I’m back – finally!

I’ve been lax in my posting during the past month – between having a fun family bout with the stomach flu and the Christmas rush I wasn’t writing as much as I’d planned.

Well now I’m back!

Sorry if you’ve missed me – and if you have, thank you very much!

2009 looks to be an interesting year for us. We are currently in process of getting a new pediatric neurologist for K-Oz. It’s been very difficult to find one since we live in a rural area. The closets one was four hours away and that’s who we’ve always seen.

To be honest, we didn’t like him at all. We’d drive four hours to see him and he’d spend maybe 5-10 minutes with us, wouldn’t really answer our questions (for pretty much every question we asked his answer was usually “That could be,” or “it’s hard to say for sure,” – both of which we found completely unacceptible!).

In addition, this doctor – who was recommended by everyone in our area and was touted as being THE expert – never offered any kind of support or anything. We were completely clueless about how to deal with this, how to help our son. Everything we learned was by our own personal research.

I would have thought this doc could have said “Oh here’s an online support group, or here’s an information sheet that lists organizations to help you, or here’s a list of books and resources, etc.” But no, we would see him for 5-10 minutes and he’d say “here’s the prescription, come back in a year.”

Soooo, I talked to our famiy doctor who wrote a prescription for K-Oz’s meds when he ran out then she started searching for a new doctor who had an office closer to us.

Now, we finally have an appointment with a doctor in St. Louis – two hours away – in March.

So I’m hopeful that this doctor will be the one we need.


So what is normal anyway?

When I was pregnant with my first child (K-Oz, who is now 11), we decided not to find out if we were having a boy or a girl. We wanted to enjoy the mystery of not knowing.

People would ask “Are you hoping for a boy or a girl?” and I’d always reply that I’d take whatever God sent to us. Often that comment would be followed by the other person  replying “Oh sure, as long as the baby’s healthy.”

I would think long and hard on that statement. I decided eventually that I didn’t like that statement because I would love this child with every ounce of my being whether he or she was perfectly healthy or was born with something wrong with them.

When I prayed for a child, I never asked for a whole, perfect child, I simply asked for a child – one that would be imprinted upon my heart.

Right after our son was born (surprise! It was a boy!) there was another young couple who had a son a couple of months later. He was born with severe craniofacial deformities and other serious problems. She told me later that nothing had shown up on the ultrasound or any of the blood tests. They had no idea there was a problem with their baby – but they loved him dearly.

Now, my son has problems that weren’t evident when he was born. Other people might see him and wonder at his strange and irrational behaviors, but I only see my beloved son. Sure, he might have a few glitches here and there – but hey, who doesn’t?

Just because K-Oz doesn’t fit into the world’s idea of “normal” doesn’t mean there is anything wrong with him.

I know other parents who have children with no disabilities or problems see parents of special needs kids as sad. But I prefer to think that God entrusted these special, precious children to the parents best suited to care for and love them.


Sickness sidelines everything

I, and everyone else in my house, have been sidelined by a nasty stomach flu that has swept through the ranks toppling one at a time.

It started with my youngest, Rubenstein, then after a couple of days it went on to my other two, K-Oz and Mim, then after a couple more days if hit me – hard. I was out of commission and bedridden for one whole day then took the next two or three to try to feel better.

This sickness holds on for dear life and everyone in my house has been cranky, tired and not quite themselves.

K-Oz had to miss at least one day of his medication (due to vomiting) which meant that we had a rough day afterward.

If he doesn’t take his medication he has a lot of breakthrough tics, is highly emotional (more than normal) and is simply out-of-sorts.

I can tell he hasn’t felt great lately because his breakthrough tics get stronger and more noticeable. He’s been doing a lot of “a-hmm, a-hmm’s” the last few days and shuffling his feet on the floor. Those are some simple tics/OCD things he does quite often.

Oh well, at least our sick week happened BEFORE Christmas and not during!


Allow me to tell you about myself. . .

I’m Tammy and I’m the new writer for this blog about being a special needs parent.

I have three children (whom I homeschool) and my oldest – 11 year-old son K-Oz – was diagnosed with Tourette’s Syndrome when he was seven.

