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

Blog #135~Final Week in School

Blog #135~Final Week in School

This is Nick’s last week to be in school.  His 22nd birthday is almost here.  Then, the little yellow bus stops coming to the door.  My son Nick, has Down syndrome and autism.  He is aging out of the school system and will enter the adult world.  For the past few months we have been working with his current school and the adult day program he will be attending.  Nick has been at the new program part time for the past few weeks and the transition is going well. All the pieces seem to be in place.

It’s been an amazing journey watching Nick grow and learn.  The times have been joyous and triumphant, while often frustrating and heartbreaking.  Today I want to pause and give credit to all of the teachers, case managers, aides, therapists, bus drivers and school district personnel and respite workers that have helped along the way.

Nick started at the Klein School District (in Texas) at just 8 weeks old.  This early intervention program had a wonderful staff and therapists.  They worked to strengthen his low muscle tone (a trait of having Down syndrome).  When Nick was nearly 3 years old and not walking yet I said to his physical therapist, “I don’t think Nick is ever going to walk”.  To which she replied, “I have never met a child with Down syndrome who hasn’t walked yet”.  And you know what she was right.  Nick did eventually walk at age 3 1/2! 🙂

After age 3, Nick attended the early childhood program at the Arbor School in Houston.  He made so many gains with the combined co-treatment therapies offered by Texas Children’s Hospital.  Not only did he start to walk, he learned how to chew solid food without choking.

We moved outside the San Francisco Bay area when Nick was 4 years old.  I can’t begin to thank the Down syndrome Connection support group along with his therapists, Kendra his Kacy at Learning on the Move.  I learned ways to incorporate a sensory diet for Nick, and how to become an advocate for my son.

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In 2001, we moved outside the Chicago area.  During his elementary years Nick was in a full inclusion classroom.  This worked because of the excellent help provided by his support teacher, along with dedicated teachers, aides and therapists.  It was during this time that Nick’s academic goals shifted to more functional goals in his IEP.  While this was heartbreaking, I remember gaining strength in what his support teacher said.  At the beginning of his IEP meeting in 4th grade Sylvia said,  “Nick has a lot of strengths and we need to focus on those”.

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Nick also began to get private speech and OT at Suburban Pediatric Therapies.  He has learned so much and developed a great relationship with all the staff at this clinic. 🙂

Nick loves to work with Brian…..

Brian and Nick

The middle school years were rough for Nick.  Having the diagnosis of autism along with Down syndrome was a mixed cocktail with a bad taste of frustration (due to lack of speech). This lead to meltdowns and destructive behaviors.  The shift led back to a self-contained classroom.  I don’t think we could have survived this time without the support of NADS (National Down Syndrome Association) and Little Friends Center for Autism.  I learned how to manage the autism component with their help.  Getting support is crucial in a crisis situation as this was.  I also give a lot of credit to his support teacher Jess (aka “The Nick Whisperer”).  She believed in his capabilities, understood him and made the last years of middle school a success.

High school was a self-contained setting.  It was during this time I saw Nick mature and handle his behaviors much better.  He took pride in his vocational jobs both in school and out in the community.  I appreciate all the staff that worked with him and helped him grow during that time.

Working at Re-Store Habitat for Humanity with Ms. R….

Nick packaging door knobs_Habitat for Humanity (6)

Working at Tabor Hills Residential Community…..

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Nick Senior Portrait….

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After Nick graduated from high school he attended a post-secondary transition program (STEPS) where he continued to hone his vocational skills, had work jobs and community trips.  He has enjoyed this program immensely!  A big thank you for the staff at STEPS for helping Nick navigate his jobs, teaching him new skills, working to make his AAC talker device be a success and assisting with the transition to the adult day program he will start full time next week.

Nick on a delivery run job…..

Nick delivery

This journey with Nick has been a wonderful and wild ride, 34 fire alarm pulls and all!   I am grateful to all who have worked with Nick and touched our lives.  Truly, you all have been angels lighting the path along Nick’s way.  That’s what is in my noggin this week. 🙂

~Teresa

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Posted in Autism, Down syndrome, Speech and Occupational Therapy

Blog #121~10 Years of Autism

Blog #121~ 10 Years of Autism

Last Saturday, the Chicago White Sox gave a replica of the 2005 World Series Ring to all the fans. This was to commemorate the 10 year anniversary of the Sox winning the World Series.

This sure beats the heck out of any bobble head they’ve given out…

White Sox Ring

I slipped the heavy ring on, that Al brought home from the game. I thought back on the week that the White Sox won the American League Championship securing their spot in the World Series. That was the week, that we got the firm diagnosis that our son Nick, had autism. Nick is now 21 years old and has Down syndrome along with autism. A lot has happened in the last 10 years, and I’ve learned plenty in the process.

Sox  Nick and mom

What about the 11 years prior to the diagnosis of Nick having autism? Well, when he was 5 years old we had him tested but it was found that he was not on the autism spectrum because he was highly social and the oddities were due to having Sensory Integration Dysfunction.

According to the Sensory Processing Disorder Foundation (SPD Foundation), “Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”)

is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks.”

