stairs.  Oh, but once Nick hit the water, he took off doggy paddling so fast as if he was after a fire alarm.🙂

 Grand Lake in Grove, OK…..

lake

After five days of visiting, games, filling up on homemade banana pudding, cobbler and ice cream, we hit the road back to Chicago.  Driving amongst the corn fields I got to thinking about our time with the family.  We are very fortunate to have their support and understanding about Nick.  I looked up into the sky at the clouds trying to zone out ESPN radio.  One cloud looked like a Dalmatian with wings.  Another resembled Dory, the fish from the Disney movie “Finding Nemo”.  Nick was busy tapping a water bottle and cracking himself up laughing.  I have no idea why.   What I wouldn’t give to get inside his noggin and see what he’s thinking.  Since that is not possible I can only go by his demeanor.

Nick hung in there well and did better than I expected at the family reunion.  The only time he got mad,(besides the anchor problems on the boat) was when the tables were rearranged in a different configuration for the final dinner. (He had been sitting in the same spot for every meal.)  Yes, he made loud noises, blew snot rockets and threw things just as he does every day. But that’s just Nick’s world.  I’m not sure what some of the extended family members know or think about Nick.  The ones who choose to engage feel a connection in his hugs, fake sneezes, burps and elbow bumps.  It warms my heart to see that Nick has those family bonds.  We made it without any meltdowns and Nick had a great time and for that, I am thankful.  That’s what is in my noggin this week. 🙂

~Teresa

Posted in Autism, Behavior/ ABA

Blog #77~Autism and Meltdowns

Blog#77~Autism and Meltdowns

I would rather write about anything else than what an autism meltdown looks like (even poop accidents).

poop icon

It’s a difficult subject, personal in nature and exposes a lot of vulnerability.  I am just one of so many dealing with these raging outbursts. My son Nick is 19 years old and has Down syndrome and autism.  So, for all of the warrior moms out there in the battlefield…. This one is for you!

When Nick was in the throes of puberty, his meltdowns were horrific.  He would destroy everything in his path.  His arms slung hard hitting, kicking, biting and drawing blood with his pinching.  These intense battles became so bad and frequent that I had to take action.  I was no longer able to control my own son.  Here is what I did……

Three things we did to get things under control:

1.  Nick was put on medication, Risperdal to help calm him down and be less agitated.

2.  I called an emergency IEP meeting and insisted that the school district’s autism specialist be brought in to help out. We tracked his behavior both at school and home to figure out what might be triggering his anger.  Then we came up with a behavior plan.  You see, every behavior communicates something.  In Nick’s case, he wasn’t being heard.

3.  The autism specialist determined that the staff, Nick and I needed to be properly trained to use the picture exchange system (PECS). The pictures gave Nick a voice that autism had robbed him of.  Finally, he felt in control.  The incidences of the teenage sized temper tantrum quickly diminished.

PECS Communication Book:

photo (123)

Fast forward to the present….. Nick has been unsettled.  He is expressing it by shoving us away.  It’s like he is saying, “Hey, I am 19 years old and coming into adult age.  Back the F#&K off!”  Nick had two serious meltdowns in the past week.  Each seemed to come out of nowhere.  But there is always something brewing inside. You just have to back track and figure out what might have been the trigger(s) to set him off.

Portrait of an Autism Meltdown: The Scenario, Triggers and Outcome

(Also known as the ABC’s: Antecedent-Behavior-Consequence) Here’s a sample form used to work on a Behavior Support Plan………

IMG01

Timeline of Nick’s Meltdown

A=Antecedents:

*Routine is off the past couple of weeks Nick’s Dad had shoulder surgery=added stress around the house.

*Nick has a runny nose and woke up way too early.

*Dinner at Nick’s Aunt & Uncle’s recently purchased home-new environment

*Al pulls into his brother’s driveway and has to back up a few times.  Nick hates it when you pull in and then have back up.  He thinks you aren’t going to stay so he panics, bangs on the window, pinches his cheeks and yells loudly.

*Nick’s bored and no one is paying attention to him.  He looks to stir things up. He sits down on the couch with his iPod, but doesn’t last there long.  He finds my purse and empties the contents it down the stairs. Then, he bonks poor Cali on the head with the can of tennis balls he is stimming on.

Poor Cali, retreats to the kitchen…….

IMG01 (2)

*Aunt Ali makes Nick’s favorite pasta dish, and has bought his favorite dessert. 🙂

little debbie cakes

*Oh no, I realize that once the Little Debbies are introduced Nick’s going to make a bee line to the shower. That’s his routine.

beelinne pic

*Sure enough, he strips down in the bathroom upstairs. The water doesn’t get as hot as Nick likes…. NOT GOOD, this is going to make him mad.

B=Behavior:

*He shivers and is pissed as I help him towel off.   I hand him his street clothes to put back on.  (I should have brought his pajamas.)  He flung them across the bathroom, then he proceeded to grab the tissue box, toothpaste, magazines, hand towel and hurl them as well. THIS IS IT…….