He first started exhibiting symptoms at the age of six. With TS, to receive a diagnosis, the patient must exhibit documented verbal and physical tics for a period of one year.

K-Oz started out by shaking his head – in a woodpecker-fashion. This head shake quickly turned into a full-body spasm of head shaking that would occur every couple of minutes. It was impossible for him to function.

He was complaining of constant headaches – from the head shaking – and he was also exhibiting verbal tics.

Most people when they hear “Tourette’s Syndrome” think of an aspect of TS known as coprolalia – uncontrollable shouting of obscenities. A small percentage of people with TS exhibit this. Most have other types of tics – but it’s the obscenity-shouting that gets all the attention in movies and television.

K-Oz exhibits an aspect of TS known as echolalia – where he will repeat things multiple times. It’s almost like a record (for those of you old enough to remember those!) that gets stuck and plays the same portion over and over and over again until it gets on the right track.

K-Oz will often repeat a word of phrase over and over – especially if it was at the end of a sentence that he or someone else has just said.

For example, I could say, “K-Oz, let’s get some french fries,” and then he might (under his breath) say several times “French fries, french fries, french fries, some french fries, fries, french fries.”

Yes, TS does have a lot of Obsessive-Compulsive Disorder components. K-Oz has OCD that is considered comorbid with his TS, as well as ADHD. That is common. TS patients often have OCD, ADHD and other special needs. K-Oz also has sensory integration issues, which have gotten much better as he’s gotten older.

So that’s a little about my journey into being a special needs parent. I’ll be sharing more later.

I hope this blog becomes a place where parents of these precious children can find support and strength from each other’s journeys.

Have a joyful day!

T.



Friday Share

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Organizations

MAAP Services for Autism, Asperger Syndrome, and PDD
P.O. Box 524
Crown Point, IN   46308
info@maapservices.org
http://www.maapservices.org/
Tel: 219-662-1311
Fax: 219-662-0638
Autism Network International (ANI)
P.O. Box 35448
Syracuse, NY   13235-5448
jisincla@mailbox.syr.edu
http://ani.autistics.org/

Related NINDS Publications and Information

  • NINDS Autism Information Page
    Autism information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS).
  • Autism Fact Sheet
    Autism fact sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS). Prepared by:
    Office of Communications and Public Liaison
    National Institute of Neurological Disorders and Stroke
    National Institutes of Health
    Bethesda, MD 20892

I have found Autism/Asperger’s Digest magazine put out by Future Horizons a great find. Check out: www.FutureHorizons-Autism.com 

Blog by adult with Asperger’s:  http://blogs.psychologytoday.com/blog/aspergers-diary

Blog by PhD and author /organizer with GREAT college tips: http://welkowitz.typepad.com/

Blog by mom of 12 yr old with Asperger’s:  http://badanimal6.blogspot.com/


Ways and Means

Is there any treatment?

The ideal treatment for AS coordinates therapies that address the three core symptoms of the disorder:  poor communication skills, obsessive or repetitive routines, and physical clumsiness.  There is no single best treatment package for all children with AS, but most professionals agree that the earlier the intervention, the better. 

An effective treatment program builds on the child’s interests, offers a predictable schedule, teaches tasks as a series of simple steps, actively engages the child’s attention in highly structured activities, and provides regular reinforcement of behavior.  It may include social skills training, cognitive behavioral therapy, medication for co-existing conditions, and other measures.

 The information above was taken from the following Web site: http://www.ninds.nih.gov/disorders/asperger/asperger.htm

In addition to the rather vague information above, many parents swear that addressing nutritional issues surrounding digestive complications is the key to success. From the following Web site:  http://www.nativeremedies.com/ailment/aspergers-syndrome-asperger-disorder.html

Evidence has shown that there may be certain ‘triggers’ which precipitate the condition, including environmental factors like pollution, food intolerances (particularly to foods containing wheat, gluten, sugar and dairy products), digestive problems, and even childhood vaccinations (particularly the MMRI).

