2 Year Anniversary: Reflections on Autism

Today is the 2 year anniversary of Sahara’s formal diagnosis of Infantile Autism.

I thought about writing about the huge accomplishments we have seen in the past 24 months… and let there be no mistake they have been huge!! We have left Catatonia in the dust!! Her speech, socialization, cognition, sensory, and every other facet of her being has exploded into this wonderful expression of life!! I am so proud of all of her hard work.

...Yes, we have come a long way, but we have an even farther way to go.

I thought about writing about the blessings I have found in the world of Autism… and let there be no mistake there are huge blessings. I have made friendships and have encountered opportunities that would have otherwise failed to exist. Read my list of blessings HERE.

...Yes, blessings are always there.

I thought about writing about the spiritual side of Autism… and let there be no mistake my daughter is more connected to God than I could ever dream of. However, I have learned to trust God more and that He trusts me even more than that.

...Yes, God is good.

I thought about writing about the fears I have endured over the past year… and let there be no mistake there are fears that I face on a daily basis; elopement, wandering, sexual predators, IEPs, civil rights, bullying, harassment…

...Yes, there are dark corners in my life.

I thought about writing about the struggles her sister has faced… and let there be no mistake that she had to face more in her short lifetime than your typical tween. She has had part of her childhood ripped away by this invisible monster called Autism that consistently puts her on the back burner.

...Yes, siblings have it rough.

I thought about writing about the strain in our marriage… and let there be no mistake there has been strain. The piles of doctor bills that insurance refuses to cover, the reduction to one income, and the never ending discussions about the never ending issues that circle our life.

...Yes, communication is key.

I thought about writing how the diagnosing psychologist was wrong is her prognosis… and let there be no mistake she was wrong! My daughter is talking, socializing and living a fulfilling life. She will go to college, have a career, a family and any other thing she so chooses to do.

...Yes, possibilities are limitless.

And as I thought about all of the things I could write, I realized that the most important thing to say today was that I would like to introduce you my daughter, Sahara Grace.

Sahara is six years old and just started kindergarten. She likes her teacher, follows directions well and declares that she loves school each time she gets off of the yellow bus. Sahara is funny, witty and even sarcastic. She loves animals, bats, watermelon, Curious George and Mr. Bean. She enjoys riding her bike, swimming and playing hide-and-go-seek. She has self determination, a sense of adventure and the patience of a saint.

Sahara’s best friend is her eleven year old sister, Emily. Not only do they share the common bond of sisterhood, they also share the passion for horses, dinosaurs, water activities, chocolate, the outdoors and just about everything else they venture to do; in fact, they are almost inseparable. Daily my daughters inspire me to be a better mother and person!

You can read more about our early journey (HERE) on the Autism Women’s Network.

I would like to conclude by saying that if you are a parent of a child that you think may be on the autism spectrum… you are not alone! Demand that someone listen to you about your concerns so that your child can start getting the services and care she/he needs. Then find a support group so you can get the care you need.

I have found that joining Twitter and Face Book to be one of the best things I could have done for ME. It was through a sense of community and knowledge that I was able to empower myself to stand up to the plate and become my daughter’s best advocate.

Read about the Signs and Symptoms of Autism HERE

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The Mason Alert: Helping Prevent Wandering & Deaths in the Autism Community

I have met an Incredible Mother, Sheila Stark Medlam, who has touched my heart. I wish I had met her under different circumstances, but here we are nonetheless… Sheila not a day goes by that I do not think about you and your son, Mason!!

I always say Autism has blessed my life with fabulous heart centered friends!

… but what if Autism and the Death of Your Child blessed you with friends?

Could you find the blessing within such a tragedy?

Would you find the strength to face another day?

Could you ever echo another laugh?

How would you go on?

How do you go on?

I do not know the answers to these questions. But I do know that by the grace of God, Sheila is turning the tragic drowning of her 5 year old son, Mason, into a much needed safety awareness movement in the autism and special needs community through the MASON ALLEN MEDLAM FOUNDATION.

Sheila told her story to the IACC this week (here at minute 157-168) and advocated for the other 92% of children with autism who wander. Listen to hear Sheila talk with The Autism Women's Network about The Mason Foundation HERE.

