Over And Over Again #MikaelaLynch

Madeline & Natalie

Whoever made the claim that words could ease the pain/ Never watched your tears fill up an ocean/ Never saw your face, the moment you found out/ That you'd have to live without, until heaven.........

To the parents of Mikaela Lynch:

In the months after my stepson's passing  I stayed away from social media. Newtown did me in. I couldn't take it. I left the internet to itself while I tried desperately to sort out my feelings.  

Madeline and Natalie

But I have other children. I had to still live my life. Life did insist on swirling around me. Our impending appointments to get both my girls diagnosed with Autism woke me up out of my funk. I had so many questions even after a year or two reading everything I could on the subject. 

Natalie and Madeline

Facebook put me in touch with so many people going through the same situation as I. As well as people who were further along down the line. 

Is there somethin' I can do other than being here for you to ease the pain/ If I can keep you from fallin', fallin' down'/ I'm sorry to sound selfish but I feel so helpless/ Is it okay if I stay here with you and cry for awhile 

Not long after the diagnosis in April, my 4 year old ran away from me. It wasn't the first time but this time she got much farther in a shorter period of time. It scared me to my core when I found her down the street in a field. 

It terrified me. 

My wee little wanderer. 

I started "liking" every page I could about wandering. 

A little time went by and then little Mikaela showed up on my feed. 

I cannot describe to you the impact your little girl made on me. It's like I saw my Natalie. 

This is how I'll always see her. 

Maybe it was the angle of her glance. Maybe it was the twinkle in her eyes or the sunny, full grin smile. As I read the details of the case it was as if someone walked over my grave. Natalie hates to wear clothes & diaper when she is hot. She's a nonverbal child with Autism. She loves to wander. Her curiosity is boundless. She's extremely attracted to water. 

Mischievous. 

I didn't share this but with one person that last year Natalie almost drowned. We were at a park by a lake. Natalie took off running and went into the lake. Even though I was seconds behind her she was caught in the current and went under. It flipped her over so I could see strait into her eyes. She was reaching out to me to save her. I ALMOST DIDN'T. This was with a life guard right there. He never moved. Both of us soaking wet..we cried clinging to each other. 

This experience has never deterred her from water. 

Over and over and over in my mind I heard, "THIS IS NATALIE."  

I shared the story with my friends as well as my fan page. Then I wrote about it. 

A short time after that I heard amateur journalist make accusations that enraged me. It enraged my fellow friends who are parents of children with Autism. 

No one really knows until it happens to them. No one really know the reality of raising children with this condition. While each child is unique...the "eloping" is a common characteristic. 

Over and over and over in my mind I heard, "THIS IS ME."

I'm you. I'm the parent of a child prone to wandering. I live near water not 200 feet from my house. 

More and more bloggers and parents took action against the speculative claims. We wanted to shield you during this time. I remained glued to the computer. I prayed so hard I thought my brain would explode from it. 

Whoever made the claim that words could ease the pain/ Never watched you fall apart, never put you back together/ When you were broken down, into a million pieces/ Scattered on the ground 

And the announcement came. She had been found. But not as anyone..most of all you..had hoped. 

Independence!!!!

It was like time stood still. I just stared at the screen and sobbed. I know it may seem silly that I felt such anguish for people I never met. I realize I must sound ridiculous. But it's true. 

When my husband came home he saw my face and knew it. He said, "They found her in the water?" It was a statement not a question. My husband is in law enforcement. He knows how many of these stories end. That night we tucked the girls in our bed and hugged them into the wee morning hours even though they had school the next day. 

The grief in the Autism community could be felt all over. Collectively we all wanted to take your pain away. But we knew we couldn't. Even though I haven't met any of these parents in person I knew we were all looking at each other with the same thing on our minds. 

Over and over and over we said: "THIS IS US." 

We saw our sons and daughters in Mikaela. We see ourselves in you. With our voices raised we just wanted to say that even though we have never met:

We love you. 

We support you. 

Your daughter's legacy will be life. Your daughter has woke me up from my grief stricken daze to see what I have here with me. I need to do more than just advocate for my own family..but for others in the same situation. The more awareness the more lives we save. 

