THAT Mom...

I had the pleasure of becoming personally acquainted with Jo Ashline this past year. I'm counting her as one of the many gifts I've received.  We periodically exchange messages and/or phone calls. Typically, I'm seeking HER guidance to avoid offending people or to understand some of the history involved in the evolution of how we, as a community, view autism.

Over the Thanksgiving holiday, we exchanged messages and I told her that I was thankful for our friendship. She replied with the same sentiments and added that our friendship gives her strength - that I made "autism seem a little less scary."  Her words stuck with me and I started to ponder the 'autism times' that were the most challenging and fearful for me.

As I reflected back to the day Mike was diagnosed, I think the biggest shock was where we were as a society. It was 1997, I fully expected that our country cared about and provided for our most vulnerable citizens. As it turns out, I walked away with little more than a diagnosis and a 'good luck'.  

There were no programs or therapists within a 50 mile radius, and there was NO FUNDING. The two-year old, who had FULL medical coverage was denied treatment for his autism.

For the love of my child, I fought, lobbied, volunteered, walked, read EVERYTHING about autism, spent money I didn't have, and even became certified in several therapies along the way. I made many new friends and we faced the challenges together. We accomplished some wonderful goals and we did WHATEVER was necessary to help our children.

Mike has received EVERYTHING I believed would help him. I NEVER allowed anyone to deny him. I simply REFUSED to accept less than what he deserved. There are people who despise me and I couldn't be happier about it! There have been times when I knew I had made a friend, simply by sharing the same enemies. I intuitively knew that she was MY kind of mom. Many of those friendships continue to this day.

While I've shed a million tears about autism, and I'm sure I've got a million more to go, I've NEVER questioned 'why'.  I've never wondered why I was the mom.  The ONE mom out of the 500 (rate at the time) moms who delivered babies that day. The mom who left the hospital with an unknown destiny -autism.  

Knowing what I know today, I can assure you that if given the choice, I would still take the child with autism. Not because I LOVE my son or I'm amazed at how beautiful their minds work. Not because of their innocence or unique perspectives. I would take the child because I know what I have done for my son and countless others. I'm a fighter and I will not excuse people from doing what is right for EVERYONE with a disability.  I will not tolerate discrimination or the dismissal of people, simply because they have different challenges. 

My eyes are WIDE open to the lack of compassion and misunderstanding that exists in our society.  There is NO turning back for me. You see, as I replied to Jo, it was never the autism that scared me - it was the possibility of losing the fight.  The possibility that my son and countless others could benefit from treatment that they couldn't receive. The possibility that someone would deny my son an opportunity to reach his potential. Those were my darkest days and my biggest fears.

As Mike transitions to adulthood and adult services, I'm scared, not so much for Mike but for our community.  I'm scared to see that we are facing an epidemic number of young adults that we are not prepared for.  I'm heartbroken for the countless adults with disabilities that are spending their days and nights sitting in group homes. I'm appalled by the funding that is provided to care for adults with disabilities. I'm scared for my son's longterm future and the generations that are following him.

I've often posted that if you don't demand that every person with a disability have the right to a respectable life, you can't expect one for your child. If we, as parents, family members, and as a community are able to turn our backs on the adults that are in need, who will care? Who will care for OUR children when we no longer have the ability to fight?

During this holiday season, I encourage you to reach out within your community. Find a way, no matter how small, to make it better. Send pizzas to a group home or adult day program - thank the staff who care for adults. Remind them that their job is valuable and that you admire their commitment.

When the holidays are over, I challenge everyone to fast forward their own lives. If your child were entering adult services TODAY, what would you be facing?  If you are, as I am, scared at what you find - DO SOMETHING ABOUT IT!!

THE MONEY GAME

Have EACH of your guests brings the following to play:

(Make sure they use SECURITY envelopes – NO CHEATING)

($25.00 per player – adjust to YOUR budget)

-       

-       Envelopes filled with the following: 

•      1 Envelope filled with a $10.00 bill
•      1 Envelope filled with a $5.00 bill
•      10 Envelopes filled with $1.00 bills
•       3 Envelopes with blank slips of paper

Place everyone's envelopes in a basket.  The basket is passed around and each player selects ONE envelope per round. (Have someone hold the basket high – so the player selecting can't see what s/he is choosing.)

In addition to the above mentioned envelopes, add envelopes containing the following messages. 

• Skip a turn
• Trade you money with the player who has the most money
• Trade your money with the player who has the least amount of money.
• Give 3 players $1.00 – if you don’t have $3.00, take $5.00 from a player.
• Take $1.00 from every player who is younger than you. If they ALL don’t have $1.00, give each player that is older than you $1.00, until you run out of $$. 
• Get 3 players a drink.
• Trade your money with the player on your left.
• Take $1.00 from 3 different players.
• Give 3 players $1.00
• Pick two envelopes on your next turn.
• Pick two players to trade their money.
• Take $1.00 from every player who is older than you. If you are the oldest player, give the youngest player $5.00.
• Take $5.00 from two players.
• Take $10.00 from someone.
• Give $5.00 to a player. If you don’t have $5.00, take $2.00 from three different players.
• Have the player to your right trade his/her money with the player to your left. 
• Every player gives you $1.00
• Trade a $5.00 for a $10.00, from the player of your choice. If you don't have a $5.00 bill - Trade a $1.00 bill for a $5.00 bill.  

Make up messages to fit your family. We add 2 or 3 envelopes with the same message – depends on the number of guests you have. The more rounds you play – the more fun!