Point of no return

*I managed to contain him between the toilet and bathtub and shield myself as he lunges at me pinching, bruising and scratching my arms.  I use a towel much like a bullfighter does against a raging bull.  Only I am the one who becomes bloodied, not the bull.

bullfighter pic

*Nick is nearly my size.  There is no possible way to do *CPI Holds (see link below) on him anymore.  It’s more about getting him in a safe place and deflecting his blows.

calm down autistic child

It took 30+ minutes for Nick to de-compress from this meltdown, (most are 10-15 max these days).  I felt raw, defeated and exposed.  Nick started to work through his emotions.  He cursed, hit and pinched himself as if he was replaying the meltdown. My heart breaks a thousand times in these moments.

Consequence:

Eventually Nick showed remorse and said, “sorry”.   That’s when you know he has de-escalated.  He put on his clothes, said our apologies and drove home in silence.

THAT is a portrait of an autism meltdown!

The next morning, I brewed a K-cup and began to dissect what had happened to cause the meltdown.  Nick thrives best in a predictable environment and visual picture schedule that he can follow.

So, I go back to the ABC Functional Behavior form:

A=Antecedent (what happened before)? All the things listed above were building up inside him.

B=Behavior (Nick’s tired, confused, mad at the cold water and no pj’s, he lashes out.)

C=Consequence (After the meltdown, Nick de-escalates and apologizes and we go home.)

I’m still trying to figure out Nick’s world.  In retrospect, I should have increased his med dose before the dinner and made a visual schedule with pictures of their new home.  On the schedule put the following icons on:

“New house”

“Dinner”

“Dessert”

“All Done”

“Car”

“Home”

Or at the very least, just brought his pajamas.  So, I will re-boot and learn from this mistake just as I’ve done before.  Autism and meltdowns can be scary and brutal.  But they can also be prevented if you look ahead to the environment, and plan ahead for anything that might set your child off.

That’s what is in my noggin this week.

~Teresa

*CPI= “Crisis Prevention Institute offers trainings in “Nonviolent Crisis Intervention.”  The program is safe, nonharmful behavior management system designed to help humans service professionals provide the best possible care, welfare, safety and security of disruptive, assaultive and out-of control individuals even during their most violent moments”  For more Information: http://www.crisisprevention.com.

Posted in Autism

Update~ Under Construction

Update~ Under Construction

under construction

It all started with the heavy rains earlier this spring which lead to flooding in the basement.

photo (5)

The basement is put back together and looking pristine with fresh paint and carpeting.  But guess what?  Now I want the rest of the house done.  Twelve years and two boys can really beat up a house. Nick’s autism and raging meltdowns have put a lot of dents in the walls.  Both of their rooms have seen better days.

The ugly side of autism….Nick use to hurl all kinds of stuff at his bedroom wall.  Here it is all patched up…….

photo (16)

Next stop, fresh paint in the boys rooms followed by the new carpet installation in the rest of the house.  I think I just opened up a huge *can of worms!  🙂

can of worms

I have three days to get all of the knick knacks and breakables packed up and clean out the bottom of all the closets in preparation for the carpet installation. Oh, and there is the sitting room…..one corner stacked with clutter, ughhhh. This area could be featured on the show “Hoarders”.

In the words of Scarlett O’Hara, “I’ll think about that tomorrow.

Scarlet o'Hara

My sister in law, Ali saved the day bringing me boxes, wrap and wine!  Thanks dear Ali for all of this and helping me haul the heavy boxes of china, stemware and crystal that I packed up over the weekend out to the garage.  Home renovation is one sure fire way to get rid of clutter and organize.  🙂

Stay tuned for more about Nick’s world after this construction site gets completed!  That’s what is in my noggin today. 🙂

~Teresa

*Open up a can of worms idiom~

According to Wiki.answers and Wise geek: “To open a can of worms” usually means to bring a new set of distracting complications and difficulties to a discussion or a problem. As a “can of worms” is a wriggly mass of confusion, a topic may have many detailed and involved aspects, whether you realize them or not.

Metaphorically speaking, to open a can of worms means to inadvertently create numerous new problems while trying to solve one. Experts disagree on the origin of the phrase, but it is generally believed to be a Canadian or American metaphor coined sometime in the 1950s. Bait stores routinely sold cans of worms and other popular live baits to fishermen, who often discovered how easy it was to open them and how difficult it was to close them. Once the worms discovered an opportunity to escape, it became nearly impossible to keep them contained.

Posted in Autism, Down syndrome, Fun Side of Nick

Blog # 9~ Brotherly Love

Nick’s final exam schedule came home in the back pack last week.  I showed it to his brother, Hank who had just finished with his finals at NIU.  We both had a good laugh.

“Mom, remember my junior year of high school and those finals I had? They were a bitch!”

“How can I forget?  That one day you had a final in Trig and English.  Nick had the Blueberry Hill breakfast final.”

