Living in a Sensory World, Without all your Senses.

What is Autism? Many know, many think they know but most have no idea. I’m no expert and most of what I know is basic except for what my son deals with. He is considered High Functioning Autistic and has been labeled as such since he was 3 years old. Elias is 5 now, about to turn 6 in April and I’m questioning his diagnosis as I did the first time I heard them say the word. 

My son was born in April of 2004. But he didn’t come easy. I had high blood pressure and my doctor recommended I be induced a week early. I wasn’t happy about this because it didn’t prepare me the way I wanted to be prepared. I was terrified of giving birth and thought when those contractions came…I would have no choice but to be ready. Nevertheless, the High Blood Pressure scared me into agreeing. This was my first mistake. 

I was a big momma. I hadn’t gained the normal 25-35 lbs. I gained 75 lbs. They thought my son was huge and before they began the inducement, the ultra sound tech figured my son to be at least 10 lbs. That morning, my contractions began and I told my doctor I didn’t think I needed the Pitocin they were about to give me. He didn’t seem to care so I went along with it. This was my second mistake. The Pitocin started around 10am and I began Hard Labor pushing at around 8pm. I pushed and I pushed. In fact, I pushed harder then the strength of my contractions. The pain was unbearable and the Nurse was a joke. My doctor was no where to be found. By 10pm, I was worn out but pushing I was and little Elias wasn’t budging. Then 1130pm came around. By now I wanted to kill myself. I believe I was screaming, “Please just kill me”. The pain, the pain, the pain! My doctor showed her cute little face and I believe I fantasized of punching her lights out. She said that if by Midnight he wasn’t down, I was going to have a C-section. I was watching that clock like an eagle! I couldn’t lay still, I remember tossing from side to side and I even dislocated my husband’s thumb thru the process. FINALLY, sometime after midnight, the doctor came in to tell me I was being prepped for the surgery. My anesthesiologist came in and had a look of shock when he saw me screaming and crying. I remember him saying something like, “Don’t worry honey, I’ll make the pain go away”. I don’t remember much after that. My son was born and I remember my husband saying how beautiful he was. Then I began screaming in pain because I could feel them sewing me up and it was like a movie. The anesthesiologist came above me with a mask and light’s out baby! Elias was born at 1:22AM on the 22nd of April. He wasn’t 10 lbs! He was 8 lbs 7 oz and only 19 1/2 inches long. But strong he was. In recovery I held him and he lifted his head on his own to reach for milk. The nurse was amazed, I was too drugged to realize. 

2 Weeks old

So, what the hell does this have to do with my son’s condition? I think it has a lot to do with it. My son was wide-eyed from the moment he was born. Always looking at everything but me. He couldn’t sleep alone, it seems he needed that touch. The moment we put him down, no matter how soft and gentle we were, he would begin to scream. After 3 months of sleeping between us, we began to move him to the crib. It took months. We would have to rub his back and try to sneak out when we were sure he was asleep. Sometimes it worked, most the time we were running back in to start the process all over again. This lasted until he was almost 4. At his two-year wellness appointment, his Pediatrician was concerned. He wasn’t saying more then 5-10 words. He wasn’t even saying “Mommy”. We had therapists come to the house and work with him. They concentrated on sensory and gross motor skills. After a year, they didn’t know what was wrong and suggested we get him evaluated. We did, and that doctor thought he had Autism. I was in severe denial and 6 months later had him reevaluated by a Child Psychologist. She agreed and the label stuck. 

I moved back to the states 1 year earlier then my husband because there were no services for Special Needs in Germany after 3 years old. When I got to Colorado, I enrolled him in Speech and Occupational Therapy. It did wonders for him.  When his dad got back, his speech improved 10-fold. It was amazing. But there was also fights brewing with the pre-schools. They weren’t listening to me and in short, didn’t believe me. Usually 2-3 months later, I’d get a phone call that they didn’t know how to handle him. It was a nightmare. 

Then we moved to Albuquerque. Things were ok here until he started Kindergarten. I was fighting with the Peds Clinic to get him back into therapy and finally..after 6 months got him in. Liz is his therapist and she is a wonder. She runs Indigo Therapy  (site is under construction) and I love her! Liz believes that Elias may have Sensory Processing Disorder  and not Autism. The more I read about it, the more I’m convinced this is true. 