You can listen to more statistic and stories here starting at minute 47.

This is why I personally haven't slept in 6 years... My daughter has slept in my bed with one of my hands on her back at all times out of fear of her fleeing into the night despite door locks and chains. Recently, I decided to give her some autonomy; she woke up in the night and removed the screen from her second story window. I thank God nothing tragic happened that night, but I know the risk is always there!

There have been times that she has fleed from the home during the day. She has been found in a tree house naked near a neighbor’s pool, behind houses and trees. Our children do not respond like typical children. Many are non-verbal and do not respond to their name when called. Many are attracted to dangerous situations like water, railroad tracks, streets and animals. … And because these children have an invisible disability they are very vulnerable to predators.

To learn more about some tools to help protect your loved one visit AWAARE… Working to prevent incidents and deaths within the autism community!

In Pensacola, FL the Take Me Home Program was created through the combined efforts of Officer Jimmy Donohoe and the Police department's Software provider. Basically, it is a system designed as a registry that has a photo of theat risk child or adult who is prone to wandering, some basic information about the person, and where they live.

Just 89 Days after Mason’s death, Sheila learned that they would be willing to make changes to the this already FREE program to incorporate the MASON ALERT information including:

A current picture of the child.

Child's address and Contact information.

Their facinations: i.e. railroads, small spaces, water

Locations of all nearby hazards such as tracks, pools, ponds, abandoned houses, busy intersections.

Notify if the child is verbal or nonverbal. This is very important, because when we search for someone, we tend to stand in one place and shout the person's name. A nonverbal child won't respond to this AT ALL. When I arrived home, the police were shouting Mason's name. I could have been standing right beside him, shouting his name and not gotten a response.

How the child reacts under stress. i.e. do they hide, do they run, do they fight, do they shut down and just stand still.

And finally, how to approach the child and who needs to approach the child. In some instances, authorities will just have to immediately react if the child is in immediate danger, but in other instances, it might be better to wait for a parent or caregiver, and taking this step might help eliminate danger.

I encourage everyone to contact their local law enforcement to inquire how to implement this program. In the mean time, please sign the MASON ALERT PETITION.

Sheila,

I am deeply sorry for your loss. I will not pretend to know your pain, but I do intimately know the raw fear that took your precious boy. Please know that I am honored that you have found the strength to advocate for my daughter and the other children and adults who wander in our community...

You are right politics should not have prevented someone or some organization or political structure from doing something to prevent Mason's untimely death!! You have an entire community grieving with you and holding your hand as you advocate for our loved ones! My daily prayers are with you, Mason and your entire family!!

Susan

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An Autism Halloween Adventure: Beggar's Night, The Lost and Not Found, & Nerds at the ER

I LOVE Halloween… I always have… constructing the costumes, organ themed music, bats and black cats, haunted houses, pumpkin patches and beggar’s night… SCREETCH… BEGGAR’S NIGHT… THAT IS WHERE OUR STORY BEGINS (and hopefully ends)!

This year was just as ordinary, yet profound. Let me explain, about 2 weeks ago Sahara started asking, “Trick or Treat, Yes?” Which is easily translated into, “Can we go Trick or Treating Now?” Up until this moment in time she has shown little to no interest in this particular activity nor has she had the speech to ask for it in advance… all huge milestones. So we created a visual aid to help her count the past 15 days… the excitement was building as we approached Beggar’s Night.

All morning she repeated her daily schedule over and over until she got to the part where she said, “Trick or Treat, Yes?” and would look at me with anticipation to confirm that today was the day! “Yes,” I would excitedly repeat, “after school… pizza… then trick or treat!” And she would smile and say, “Okay!”

[Fast forward… to the main event]

As we were getting ready for the big event, Sahara eagerly helped with her costume assembly… which the girls had helped me for the past 2 months construct… Golden Skirts and Tops with Egyptian Hieroglyphics sewn along the hems, head bands with golden coins dangling across their beautiful foreheads, with white capes… at the last minute we had to add a long sleeve black shirt and hosiery to keep warm. They decorated their already beautiful eyes with thick Egyptian black lines which turned into fancy swirls and golden (yellow) eye shadow.