“Yea then the next day, it was Genetics and History and Nick’s was like Naperville River walk and shopping.  That was so pathetic!”

Each day that week, Nick got off so easy compared to Hank.  The rivalry of brothers extends past the boundaries of normally developed children.  So this week is all about brotherly love.  One question I am often asked is what the relationship is like between the two.  Rather than try to answer this I decided to go to the source, Hank.  Here is his perspective on the relationship with his younger brother.  Hank is going to be a sophomore at Northern Illinois University (NIU) and will be turning 20 next month.  The boys are 19 months apart in age.

My Brother Nick, By Hank Unnerstall:

“My brother Nick is not like any ordinary brother. There is an extra chromosome in the 21st pair which is the result of Nick having Down syndrome and later, an autism diagnosis that separates him from normal people. Having Nick as a brother has made me open my eyes to life in general and the traits that make me the man I am today.

Some of the earliest memories with Nick start from when I was around 5 years old. Being that young I did not fully understand why my brother was different but I accepted it because he is my brother.  I remember when I began getting older and going to elementary school when my mom and brother would pick me up and drop me off at school. Nick would be doing his normal sound making and hand clapping in public that would sometimes embarrass me in front of my peers. I also recall the times at the old California house we had where Nick and I would start messing around and wrestling with each other but then Nick would take it seriously and start pinching me. His ways of fighting back around that time were much less harmful than it is now when he has one of his meltdowns or I like to call them “monkey boy” episodes. These memories are some examples of tough things in which I have had to deal with in which growing up with my brother.

Hank and Nick at San Francisco Bay….

It would be remiss of me if I didn’t mention a horribly embarrassing time.   Back around my freshman year of high school, Nick and his respite worker and I all went to Arby’s for a late lunch. Once we got our food we sat down, Nick started to make loud and disgruntled sounds when we put his food in front of him. I told him to be quiet in a not so nice tone. Next thing you know he became furious and proceeded to throw his food and random objects like trays, sugar packets and salt shakers all over the place.  We tried to calm him down but he was at the point of no return (aka monkey boy.)   I went on to restrain him and he was pinching, kicking and biting, anything to hurt me.  Somehow we ended wrestling around on the ground and to the other people in the restaurant it must have looked like we were fighting.  This was awkward and embarrassing for me because I was much bigger than him.  I knew it didn’t look right. I just wanted to leave and never show my face again.

That was the worst, or well at least one of them!

 But, there are many traits to Nick.   For example, he is usually a very happy and silly kid who always has a grin on his face. That’s why people love him at school and of course our family despite what we deal with when relating to Nick. Also, even though Nick has autism it does not stop him from being a socially engaging little dude even though he can’t speak. He loves to get attention whether it is him trying to act cute or to negatively do something to get ours. For example if we do not pay Nick any attention for a while he might spray shaving cream over the stairs.

Some of the best memories I can recall having with my brother can be the times where he will just sit next to me on the couch and watch TV with me and just chill out. Also I love to see him dance intensely while listening to the music that I provide him which is usually hip-hop/rap. Basically whenever Nick is in a good mood and happy he always knows how to put a smile on myself and many others faces. Having Nick as a brother has taught me to be a very patient person. I think I got this trait from the numerous times I have had to babysit Nick throughout the years. Also I feel that I have a certain outlook on life after growing up with Nick. For instance, Nick is always happy about the smallest things and he’s the one who is mentally disabled. So how I’ve been trying to live my life is to the fullest and I’m always trying to be as positive as possible no matter what life throws at me.”

Hank and Nick at the Sox game this past weekend……

Oh how they have grown up since the days of past when they use to play sweetly on the living room floor.

My Dad always said they looked like innocent cubs wrestling on the ground…..one more…. 😉

.

Those peaceful days long faded as Nick became more frustrated…..giving way to huge meltdowns as he became older.  I applaud Hank putting up with the challenging behaviors of having a brother with not only Down syndrome but also autism.   We did our best to provide support by taking him to sibling workshops along with having him read “The Sibling Slam Book” by Don Meyer.  This is an excellent resource of what it is REALLY like to have a brother or sister with special needs.  We carved out time to just spend with Hank (buddy days) so he wouldn’t feel like Nick, Down syndrome and later autism didn’t consume our family.  I am very proud of Hank and his relationship with his brother.

It has been a crazy, twisted road we have been on but let me just say this….While the sibling relationship takes on a different form with a special needs child, there is no doubt that the bond is there.  I wish that Hank and Nick could have conversations, play video games and throw a baseball like most brothers do.  But that was not meant to be. One thing for certain is that there is a connectedness and love between them.  Last fall Hank took off for NIU. How did I know that Nick missed him?  He walked around with this picture in his hands, never letting it go even as he used the bathroom 🙂

Brotherly love is evident.  That is what is in my noggin this week.  Until next Monday, may your short week be full of love and connections spoken or unspoken.

~Teresa

***Special thanks to my son, Hank my guest blogger extraordinaire 🙂