Elias is very social, very loving and has a thing for the ladies 🙂 He tends to take the younger children under his wing and loves adults. 

The problem is, Sensory Processing Disorder is not a recognized diagnosis…yet. Autism is. There are many facets under the umbrella of SPD. My son would be considered a “Seeker”. His Nervous System doesn’t process things as easily and therefore, he tends to be more rough, does not understand personal space and fidgets constantly. Because of this, it effects other things. He doesn’t know how to calm down, his focus is two words deep, he chews on his shirt sleeve or collar, he has to smell everything and he doesn’t understand the pain he feels is what others feel. On the plus side, he eats almost anything. It’s shocking really. He loves olives, every kind! Pretty much every vegetable, lamb, spicy foods, sauerkraut! Sometimes I watch in awe when he eats. 

Autism is a spectrum. It goes from sever cases to the opposite side. There was talk of sensory issues being included in the criteria of Autism but I don’t believe that has happened yet. Most people, including our lovely educators out there have no clue what Autism entails and most, when seeing my son, deny that he is Autistic. But if you look at High Functioning, many of Elias’ issues fall under that label. 

Before Elias, I thought most of these issues that children deal with were bullshit. ADD, ADHD, Autism…all of them. Well I’m here to tell you, they are not. ADD, ADHD and SPD are very similar and make complete sense when you think about it. How many of you can’t sit still during a meeting? Have to tap your toes or click the pen constantly or tap that pencil? How many shift in their seat? I challenge you, at your next meeting to watch other people and see what mannerisms they have. You may be surprised. But what does that mean? It means that their Nervous system is getting too much or not enough of something. These little ticks we have subconsciously help us deal with it. A child who has ADD, ADHD or SPD has the same problem but it’s more severe. You may think we have 5 senses, but we have 7. Smell, touch, taste, hearing, sight, vestibular and proprioception. Children are either Hypersensitive(Avoider) to any of these or Hyposensitive(Seeker). 

Micheal Odent  believes that C-sections, especially emergency c-sections may be having a long-term effect on our kids, more then we realize. Its a fascinating read and also talks of allergies and Anorexia (A disease he believes to be the female version of Autism). Though I can’t write a book on here, after all the research I have done, I have to agree that what he has compiled makes sense. 

I plan to continue this discussion on here and hopefully enlighten the unenlightened. I’m here to tell parents of Special Needs children that it is ok to panic but there is help out there, progress can be made but don’t fight it. There is no use for that and it only ends up being counterproductive. 

There are many theories, some I don’t believe. I don’t think that vaccines are the issue and feel that some parents are forcing it so they have a point to finger at. I think this is more complicated but still, we may have someone to blame. Doctors mostly. I feel that C-sections and inducing has become a way of life. Yes, there are times it is needed, but these days, it’s like the “easy” way out. 

I feel like this post is a little discombobulated but the information out there is strenuous! Which is why I will touch on this subject again and be a little more concentrated on certain aspects. It’s easy not to believe when it isn’t your child. But Elias is mine and everyday I pray he gets better, that he doesn’t hurt someone at school and that he learns what he needs to make it outside mommies protection. 

March 2009

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The Death of my Grandfather…whom I barely knew.

On the 22nd of March 2010, my grandfather, Jackie Mills, passed away.
He was 88 years old and his life was anything but boring.

I barely knew him, knowing as a child that I had met him once as a baby. When I was 10 or 11, him and his wife at the time (He has had many), moved to Denver from California. This is what I would consider my first meeting and he was nice to my sister and I. He had a beautiful house in Cherry Creek which made my jaw drop. I won’t say we grew up poor cause it sounds so cliché these days but we grew up appreciating the little things. This house wasn’t little and I’m sure I was in awe. We were invited to stay for a few days. I have pleasant memories of this stay to a certain degree. His daughter was there, who is my age and I’m not sure she liked my sister and I too much at the time.(As a sidenote, I have since, very recently written back and forth with her and she is very nice!) My Grandpa’s wife, Janie, I’m pretty sure didn’t like us at all. We didn’t know it at the time, but apparently the few days we were there was too long and my parents received a very early phone call one morning letting them know we were ready to be picked up. That’s the last time I ever saw him.