Nick sought out input by tapping objects, walking heavily and stimming with his toys to help organize his senses. His occupational therapist worked with him weekly providing him with a sensory diet.

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In addition, Nick also has Verbal Apraxia of Speech (an acquired oral motor speech disorder affecting an individual’s ability to translate conscious speech plans into motor plans, which results in limited and difficult speech ability). The sensory and speech conditions blurred the lines, therefore the autism didn’t come to view at the time.

As Nick entered the throes of puberty, it became evident that there was more to his behaviors than just Down syndrome. That’s when we sought out Little Friends Center for Autism to do an assessment 10 years ago. Looking back I had a hunch he did. However, part of me wasn’t ready to face such a daunting diagnosis as autism. We got the report from Little Friends the day that the White Sox won the ALC championship. That report was the key to opening up a new world for us.

The official diagnosis of autism, allowed us to request more specific services for Nick. This included a better communication system, behavior plan, training, finding the NADS (National Association for Down Syndrome) support group for dual diagnosis families, and respite care through the state. With the help of Little Friends, I attended training sessions to help Nick foster independence and better communication. More importantly, I learned how to get my son toilet trained once and for all, and out of those Depends diapers.

Nick has grown a lot in the last 10 years. Things are not near perfect, nor will they ever be. We face our daily  battles. He is still stimming and raising autism awareness everywhere he goes. But the meltdowns are fewer and far between. Nick is happy and a funny guy. And when I see him standing there in his boxer briefs I am reminded of perhaps the greatest accomplishments in my life. I’m proud to say that we are done with what our autism community refers to as “Code Brown”

No more poop smears!

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If you are a parent and have a hunch that your child may have autism, this is my wish for you. That you go get an assessment, take that piece of paper and use it as your ticket to get the services to help your child.  Seeing where Nick is today is a sweet victory that I savor.  It feels like I’m winning the series in Nick’s world.  That’s what is in my noggin this week!

~Teresa 🙂

Posted in Autism, Behavior/ ABA, Down syndrome

Blog #70~When Down Syndrome and Autism Intersect

Blog #70~When Down Syndrome and Autism Intersect

 
I just finished reading the Woodbine House book, When Down Syndrome and Autism Intersect, A Guide to DS-ASD for Parents and Professionals. As always, Woodbine House delivers the goods. I only wish this book had been available fifteen years ago when I began to suspect that Nick had something more going on than just Down syndrome.

down syndrome and autism intersect

I started to notice little things at first. Around the age of five Nick started to bang objects and exhibit other odd behaviors. After doing some internet research I stumbled upon a sensory processing disorder checklist. Nick met many of the criteria which led me to believe this was the reason for those behaviors. When we attended the local Down syndrome support group functions I also felt that he didn’t speak as well as his peers.

Nick is more interested in his hand flapping than Santa 🙂
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So, I went to have an evaluation done to see if he might have autism. The results of this indicated that Nick did not have autism as he was highly social and his language deficits were a result of having verbal apraxia of speech. For more information on verbal apraxia of speech I would suggest reading this Woodbine House book, Speaking of Apraxia A Parent’s Guide to Childhood Apraxia of Speech:

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Six years passed and as puberty was full on, Nick’s behavior and meltdowns became more violent and dangerous. The staff at his school struggled along as well. It was nagging at me. I brought up my concerns and the need for an evaluation for autism. The staff informed me that this was not necessary as there was already a primary evaluation of Down syndrome. We decided to have an independent evaluation done at Little Friends Center for Autism, http://www.littlefriendsinc.org. Getting the official diagnosis of autism confirmed my suspicions and gave me a sense of relief and validation. Most importantly, the formal diagnosis allowed for getting the services of the school district’s autism specialist. This specialist helped to identify what triggers set off meltdowns and was able to put a behavior plan in place along with a better picture communication system with proper training for the staff and myself.

Nick age 12, proudly stands on the podium winning the state gold medal in the softball throw at the Special Olympics…

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According to the Kennedy Krieger Institute, http:// www.kennedykrieger.org,  around 10-15 percent of children with Down syndrome also have autism.

For an autism diagnosis there are three areas of development that a person must show significant difficulties:

1. Social Functioning
2. Non-verbal or difficulties with communication
3. Restricted interests and activities

Some of the symptoms and behavior shown with children having Down syndrome and autism are:

 
*Significant lack of social response
*Difficulties with communication and reported loss of verbal and expressive language.
*Repetitive behaviors like hand flapping, spinning or rocking, fixation on inanimate objects (strings, fans, mirrors, water, etc..)
*Sensory issues including the intensified sensitivity or need for more sensory input
*Behavioral challenges including frequent tantrums and physical violence

 
The book, When Down Syndrome and Autism Intersect contains a great deal of information on health issues and gives practical information on tackling the complex world of raising a child with Down syndrome and autism. My best advice is this, if you suspect that a child with Down syndrome has something else going on then run; don’t walk to get a firm diagnosis. There are more services that become available to help with challenging behaviors, communication and learning for our kids. That’s what is in my noggin this week! 🙂
~Teresa