The girls danced around me and wrapped me with toilet paper and drew even darker circles around my already tired eyes. Daddy threw on all black clothes with a golden sash… okay, that one was lame, but we ran out of time with our “Egyptian Family Theme” and his costume took the brunt of it. (Honestly, I don’t think he minded at all.)

So, it was cold and windy… but we trailed along in awe over the moment of normalcy both children were partaking… I say “both” because although Sahara was fully participating joyfully, cognitively, and with cleverness (she was successfully focused on how many Hershey bars she could capture tonight) … Emily was also indulging in a children’s activity without worry, and domination (which is partly the result of having a special needs sibling… she is always the one to control a situation in a life full of events that she has no control over). Laughter filled our little family bubble!!

Emily exclaims, “Look Mum your family tree!” as she points to a tree that had been toilet papered. Even more laughter…

[Fast forward to the last house]

Emily is chatting and smiling about how Sahara got more candy because she didn’t understand the rules of taking one piece… and I am laughing not only because what she is telling me is true, but because we are having a carefree moment... Then suddenly I hear a faint “CLINK”… I snap my head up and she says, “Your wedding ring!! IT’S GONE!!”

“What!?!?”

“It was on my finger, and now it is gone!”

I stay calm… let’s face it… I am not one of those women who need a ring on herself or ‘her man’ to identify that our hearts belong to each other… we have been through way too much together to have a piece of jewelry define our love, passion and respect for one another. In fact, that is how Emily got the ring. I haven’t worn it in 7 years (he hasn’t worn his since, well, probably our honeymoon 15 years ago). She found it a few weeks ago and thought it looked nice with her Golden Egyptian costume. I told her time and time again not to wear it outside, but to no avail she snuck it on to complete her costume. I suspect that deep down somehow having both rings (his and mine) brought her peace within her never-ending chattering mind… she has a deep need for connection with us.

[Back to the story…]

We got a flashlight from the lady at the house we just went to… NO luck! So my wedding and engagement rings lay resting upon the earth somewhere in the neighborhood… an omen? I think not! Did we punish her? I am certain that there is NOTHING I could have said or done to make her feel any more remorseful and horrible than she already felt… sometimes we are our own worse enemies… I am also certain that she fell asleep crying last night… the ring really meant more to her than I. She new someday it would be handed down to her(being our oldest daughter) and that hurts deep. We will go back out today and retrace our steps, but I am sure it is gone…

[The Loot…]

As the children went through their loot, we cringed at the amount of hfcs and dyes lying on our floor. We knew the kids would ingest more tonight than they had all year combined, which is why I always let them take the day after Beggar’s Night off from school… up late + jacked up on candy + tired = pajama day!!

Emily was still pouting about the ring while sorting, organizing and lining up the piles of candy in front of her; Daddy was upstairs changing into comfortable clothes; and I was on the phone with my sister talking when I saw Sahara dart out of the bathroom and into the kitchen. I got up to follow her and saw she had tweezers by her ear… I asked, “What are you doing?” She replies, “Ear!” “NO Sahara, we don’t put tweezers in your ear,” I see a flash in my head of her lying in my lap as Jim successfully pulled a dried pinto bean from the sensory box from her ear months ago…

HALT!

I listen to my gut and look in there… I think I see something. I quickly tell my sister I have to go and yell for Jim to come downstairs. I lay her on my lap and sure enough I can see something!! He brings me a flashlight and I see A PINK NERD in her ear… I look at Jim and say, “I don’t think you can get this one!” (Yes, that means we have done this before… why our children like to put stuff in their ears and noses is beyond me, but they do.)

[The ER…]

We have this routine down… but not when jacked up on sugar. The kids are antsy, the waiting room semi-packed full of random kids with face masks (and not the ones for Halloween, the kind you get to prevent spreading your germs). I cringe!!

The triage nurse thinks she can get the Nerd out… we say go for it!! She brings in this plastic pick like tool, swoops and… Nothing!! She tells Sahara to sit up, tilts her head and taps the other side of her head and shakes her head a bit… Nothing!! (Yes, that freaked me just a bit!) Sahara puts her finger in her ear before anyone can stop her and it went back to its original position. As the nurse confides in us that she used to work with autistic kids, she says she will make us a priority on the list to get a room.