This isn’t all I know of him though. My Mom didn’t have much of a relationship with him either but she knew him and his history and I used to love the stories.

You see, many people don’t know that I am a descendent in a short line of brilliant musicians and singers. I can’t give you exact dates or exact circumstances, I can just tell you the broad range of stories I have been told over the years.

My grandfather, Jackie Mills, was a jazz drummer. He grew up in Harlem, NY and from what I have heard, started very young and got recognition quite young also. He started his own band and in this whole process, somewhere in the late 40’s, met my Grandmother. My grandmother was a singer, Jackie was playing the drums with the Desi Arnaz Band. I’m making assumptions on dates here because I know what year my mother was born and I know how long Jackie and Grandma were married. They wed, they had my mother in Manhattan and then things turned not so good. When my mother was 3-ish, they divorced. Apparently, it was hard to keep the women away or hard to keep him away from them(and I think I’m being gentle in saying that). I won’t fault him for it and I have nothing to forgive. It was the way he was and the biggest thing that sucks about it is I’m sure my grandmother was heartbroken and my mother lacked her father being around most of her life.

I know there was plenty of stories in between here but we’ll skip back to my mom. Sometime when she was 16 or 18…I don’t know why I can’t remember…it may have been both, she flew the coop of her mom’s and went to live with Jackie in California. She has a million stories about who she met, what she went through. She worked at Jackie’s music studio, Larrabee Sound Studios. She met some of the greats before they were great. She met plenty of one hit wonders too. I hope this is all tying into my mom’s obsession with music and her new (Shill Alert) Coasters!

EDIT: I need to correct the below statement. Jackie did not help her get to Japan though he did meet with Tokyo Productions to make sure they were legit. My mom was a singer and a good one and I’m sorry to say that my memories aren’t serving Jackie as well as I thought. He was in the music business but not once, did he hear her sing. My mother called agents for days trying to find her own way when this opportunity arised.

In the end, when my mom was in her early 20’s and before I was ever a glint in her eye, Jackie did something for her. He got her a singing gig, (yes my mom sings too), in Japan. My mother sang for 6 months in some of the coolest described clubs I’d ever heard of or have ever seen. She told stories of showing the Japanese little ladies how not to take shit from the mean men who thought they could have their way with them. She was a contemporary  Susan B. Anthony. There would be no women’s suffrage if my mom had anything to say about it! And then my mom came home and through a slew of strange events, she met my Dad and fell instantly in love, never to return to Japan again.

I know little things here and there. The stories of both my Grandma Perry and Jackie are many. I’m not going to lie and say I’m “Sad” that Jackie has passed away but I am sad that I never really got to know him. I never wanted anything from him, never needed anything but love of a Grandpa. I was lucky enough to have my father’s dad who had his own hiccups and issues in life but as children, we never saw the other side. He was just my grandpa and I loved him and miss him.

My mother has 2 half brothers, a half-sister, a half-sister who had no interest in knowing Jackie and a son whose claim to fame was he didn’t belong to Jackie. One may never know the truth. If any distant family, who I have no relationship with, happen to read this…please take no offense. It’s all I know. There are bad stories and good stories and I think I have told truths and no lies. I have been gentle when I could scream and yell a battle my Mother never fought.

He could’ve had class….he coulda been a contender. But that’s all it is..a coulda, woulda, shoulda of could have beens but never was. I was forwarded a letter today about his passing and what a wonderful, devoted person he was. I wouldn’t have known….

My grandfather playing with Tommy and Jimmy Dorsey (He’s the drummer):

Jackie, My Mom, and David (mom’s half-brother)

Jackie Mills, you were a wonder; A wonder on the drums, a wonder to your close family and a wonder of my imagination. R.I.P.

ADD: I found a very recent interview with Jackie. Makes me sad that he was never able to share such stories with me or my sister.

http://www.namm.org/library/oral-history/jackie-mills

Where’s Maddie?

FindMaddie.com

I’ve been avoiding this story. When you have children of your own, especially the same age as a child in the news with an uncertain fate, you can’t help but conjure up horrific images in your own mind of the “what if’s”.