If Money ‘Game’ Envelopes are picked during the FIRST round or before players have money, we typically put them back and pick again. IOUs & loans are permitted!!

Make up rules and messages to fit your family - ENJOY!!

        

Doctor Note for IEP Meeting

To Whom it May Concern –

(insert name here), is a patient in my medical practice.  He/she has recently been diagnosed with an extremely rare form of  Situational Tourette’s Syndrome (STS). 

This rare form of STS is a neurological disorder characterized by involuntarily shouting and obscene vocalizations during stressful situations.  In some severe cases, patients have also exhibited involuntary hand gestures, clenching of teeth, pacing, name calling, eye rolling, heavy sighing, ripping of paper, and an excessive use of sarcasm.  

While the research into this disorder is still in its infancy, we are seeing some commonalities among our patients.  The early data is indicating that the disorder is occurring exclusively among parents of children with autism.  Further research is indicating that the most severe STS ‘outbursts’ are occurring during IEP meetings.

As you are aware, the Americans with Disabilities Act (ADA) prohibits the discrimination of individuals on the basis of their disability.  As professionals, I’m certain that I don’t have to remind you that ANY of the above mentioned ‘outbursts’ must be ignored.  Any attempt to retaliate against my patient, or my patient’s child, based on their outbursts WILL result in legal action.

Regards,

Autism Hippie, MD 

(Feel free to present this at your next IEP meeting - being an autism mom qualifies me as a doctor.) 

I NEVER Worry About Mike Being Left Out

I never worry about Mike being left out of parties - I'm always too busy hosting our OWN, BETTER PARTY!!

For the past four years, we have hosted a 
Trick-or-Treat party for 

our school's Raider Buddies group. Our group averages approximately 

50 ESE & typical students, teachers, 

parents, and friends. 

To ensure a successful and EASY party, I have streamlined the organizations. Here are some of MY helpful party tips:

* Send invitations EARLY and OFTEN, especially if you're dealing with high school kids- typically the first week in October. (I've included a copy of MY flyer) ...

* DON'T LEAVE ANYONE OUT!!  If you have students living in group homes, as we do - arrange transportation/carpools EARLY. Oftentimes, proof of insurance is required to transport students that live in group homes. (It's very simple - just don't wait until the last minute.) I actually invite the entire group home to participate. Last year, I had a developmentally delayed 39 year-old woman who Trick-or-Treated for the first time in her life.  She talked about it for MONTHS! 

* Seek donations for Trick-or Treat bags - some kids will show up without them.  My grocery store hosts a Halloween event and is HAPPY to supply our group with bags.

*  Make sure EVERYONE has a costume. I typically keep some face paint on hand, just in case.

*  Have water bottles and stick one in every student's bag.  We are fortunate to have a golf cart follow our group.  It carries extra water and assists when students get tired.

*  Have a CLEAR pick-up time on your invite.  

* BE ORGANIZED:  I typically don't allow the students INSIDE my home for this event. If I do, they will make a mess and I'll never get them motivated to leave on schedule.  I organize the bags, water bottles and candy, on tables, in my driveway.

* To ensure that my neighbors are prepared for a group of 50 or more teenagers, I send a flyer to ALL of my neighbors, notifying them of our group (I've included MY flyer).

MY NEIGHBORS LOVE OUR GROUP!! Last year, I had a neighbor drop off candy and treats for our kids, prior to Halloween because she wasn't going to be home.  I also had a neighbor write a letter to our school board members bragging about our students.   

*  Have an adult or typical student LEAD the group.  We pair our kids up with their buddies, but assign a LEADER to notify the homeowner that your group in there. 

*  Snap a group picture and SEND A THANK YOU CARD TO YOUR NEIGHBORS! They will LOVE this and feel good about supporting our kids!

*  Invite your principal.  He/she probably won't come, but make them aware of the event. I'm hoping to get some press coverage this year. :-) 

*  Bring flashlights

Raider Buddies

Trick-or-Treat Party

YOU'RE INVITED to TRICK-OR-TREAT

with YOUR BUDDY!

At Mike’s House

XXXXXX

XXXXXX

XXXXXX

Halloween Night

6:30 – 9:00

Please come in your costume!  Bring a flashlight, candy bag, and eat dinner prior to arriving.  We will be leaving promptly at 

6:30 to Trick-or-Treat

If you need a ride or a costume, 

please contact Ms. XXXX

Dear Neighbor,

My son, Michael has autism and is a special education student at XXX high school. I have invited the Raider Buddies club to Trick-or-Treat our neighborhood on Halloween night.

Raider Buddies is a school sponsored club that encourages friendships between general and special education students.  

Please be advised that some of the ‘special students’  in our group have challenges with language and personal space.  Some of our students are very fearful of scary costumes.  We will assign a leader to notify you when group is approaching. I would appreciate your cooperation in not attempting to scare the students.  Also, taking just ONE piece of candy can be a difficult concept for some of our kids.  If possible, I would prefer that you hand the students the candy, rather than allowing them to grab a handful. 

I’m anticipating a group of approximately fifty (50) special and general education students, faculty, and parents.  They’re a wonderful group of kids – I promise they won’t Trick, as long as you give them some Treats!

Thank  you & Happy Halloween,

  

Autism Hippie

As you can see, I've done ALL the work for YOU!!  I hope I've motivated you to get involved and plan your own Trick-or-Treating party!