Posted in Education and Special Needs

Blog #43~Taking the Next Step after High School

Blog #42~ Taking the Next Step after High School

In a few months Nick will be walking across the stage to accept his high school diploma.  We are not doing the typical things you do for senior year.  No need to reserve the tux or limo for prom.  It’s not in the cards to visit any college campuses.  And ten bucks says that the hat and tassel are going Frisbee air born as he crosses the stage at the NIU Convocation Center.  Question is….. What does someone who has Down syndrome and autism resulting in severe cognitive and speech delays plan to do after high school?

Actually since Nick has not met the academic requirements needed for a diploma, he will receive a “certificate of completion” upon graduation.  He did letter in high school and a look at that GPA.🙂

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Once the “certificate of completion” is put on the shelf, we move into the next phase for Nick.  The program is affiliated with the school district and called STEPS (Supported Training Experiences Post-Secondary).  Under the *IDEA law, a student with special needs may continue with high school or enter a transition program up until they turn 22 years old.  The decision for placement is based on the child’s individual needs.  Students with developmental delays may benefit more by having extra time to work on vocational, social/leisure, self-help skills along with their educational training.  Many students who are higher functioning academically may be able to take college courses and have paid jobs.  Last week we had the opportunity to visit the campus and get a closer look at the STEPS program.  Al attended the first session.  I followed up with Nick since we had to do a team tag with him and went to the second session geared for graduating seniors.  While we waited for the second meeting, Nick and I took a tour of the building. By the way, all but one fire alarm is not covered but I bet it will be soon.🙂  He loved the campus, especially the sensory room.

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So here’s what I learned about the next phase for Nick.  The STEPS program is designed to build a bridge between school life and adult life.  The focus is to identify what services are needed and what linkages need to be made to help your child be successful in adult life.  The questions not to ponder are as follows:

1. What does Nick need to connect to the next level of adult life? 

2. When finished with public school, what type of work will Nick be involved in (paid job, volunteer work?) 

3. Will Nick participate in a vocational and/or life skills day training program or enroll in a degree seeking program?   That question is easy to answer.🙂

4. Upon completion of public school what arrangements need to be made for independent living (community activities, living arrangements, sports and recreation, transportation, healthcare, financial support, emotional support)?  How do we plan to access them? What supports are needed?  Okay my head is spinning now, Calgon take me away!

So the task at hand is to figure out what Nick is good at and also what he likes to do.  From there we work with the team to build a program with this in mind.  The three main areas are educational and vocational training along with building his independent living skills.  Each classroom has a function in the building.  There is a kitchen to work on cooking skills.  One classroom is built around vocational skills (filled with can crushers, shredders, work bins, and the campus micro enterprise that includes making note cards and beaded jewelry.) A current STEPS student has her own business making beaded jewelry.  Check it out at http://www.specialsparkle.com!  Another room is for fitness and recreation filled with music, a Wii gaming system and comfy couches.  There is also a sensory room along with a few others that are used for academics and working on self-help skills (like time management, money handling, riding public transportation, etc…) Again, the program is centered on the individual their goals and getting them to that place by the exit date which is the day before their 22nd birthday.  I should add here that some students exit earlier if they reach a place where they are working independently at a paid job.

So Nick will have new jobs next fall and opportunities to do community service along with social functions (clubs, dances, bowling, etc…) It looks much like what he is already doing in high school but more laid back (no school bells, the students manage their own schedules.)  Looks like I will need to get an app for that. Thanks Sandy C. for this suggestion……..

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I felt better after seeing the campus and visiting with the staff.  Amazing how the anxiety level goes down when you can actually get a visual of what lies ahead.  Now all I need to do is answer all those questions above, yikes!  Maybe I’ll go make a cup of tea and mull over it. I’ve got a few weeks until Nick’s IEP meeting. 🙂

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That’s what is in my noggin this week, stay tuned maybe I’ll have some answers by mid-March!

~Teresa

*From Wikipedia: The Individuals with Disabilities Education Act (IDEA) is a United States federal law that governs how states and public agencies provide early intervention, special education, and related services to children with disabilities. It addresses the educational needs of children with disabilities from birth to age 18 or 21[1][2] in cases that involve 14 specified categories of disability.  In defining the purpose of special education, IDEA 2004 clarifies Congress’ intended outcome for each child with a disability: students must be provided a Free Appropriate Public Education (FAPE) that prepares them for further education, employment and independent living.[3]

Under IDEA 2004:

  • Special      education and related services should be designed to meet the unique      learning needs of eligible children with disabilities, preschool through      age 21.
  • Students with      disabilities should be prepared for further education, employment and      independent living.
Posted in Fun Side of Nick

Blog #42~Love, Nick Style

Blog #42~ Love, Nick Style

Last week over Valentine’s Day I got to thinking about the ways in which Nick shows love, affection and compassion.  How can a person having both Down syndrome and autism do so without being able to use many words?  I threw the question out there to those who are closest to him.  I found some interesting responses along with a few similar, underlying themes about love, Nick style.