Children go missing everyday. In search of numbers on the internet, I have found only statistical numbers for 2000. In that year :

  • In 2000 – 876,213 missing persons (adults and juveniles) were reported missing to the police and entered into the FBI’s National Crime Information Center (NCIC) computer.
  • For the fifteenth time in the eighteen years since the passage of the Missing Children’s Act in 1982, the number of missing persons reported to the police increased. The 2000 reports were up 1% over 1999. The total increase since 1982 is 468% (154,341 entries in 1982 vs. 876,213 in 2000).
  • The FBI estimates that 85% – 90% of missing persons are juveniles. Thus, in approximately 750,000 cases (or 2,100 per day) the disappearance of a child was serious enough that a parent called the police, the police took a report, and the police entered that report into NCIC.
  • In 1990 Congress passed the National Child Search Assistance Act, mandating an immediate police report and NCIC entry in every case. Since 1990, NCIC missing persons reports have increased 32%.
  • The primary NCIC categories in which missing children reports are entered are:
  1. “Juvenile” – 685,617 cases, up .2% over 1999 (police enter most missing child cases in “Juvenile”, including some non-family abductions where there is no evidence of foul play).
  2. “Endangered” – 120,726 cases (adults and juveniles), an increase of 5.8% over 1999 (defined as “missing and in the company of another person under circumstances indicating that his or her physical safety is in danger”).
  3. “Involuntary” – 31,539 cases (adults and juveniles), a decrease of 1.1% from 1999 (defined as “missing under circumstances indicating that the disappearance was not voluntary; i.e., abduction or kidnapping”).

Here’s a scary statistic from 2006:

According to the latest online victimization research

· Approximately one in seven youth online (10 to 17- years-old) received a sexual solicitation or approach over the Internet.

· Four percent (4%) received an aggressive sexual solicitation – a solicitor who asked to meet them somewhere; called them on the telephone; or sent them offline mail, money, or gifts.

· Thirty- four percent (34%) had an unwanted exposure to sexual material – pictures of naked people or people having sex.· Twenty-seven percent (27%) of the youth who encountered unwanted sexual material told a parent or guardian. If the encounter was defined as distressing – episodes that made them feel very or extremely upset or afraid – forty-two percent (42%) told a parent or guardian. [David Finkelhor, Kimberly J. Mitchell, and Janis Wolak. Online Victimization of Youth: Five Years Later. Alexandria, Virginia: National Center for Missing & Exploited Children, 2006, pages 7-8, 33.]

And another:

· 1 in 5 girls and 1 in 10 boys will be sexually victimized before adulthood.
[D. Finkelhor. “Current Information on the Scope and Nature of Child Sexual Abuse.” The Future of Children: Sexual Abuse
of Children, 1994, volume 4, page 37.]

Most of these statistics can be found at missingkids.com

As one of the statistics above, myself, I certainly don’t want my son to face the same fate.

What happened to Maddie is every parents worst Nightmare.

This has gotten a lot of coverage, worldwide. Why? Because of the ease she was taken.

Some are questioning the parents. How could you leave your kids alone in the room?

For all those questioning, I say, “Shut Up”. You’ve done it too. Maybe not a hotel room, maybe their own room. How many times have you taken the trash out while your kids were asleep? Went and hung out in your backyard on a nice warm evening, the children sleeping safely in the house? If someone had their eye on your child, it wouldn’t matter where you were. When they are ready to try and grab your child they will. They will wait for you to make a mistake, to get complacent as we all can do.

From Court Tv’s Crime Library (A very informative site) :

The most reliable research available indicates that there are only 100-130 cases of stranger abductions a year in the

United States. These events are most frequently committed by males (86%) who are between the ages of 20 and 39 (57%). Again, the child was taken from an outdoor area in 54% of the cases but in 16% of the cases, the victim was abducted from his own yard or home.

Sometimes they are standing right next to you as in the case of Jaime Bulger, one of the most horrifying Child abduction cases I’ve ever read. (Warning, this story is highly disturbing).

My point is, you can’t have your eyes on your kids at all times.