Posted in Autism, Down syndrome, Education and Special Needs

Blog # 24~Top 10 Things I Have Learned While Navigating Nick through School

Top 10 Things I Have Learned While Navigating Nick through School

This weekend I was prepping for a lecture called “A Parent Perspective” which I do at Aurora University.  For this semester there are two classes one undergrad and a graduate student class all who are/ or planning to become teachers.  Since Nick is a senior in high school I decided to include a top ten list of some things I have figured out over the years. While compiling this list I couldn’t help but think back to those early days. I was a novice and such a chicken when it came to IEP meetings.  I have a degree in teaching secondary education (Kinesiology and Health) but very little experience teaching special education.  I took a class similar to the one I am lecturing while at The University of Texas.  It gave a broad brush of special education and included an internship in a self- contained classroom and gym class. Beyond this I knew very little on how to take the helm and steer these uncharted waters.

Aurora University working with Elliott who leads the classes….

The early intervention program was easy (birth-three years old.)  The staff was nurturing and it was a *can of corn.  Once the cord was cut Nick entered the early childhood/ pre-school program things were more serious and the meetings took on a different tone.

Because Nick had very low muscle tone (a trait of Down syndrome see blog #7 Mama Mia, for more information on DS traits) he was delayed in gross motor activities.  He didn’t walk until age 3 ½ nor eat solid foods.  At age three during the transition from early intervention to early childhood/pre-school I enlisted a private speech therapist who specialized in feeding.  Amazing how one person can impact your life.  Pam opened up my eyes.  She got me thinking outside the box.  She also worked at a private school in Houston and suggested we look at putting Nick there.  The private school called The Arbor School had one opening three days a week.  It was an oasis, this all-inclusive resort with all of the speech, occupational and physical therapy right on campus working together.  They got their hands on Nick and worked magic. Nick attended The Arbor School three days a week and the public preschool program the other two days.  When the IEP came around at the public school, the whole Arbor School team came.   Our entourage sat down and matter of fact like made sure every attention to detail was addressed.  I was stunned.  What you can actually assert for yourself and get all kinds of services, equipment and therapy hours, I had no idea.

Nick at the Arbor School…..

The petting zoo came to the Arbor School during Go Texas Rodeo Week…

In California when Nick was in first grade I found my concerns of his need for a communication system going on deaf ears.  I brought in the Director of the Down Syndrome Connection support group.  The entire staff sat up straight as she advocated for my son.

Nick and I in Livermore, California…..

Much the same in middle school I enlisted the help from Little Friends Center for Autism.  I can’t say enough about the Arbor School, The Down Syndrome Connection and Little Friends.  What a gift they gave me as they showed me how to become an advocate for Nick.

So here is……….….The List!!!!!!

Top 10 Things I Have Learned While Navigating Nick through School

  1. Determine a method to communicate with the staff (communication notebook, email, daily reports.)
  2. Meet with the support teacher to discuss goals for the following year. Request all goals and reports from each department for review before the IEP meeting.
  3. Get everything down in writing in the IEP (from a 1:1 Aid to the chewy sensory toy.)
  4. I am not a bad parent because my child won’t keep gloves on/ or has a meltdown in school.
  5. Sometimes the parent has to be the one to rattle the cage.
  6. Get help when you need it (support groups, workshops, trainings, respite care, etc..)
  7. Know your rights, Read Wrightslaw.
  8. Don’t settle for just any solution if a problem
    doesn’t get better. There is always a better way.
  9. Sometimes as a parent you have to let go of your own dreams for your child so they can move down a different path.
  10. The parent is the biggest advocate for their child with special needs, trust in that.

Bringing support into IEP meeting does give a parent confidence.  But in most IEP’s my hand has been on the helm.  What I know for certain is that communication lines have to stay open.  I also learned to quit beating myself up because Nick had meltdowns (now we know that he was powerless because he couldn’t communicate his needs and it is not my bad parenting.)  Once the autism diagnosis was given, I had to reach out for help get more training and arm myself to fight the big fight.  I quit settling with the school staff and learned that I had to ask for more to help my son thrive. I wasn’t being a bitchy mom; I approached the problems in a matter of fact, but firm manner. And sometimes that means I have to be the one to rattle the cage to obtain services to support my son.  In addition, I found that just because I have a dream for Nick doesn’t mean he can fulfill it.  Facing the fork in the road that separated him from an academic curriculum to a functional curriculum enabled Nick to focus on what he was meant to do. Hello T, he just isn’t ever going to write his name, let go of that academic goal.

So here we are, Nick’s senior year and after riding some rough waves now the seas are relatively calm.  We survived and came out on the other side much wiser and stronger.  That’s what is in my noggin this week.  Until next week, I hope yours will be a *can of corn.

~Teresa

* According to Wiki Answers: The term “Can of Corn” is a phrase used to describe a softly hit baseball as it could easily be caught. The term originated as a customer would ask a grocery clerk for a can of corn the store clerk would grab a can from the top of a stack of cans, and would softly toss the can down to be caught without harm.