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What a great show bordering on naughty for the 1970’s.  Anybody remember it? It was must see TV! 🙂

What is love?  According to Wikipedia, Love is an emotion of a strong affection and personal attachment.[1] Love is also said to be a virtue representing all of human kindness, compassion, and affection —”the unselfish loyal and benevolent concern for the good of another”.[2] Love may describe compassionate and affectionate actions towards other humans, one’s self or animals.[3]

The famous balcony scene from Romeo and Juliet. 1884 painting by Frank Bernard Dicksee. Courtesy of Wikipedia.….

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As Nick’s mom, I feel his love freely with the kisses he gives me.  They are cute little pecks on my cheek or sometimes on my shoulder.  He gives those to his Dad and brother and even the cat sometimes. I see it in his eyes that gleam when he is happy.  I sense it when he offers up his neck for me to blow him some raspberries.  I know it when I come home from a long evening out and the icon strip has my picture on it. I see this time again with the picture icons.  He will hand me one with his Dad, grandparents, aunts, uncles, brother, teachers and former respite workers like Jess and Mr. T.  I know he misses them and wants to see them.  The day after my father passed away, he handed me the picture of my Dad on a gloomy, snowy morning in October.  I held it and gave him a hug.  As I looked out the window fighting back tears the sun’s rays began to peek out behind the clouds.

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Al’s parents noticed this too.  Here is what Jim and Theresa U. had to say about how Nick shows love. One thing comes to mind that, I think, is pretty specific.  I think when he puts his “icon” on your shoulder or lap, or wherever, it shows that he has trust that you will listen to his request for whatever the icon shows.  I also think that the fact he even picks us out in a crowd indicates that he likes us and knows that we like him too and are willing to honor his request.  It is a way of getting our attention and showing affection. I think “high-fives” and hugs are a definite sign of affection.  Also, he loves to be “kissed” on the side of his neck, too!  It’s really not a kiss that he wants but he does come to you for some affection…..in his own way.”

Nick with Gma Theresa…..

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Nick’s teacher, Daina Hunt had some interesting insights from the school setting…

“I think Nick has many ways in which he shows his feelings of love, affection, and compassion.  Physically, he does a great job by sharing elbows, rubbing noses, high fives, etc. I think that Nick is very affectionate with adults with whom he has built strong relationships. I also feel like Nick’s sense of humor is something that he shares with those he is close to.   

I’ve also seen Nick have a “crush” on another student this year.  He often picks her when he has to take turns and often watches to see what is going on with her when we are in the classroom.  When she becomes upset, Nick will quickly look to her and raise his voice in protest too.  Now, I understand that Nick is not a fan of noise made by others, but his reaction to this student is unique.   

I’ve seen Nick’s compassion extend even farther to others.  He is good at mimicking others emotions, and pointing out emotions (think about the sad egg t-shirt). He also has a genuine side of compassion.  I have had staff tell me that Nick has cried after watching others cry. 

From my own personal experience, I can say nothing is better than when Nick asks for a raspberry, nose, or elbow.  The raspberries and noses may not be totally age appropriate, but it rocks to know he cares enough to share one with me.” 🙂 

The infamous “egg shirt”…….poor egg is so sad… 😦

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Yes, Nick does like to bond with those he loves by offering his neck up to get some raspberries.  Aunt Ali had this to say, “We know how Nick and I bond with our hellos full of raspberries!!!  He enjoys receiving as many as I can give!  His tender hand touch is always there to say “hi” when we are together and hanging out.”   My friend KB agrees,I just wanted to lip blow in his neck.  It makes me laugh as much as he laughs. He loves that kind of affectionate connection! I can say his love is also expressed when saw Sadie or the cats.. Even when you brought him to Petsmart adoption center!”

His aide and respite worker Lara have a special bond,Nick will sometimes lay his head on my shoulder and then look up at me with a smile and a twinkle in his eyes.” 

Sometimes it’s a touch on the cheek like with Grandma Babs, or rubbing elbows or noses.  My brother and his daughter Courtney think the *Eskimo kisses are awesome!

 Nick with his cousin Courtney…….A new take on kissing cousins 🙂

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Here with his Dad as he says, “nose!”