Within 45 minutes of arriving we are escorting to a room in the ER. I note it is room 28… Emily’s favorite number... perhaps a good sign!

[Or maybe not…]

The ER nurse come in and attempts the same procedure as the first without luck… Sahara is starting to get agitated and I switch positions with my husband so Sahara doesn’t see my concern on my face. (I openly admit I am not calm in emergencies…. especially when my child is screaming in pain!) This nurse goes to get the charge nurse. When the Charge Nurse comes in she starts talking in a normal manner questioning Sahara... whom I answer for. The CN doesn’t see the nerd and starts to question us, “How do you know something is in there? … Did she Tell you? … If you did see it, what color is it?” She pushes my buttons “… just bc YOU can’t see it doesn’t make us or the other 2 nurses wrong… it is in there! We saw it!”

Nurse #1 looks again… “Yes, it is there [tells her location]”. The CN claims she sees it now and tries to swoop it out with the plastic hook… and makes Sahara’s ear bleed… Sahara is screaming, I am cringing, and Emily is repeating, “What is wrong with you mom?” Over and over again! Jim takes a deep breath and is once again our rock!!

Nurse #1 and the CN leave after discussing our options: 1) try the plastic hook again 2) flush it out with warm water… we choose 2.

[Enter Nurse #3]

“Hi Honey, what were you for Halloween?”

I snap, “She can’t answer you… she has autism!”

She handles my response well… I like her! We discuss with her Sahara’s sensory issues and our concerns about the flush. Sahara hates to get splashed with water and it will cause an instant melt down; she is already in pain, agitated, and emotionally spent. We ask her to let Sahara play with her stethoscope (one of her obsessions) to keep her calm.

[Nurse #3 leaves… Reenter #1 and CN]

“So you don’t want to do the flush,” asks the CN.

Jim impresses me with his calm, “No, we didn’t say that!! We are trying to explain the sensory and emotional needs of Sahara and what she needs to support her during the flush.”

“So, what do you want us to do?”

I ask for a surgical brush so I can brush Sahara first and they look at me like I am nuts!!

“Do you want a wash rag?” asked the CN.

“No, I want a small white surgical brush.”

“We don’t have any.”

“You are a hospital that doesn’t have a surgical brush?”

“Do you want an emery board?”

“NO!! I want a surgical brush… forget it I will just do the deep compression with her.”

“The deep what?”

(I am obviously dealing with nurses who have NO clue about autism or sensory issues. I am stunned since this is the same hospital we get all of our Autism Therapy from!)

They come back with a brush… but not the OT brushing protocol surgical brush… I tell them that won’t do. They leave and I rub Sahara’s skin hard with my hands, and then do joint compression. She seems to be calm.

[Enter nurse #3 and a new nurse #4 with a syringe that is HUGE!]

The syringe looks like it has a needle on it (it is a soft attachment to aim the water) and they start to say what they are going to do. I interrupt them and start to explain it to Sahara in broken phrases. I let her touch the syringe and tip, and she yells, “No, I don’t want to!!” The new nurse explains to us that the CN has told them to accommodate whatever requests we have, so I ask for a weighted vest.

… they look at me with puzzled expressions. I tell them to go to the dental trauma area and bring back a lead vest. They comply. After a few seconds of resting under the weight of the garment, Sahara seems calm once again. They demonstrate on me what they are going to do and water goes everywhere… down my clothes (trigger), on my skin (trigger) to the floor (trigger)… She starts to scream and thrash!!

I pray out loud for the Nerd to just pop out.

I quietly send her Reiki to relax her.

The long and short of it is… After another half hour of pain, screaming, and thrashing the nerd has dissolved from the warm water and is apparently gone. Nurse # 3 & 4 say they will send the CN in to confirm it is gone… we request someone else since we the CN couldn’t see it in the obvious position earlier. They FINALLY send in the attending doctor. He confirms that nothing is in the ear canal anymore, that the drum is red and will be sore, but otherwise she is fine and we can go home.