There are also suggestions that Asperger’s Syndrome may sometimes be linked to high levels of Candida in the stomach.

 

On a personal note:

You would be hard pressed to recognize Tim as having Asperger’s. That’s because he was identified at three years old, and we worked and worked with him. Homeschooling for a couple of years really saved him for internalizing that he was ill behaved, and the extra nurturing didn’t hurt. I was always in his face – that seemed to get his attention and force him to study my facial features. I also taught him several coping techniques. When you start them young they believe what you say. my son believed me when I taught him that everybody starts out as a beginner and makes mistakes. He believed me when I told him that sucking pepermints calmed his nerves. He believed me when I said smelling homegrown roses started his creative juices flowing.  He had a quiet space he could retreat to at any time.

 Another (smoother) definition:

What is Asperger’s Syndrome?

Asperger’s Syndrome is a neurobiological disorder that is classified as one of the pervasive developmental disorders (PDD). Often it may be incorrectly called Asperger’s disease; however, it is actually a condition characterized by significant impairment in social interaction as well as the development of repetitive and restricted fields of interest, activities, and interests.


Wednesday Definition: Asperger Syndrome

Because Asperger’s is on the Autism spectrum – actually considered a form of high functioning autism – here are the essential features of Asperger’s Disorder and how it differs from Autism:
Criterion A. Severe and sustained impairment in social interaction
Criterion B. The development of restricted, repetitive patterns of
behaviour, interests, and activities
Criterion C. The disturbance must cause clinically significant impairment
in social, occupational, or other important areas of
functioning.

Criterion D. In contrast to Autistic Disorder, there are no clinically
significant delays in language (eg: single words are used
by age 2 years, communicative phrases are used by age 3
years).
Criterion E. There are no clinically significant delays in cognitive
development or in the development of age-appropriate
self-help skills, adaptive behaviour (other than in social
interaction), and curiosity about the environment in
childhood.
Criterion F. The diagnosis is not given if the criteria are met
for any other specific Pervasive Developmental Disorder or
for Schizophrenia.


Monday’s Child

copy-of-dsc07612_edited-1.jpg  This is the face of Asperger’s Syndrome. My son, Tim, is a 16 yr old junior who, although he has the diagnosis, is in the National Honor Society and excels in music singing in the adult community choir with his bass voice and placing all state in the school choir. He is also a talented tuba player in the high school band. He composes his own tunes on the piano, and plinking on the piano is a sourc of relaxation for him. Although social skills came later and were more difficult for him he is well-liked by his classmates and makes friends easily. He has great compassion and enjoys a sense of humor. He wants to be an oral surgeon or a band director and is capable of becoming either. His success is due, in large part, to early diagnosis (at 3 years) and intervention (I homeschooled him in 3rd grade and in 6th grade I took him to school only for band, social skills therapy and lunch).  It is suspected that Thomas Jefferson and even Bill Gates are “aspies.” Let’s hear it for the (mainly) boys!!!


Friday Share – Donny Osmond

donnyosmond.jpgDonny’s Thoughts About SAD (Social Anxiety Disorder):

…”Once the fear of embarrassing myself grabbed me, I couldn’t get loose. It was as if a bizarre and terrifying unreality had replaced everything that was familiar and safe. I felt powerless to think or reason my way out of the panic.

…”I kept trying to remember the words, but they slipped through my fingers like mercury, defying me to try again. The harder I tried, the more elusive they became. The best I could do was to not black out, and I got through the show, barely, by telling myself repeatedly, ‘Stay conscious, stay conscious.'”

…”Being in show business, it was embarrassing to come out with this disorder, which at the time I didn’t even know what it was called. I just thought I was crazy. I can’t even tell you how important it is to know that you aren’t alone and others have suffered and gotten through it.”

 Many celebrities suffer from anxiety disorders including Johnny Depp, Barbara Streisand and Barbara Bush. The above information was taken from About.com.

Listed below are some blogs and websites to visit:

written by a mother of a teen who suffers from panic attacks: alifeoftriggers.blogspot.com

http://www.social-anxiety-shyness-info.com/art/sad/anxiety-attack-symptoms.htm