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My sister, Aunt Laura has a unique bond that neither time or distance separates.  “Nick gives me special things like the “eyes” or Nick might decide that he wants to touch my nose or he will touch elbows with me then if he is in a really loving mood he will give me a very special belly flash.”

Oh yes, the belly flashes.  I don’t even know how that started but it did years ago when he was around 3 or 4 years old. There are only a select few that are in what we called “The Belly Flash Club.”  My friend Sally is an elite member and recalls it as a sure sign of approval and affection.  While cute then, we eventually had to try and wean him off that practice so he wouldn’t come off as a pervert.   Well, that was until recently. Here is what Brian his speech therapist had to say, I’m not sure if you were going to include in your blog Nick’s affinity for flashing his abs as a show of affection. Of course I don’t belong to this exclusive club, but the only two female grad students he has ever worked with are!” 

Let me add that these two grad students are young and very attractive. 🙂

So, that is love, Nick style.  Hope you enjoyed the unique perspectives.  For more about Nick and his special relationships check out Blog #6~ The Nick Connection which is located in the May archives.  That’s what is in my noggin this week.  Until next Monday, peace, love and belly flashes!

~Teresa

*Eskimo Kiss- According to Wikipedia…..

“In modern Western culture, an eskimo kiss is the act of pressing the tip of one’s nose against another’s. It is loosely based on a traditional Inuit greeting called a kunik.[1]

A kunik is a form of expressing affection, usually between family members and loved ones, that involves pressing the nose and upper lip against the skin (commonly the cheeks or forehead) and breathing in, causing the loved one’s skin or hair to be suctioned against the nose and upper lip.[2] A common misconception is that the practice arose so that Inuit could kiss without their mouths freezing together. In fact, it is a non-erotic form of greeting that serves as an intimate way of greeting one another for people who, when they meet, often have little except their nose and eyes exposed.”

Posted in Government/Legal Matters Related to Special Needs, Recreation/Leisure and Special Needs

Blog #41~Back to the Future

Blog #40~Back to the Future

Candles blown out, presents opened and heads resting on pillows.  Another birthday week celebrated.  It’s was a big one for Al the 5-0 and Nick now 19 years old.  Only a day apart separates them. On the night of his birthday, Nick had crashed in his room, but he woke up and crawled in the king bed next to me.  I hesitated but pulled the covers up and nestled my cheek next to his.  I should have walked him back to his bed, but I wanted him near me. I needed to feel his warmth and hear his breath against my cheek.

Flashback to 19 years ago, Nick was held in ICU under oxygen and monitored.   I didn’t get to hold him or nurse him that first night.  I barely knew him. Small, helpless, holding on, I had no idea if he would be okay.  I wouldn’t be able to put my arms around him that night and it crushed me.

And so on the evening of his 19th birthday, I took in his breath and felt his limbs stretched long like a mature adult. I gazed at his features, the almond shaped eyes and tiny nose.  Similar they were, as if I could close my eyes and transport myself back to 1994.  And for a moment I did, to the time when I was in fear for my son’s health and whether he would be okay as the two nuns entered my room to hold hands and pray.

Exhale, I am back to the future. Slapped into what I should face.  But I don’t want to.  It’s an ugly web that is snagged with red tape. The maze of bureaucracy is daunting. First it was filing to continue to be Nick’s guardian (yes when he turned 18 we had to file to become his legal guardian since he can’t take care of himself.) Second it was to apply for SSI benefits that he qualifies for. Third, when your child turns 19 then you must contact DHS to have them switched from child Medicare benefits to adult. I only found out about this snafu the night before his 19th birthday, yikes!  I still don’t think I have my mind wrapped around any of this.

And on top of this, Nick is graduating high school in May and moving into a transition program until age 22.  I can’t say that I am ready to face the future after that.  Where will he live? Will he be taken care? Is he going to be safe and happy?  I attended a transition fair last week on the eve of Al’s 50th birthday.  I filled up my goodie bag with flyers, free pens, pads, cinch bags and sage advice. I came home and hit the wall, overwhelmed and that is where I stopped; until tonight.

After dinner out with Nick’s grandparents we came home to celebrate the birthdays. It is cold.  The heater went out sometime over the weekend. We kept our coats on as we gathered around the kitchen island.

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As I lit the candles on the chocolate cake for Nick to blow out, I had a flashback. While we cupped our hands around the steamy cups of coffee I spoke.

“Isn’t this ironic, here we are with no heat in the house.  It is just like when Nick was born and the ice storm had knock out the power. We didn’t know what we were doing while Nick lied there in ICU or whether he was going to be okay.  And poor Hank was so scared of the fireplace; that’s all we had to heat the house.”