[When you think nothing else could go wrong…]

I tell Jim to take the kids to the car and I will get the discharge papers… after 10 minutes they arrive.

As I am walking to the jeep, I see Emily and Sahara running and crying. (Still not sure what happened other than ‘Daddy yelled at us’.) Everyone is tired and stressed to the max!! But, we all are able to calm enough to get in the jeep and head home.

… are you ready for this?

The plastic encasement on my key busted in half and the remote fell out in the dark at midnight in the ER parking lot!!

After looking for awhile I say, “F#ck it!! Let’s go…”

“Are you sure… “

“Yep, let’s just go!!”

The jeep won’t start!

Apparently you need the chip in the key remote to start the engine!!

Sahara is whining, Emily and Jim are out retracing their steps and I am trying to decide who to call to pick us up because at this point I am exhausted, my children are exhausted and my husband is exhausted and I just want to go home. I open my door to tell him to call his best friend and the remote gleams under the night post.

...the engines starts, we get fast food on the way home and everyone is zonked by 1:00 am.

[Happy Halloween!!]

Did I mention that Sahara was diagnosed with Infantile Autism on October 31, 2008? I vowed I would not let that ruin my passion for Halloween… like I said at the start of this really long (sorry it is so long) post, “I Love Halloween.”

Here are a few concluding thoughts: Yes, parts of last night sucked, but Halloween still kicks a$$! I have confirmed that I love my husband more today than ever! I don’t need a Rock on my hand as my hubby IS my Rock! My kids are making huge progress and have taught me the power of true unconditional love and for that I am grateful! And I am almost certain that all of my other jewelry is back safely in my room and that nothing else will go into the ear that doesn’t belong there.

Well, kind of, maybe certain…

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Open Letter to DQ... How my autistic daughter was abused by your employees

Dear DQ,

This open letter is to let you know that my autistic daughter was insulted, mocked and experienced defamation of character by some of your employees this evening!!

As I was placing my order, my daughter was ordering beside me as well. How ever cute that may sound (and in my motherly eyes it was cute as well as a huge milestone) it opened her up for abuse by your employees. Because of her infantile autism she has a severe speech delay and speech impediment. For the first four years of her life she was catatonic and we have worked tirelessly to pull her out of her inner world and integrate her into the community. Tonight your employees demonstrated that I need to work harder at educating the general populace!

Tonight as she ordered her ice cream next to me in her broken speech (which sounds like baby babble), one of the workers imitated her sounds in a mocking manner!! Not only was I stunned, but so was her 11 year old sister and father! When I announced we could hear them through the speaker, we heard them burst into laughter. No apology!!

When we pulled up to the window, they didn’t acknowledge the incident at all. I am my daughter’s voice until she finds her own, it is my responsibility to speak up for her rights until she can do so for herself. So I informed the worker that I heard everything through the speaker and that I would like to talk to the manager!! The worker did not deny the incident, and meekly said, “Sorry” as he closed the window. I informed the manager that my daughter is disabled and has a condition called autism. I explained to him what happened and he said he heard laughing but was not aware of what prompted the laughter… he apologized and offered me a 25% discount.

A 25% discount!! Is that the compensation for my disabled daughter being subject to humiliation?

The latest statistic published by the government is that Autism affects 1 in 91 children!! So, to you that means that every 91^st kid who comes through your lobby or drive thru is going to be autistic! Your workers must learn not only basic etiquette and common courtesy, but tolerance for those with disabilities. Is it not bad enough we have to fight day and night for the rights of our children with the schools, doctors, insurance companies and politicians… but now with the boys at the local Dairy Queen?

What those workers did was nothing more than bullying and defamation of her character. I have already told many of my friends in the autism community about this incident and many have already said they are going to boycott DQ.

I would like a formal and public apology to not only my daughter, but to the autism community as a whole. And would like to know what DQ as an entity would like to do about this?!?!

Below is the location and information on the order ticket.

Susan Richardson

Dairy Queen

2580 Bethal Road

Columbus, Ohio

Date: October 13, 2010

AIA003984099311

Server 122 Jeffery

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