I can imagine Maddie and her family’s day….3 kids, Nice warm day. I’m sure they were all worn out by the evening. Maddie’s parents were probably thinking about a nice quiet evening after a fun-filled but wearing day. They did everything we would of done. Checking on the kids every 15-20 minutes. That’s why this case has made Worldwide Coverage. Because in some way, we all can relate.

A couple of days ago I was stressing my feelings about the situation to my Mother.

And I told her this.

“Mom, I know this is going to sound…”Big Brotherish” and Paranoid but, If I could track my child via GPS, I’d do it in a heart beat. Wouldn’t even think twice. If it cost me a 100 dollars to call every time my son wasn’t where he was supposed to be or I feared anything, I would pay it everyday.”

Better safe then sorry. Well..to my surprise, this is actually an option.

Cell Phone companies offer GPS tracking thru your phones .

GPS-Enabled Cell Phones

The increased demand for enhanced 911 (e911) emergency calling capabilities, stimulated by the events of 11 September 2001, has pushed forward GPS tracking technology in cell phones. At the end of 2005, all cell phone carriers were required to provide the ability to trace cell phone calls to a location within 100 meters or less.

To comply with FCC requirements, cell phone carriers decided to integrate GPS technology into cell phone handsets, rather than overhaul the tower network. However the GPS in most cell phones are not like those in your handy GPS receiver that you take hiking. Most cell phones do not allow the user direct access to the GPS data, accurate location determination requires the assistance of the wireless network, and the GPS data is transmitted only if a 911 emergency call is made.

Also BrickhouseSecurity.com  offers GPS & Locator tracking devices for younger children and older :

From the site:

When the individual leaves a user-defined range, an alarm sounds on the portable Base Unit carried by the parent. The Base Unit can be put into “Find Mode,” used to assist in directing parents back to their children. Each Base Unit can monitor up to 4 tamper-proof Bracelets simultaneously, allowing up to 4 children to be monitored from a single Base Unit. Additional bracelets sold separately.

If the tamper-proof Bracelet is removed from the child’s wrist, a tamper alarm sounds instantly at the Base Unit to alert parents. Because the ionKids Child Monitor & Locator signal is not transmitted via cell towers, there are no recurring monthly charges. For added peace-of-mind, this unit comes with a 1 Year Factory Warranty against product defects.

Other websites I found for GPS tracking:

GPSNanny

911togo

IsaacDaniel Online (He created GPS shoes for adults ) Very Cool! A Children’s line is coming soon.

Maybe you think this screws with the trust between children/teens and adults or you’re thinking of Privacy issues. But when it comes to your kids, Privacy isn’t as important as keeping them out of the hands of a killer or sex offender. And Trust, well with teens, we’ve all been there. Could we be trusted? Not completely and you know it! If your teen gives you reason not to trust them, why not GPS them? Most teens won’t ditch their cell phone. 🙂

Think about it. Thinking that, “It could never happen to me” is not an answer. I’m not being pushy, but think about the possibilities of having this technology. And think about not having it, if your child goes missing.

UPDATE: Christopher and Channon

Your voices have been heard! Bill Hemmer talked of the case on Fox News this morning. The details were limited but…at least it got out there. Hopefully this will be a snowball effect!

Blogging and writing the major news outlets will get this story out there.

Nothing to link to except the old wire stories… But I’ll keep my eye open.

I see Animals

This has got to be one of the coolest things I’ve come across in a long while.

Pantheon Vinyl Wall Art. Designer: Studio Job, France

When I was young it was the “glow-in-the-dark” Stars that we pasted all over our walls.

You’d keep the light on for as long as possible to charge your stars and…. FLIP! A personal Galaxy all in the comfort of your own bedroom.

The animals don’t glow. Yet, I imagine myself as a little girl again, looking up at my ceiling. The animals would probably talk and invite me to dance around the ceiling with them. They’d protect me at night from the boogey man or the monster hiding under my bed. They’d keep me company when I was lonely or scared.

It seems to me this is a gift for the imagination.

Panthéon circle black   via Domestic.fr for 106 Euro (OUCH). Right now that’s $147.

Thanks to some searching and Katie at bltd.com, she found them here for $58!

But, they are only 20″ x 20″ where Domestic has them at 150cm x 150cm.