Al pointed out something I had forgotten. “Mom you had the oven and heaters blaring on the stove top to keep it warm, remember?”

Oh how we were lost, Nick in ICU…. No power, and a new diagnosis of our son having Down syndrome…There is more to the story….. But you are going to have to wait for the book 🙂

Back to the present, I sit by the fire writing and try to stay warm.  I pictured little Hankie just 19 months old and scared standing at the staricase immobilized, pointing to the fireplace saying, “hot.”

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Birthdays bring a time to pause and reflect back and also look to the future. I don’t have any answers on Nick’s transition plan. In a way like Hank, I have been immobilized. I am trying to push the webs out of my face, and walk through but I feel a push and pull. I need to look to the future for my son.  He is 19 and like his brother Hank who is 20 and a sophomore at NIU, there is a need to let him spread his wings. But Nick knows no fear or evil.  I can’t help but feel like I am the only one who can protect him. That’s what is in my noggin this week. For now I will continue to pray for strength to fight my way out of this tangle.

~Teresa

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Baby nick 🙂

Posted in Fun Side of Nick

Blog #40~Say It’s Your Birthday

Blog#40~Say it’s your birthday…

“You say it’s your birthday
It’s my birthday too–yeah
They say it’s your birthday
We’re gonna have a good time
I’m glad it’s your birthday
Happy birthday to you.”

Beatles birthday

It’s a silly thing we do…… singing this Beatles tune when calling certain people on their birthdays.  Speaking of which, this week two of the Unnerstall men have theirs.  Al is hitting the big one on Wednesday.  That’s right the big 5-0. 🙂  On the exact day that you turn 50, the AARP card application magically shows up in the mailbox. I proceeded to tear it up and to this day still toss them in the trash. But Al plans to embrace it fully to the extent that will make them go bankrupt.  On the evening of Feburary 6, 1994 I went into labor a week earlier than my due date.  I honestly thought I might have the baby on Al’s birthday.  But like his brother, Nick took his time and so he was born the following day. He was 6 pounds, 14 oz. and was 19 inches long. I gained exactly 19 pounds with this pregnancy.  Nick will be 19 years old on Thursday. 🙂

Here is a look at some of Nick’s birthday celebrations.  What a journey it has been.  Nick’s first birthday was celebrated with my side of the family and with my friend, Sally’s family.  Nick has very low muscle tone and you can see that my mom had to hold him with support over the cake as he blew out the candles.  At this point he was sitting up but far from being able to crawl very far much less pull up to stand.

A single candle on the homemade chocolate cake.  Hank is close by on the right.  Oh, my bangs are hideous…

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It wasn’t until Nick was 3 ½ until he was able to walk on his own. Here he is at the Arbor School in Houston celebrating his fourth birthday.

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We relocated to the East Bay area outside of San Francisco. Many of the celebrations were simple. This is a sad little cake. It’s pathetic as Hank would say. I am ashamed I made that.

Hank holding his brother’s hands so he won’t flap them by his ears…..

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So much for that 🙂

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He is sooooooooo excited! He is going to town stimming those hands by his ears. Looking back I see it; a trait of autism.

This is more like it. A homemade yellow cake with chocolate frosting that Hank and I made.  In case you were wondering I don’t have any formal cake decorating training, shocker right 🙂

Nick turns 6!

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Here’s Al at age 6, sporting a short cut like Nick…..all together, aahhhh he’s so cute…..

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We moved to the Midwest and Nick celebrated his 7th birthday in style with a legit cake and the party theme was Thomas the Tank Engine.

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At school for his 8th birthday, Nick got a special lunch with a Happy Meal. Looks like it is working….what a happy guy!

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The following year the birthday boys celebrated together with Al’s folks Jim and Theresa on Super Bowl Sunday. Best part of the day was the opening kickoff that Devin Hester ran back for a touchdown.
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Unfortunately, Da Bears came up short. But it looks like the birthday boys got some nice presents.  Nick is really growing and rocking that Brian Urlacher jersey!

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Nick’s got to get more lung power for his 17th, whew…..

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Big breath now you have 18 candles to blow out..Big guy’s got this!

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I hope you enjoyed this little taste of the boy’s birthday celebrations.  Common theme seems to be chocolate cake in all shapes and sizes. What a contrast from the low tone baby 19 years ago to present day.  My good friend April G. always says, “Funny thing if you feed and give them drink, they will grow.” Nick has done that in his own way and pace.  Not always in the time frame I had invisioned for him. But he did, and I couldn’t be more proud. That’s what is in my noggin this week.  Happy birthday boys and cheers to many more.🙂  Have a great week everyone and may your cake be full of candles this year and for many more to come!

~Teresa