Is there somethin' I can do/ What can I say, what can I do. ~Five Star Iris  Music and Lyrics by Alan Schaefer and Dexter Green

There is always something you can do. Care. Become educated about what to do to prevent wandering emergencies and what to do if the crisis happens. 

(She dressed herself)

From AWAARE.ORG's Website:

"A variety of resources are available from tracking devices to door chimes to service dogs. Close adult supervision, along with a combination of security and safety measures and tools can work to prevent a wandering emergency. Below, please find a variety of resources that may be suitable for your loved one’s safety needs." 

• AWAARE autism-wandering prevention brochure
• First Responder Alert Form
• Family Wandering Emergency Plan (FWEP) Template
• Individualized Education Plan (IEP) Sample Letter
• Social Stories
• 
  
• AUTISM SPEAKS AUTISM SAFETY PROJECT
• http://www.autismsafetyproject.org 
• 
  
• CHILD SAFETY PRODUCTS
• http://www.mypreciouskid.com 
• http://www.tattooswithapurpose.com 
• http://www.medicalert.org 
• http://www.americanmedicalid.com 
• http://assurancelockingsystems.com/products/guardian-kid-lock/
• http://www.SelectAutismMerchandise.com 
• 
  
• SERVICE DOGS
• http://www.autismservicedogsofamerica.com 
• http://www.4pawsforability.org 
• http://www.blessingsunleashed.org 
• 
  
• TRACKING SYSTEMS & MEDICAL DEVICES
• Project Lifesaver: http://www.projectlifesaver.org 
• LoJack SafetyNet: http://www.lojacksafetynet.com 
• Alzheimer’s Comfort Zone: http://www.alz.org/comfortzone 
• 
  
• FOR FIRST RESPONDERS & CAREGIVERS
• National Center for Missing and Exploited Children: http://www.missingkids.com  1-800-THE-LOST
• Autism Risk Management: http://www.autismriskmanagement.com 
• A CHILD IS MISSING: http://www.achildismissing.org 
• The Autism & Law Enforcement Education Coalition: http://www.sncarc.org/alec.htm 
• The Law Enforcement Awareness Network: http://www.leanonus.org 
• Autism Alliance for Local Emergency Responder Training: http://www.AutismAlert.org 
• PA Premise Alert: http://www.papremisealert.com 

All my bandits. 

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Missing Child: Mikaela Lynch

Ever since I saw Mikaela Lynch's big blue eyes cross my Facebook feed I've been shaken. Like someone walked over my grave shaken. 

This was my status 17 hours ago:

This hits way to close to home. Recently, Natalie wandered off while my back was turned outside. I found her in a field a half mile from our house. Luckily the bridge down the road was out so we haven't had traffic. Just like this little girl she is attracted to water but doesn't know how to swim. Natalie is also non verbal and removes clothing when hot. I just spent time begging God to help find this little girl.

Non-verbal..being Autistic doesn't equal dumb. Children with are often highly intelligent problem solvers. Natalie looks for when I'm distracted (even a split second) to take advantage to do what she wants to do. 

She has zero concept of personal safety. 

I horrified to tell you the number of times I have found Madeline or Natalie in the road. Once with a huge construction truck stopping just before her. 

Madeline panics. She runs when there is a big sound. It may be towards traffic. Towards water.  She'll shed any and all clothing to include her pull ups. Vigilance is kind of an understatement. 

I've lost Natalie before. 3 hours later and police involved..she came out from underneath the house naked. 

Authorities said Mikaela has the mental capacity of a 1-year-old.

She "is attracted to water" but does not know how to swim, Celli said. Her family's home backs up against water, and search-and-rescue teams were scouring nearby waterways by air and on the ground.

"She can doggy-paddle, but apparently her thought process does not allow her to close her mouth," Celli said.

"We are still hoping for the best," he said. "We want to use every resource we have available to us to hopefully bring this to a positive outcome."

He added, however, that "as time ticks by, the likelihood of that narrows for us."

Mikaela had taken off her clothes - something she frequently did when she was hot - and the diaper she typically wore was found near her home.

Mikaela is 4 feet tall, weighs 70 pounds, and has blue eyes and brown hair. She is unable to speak, according to police.

Readmore:http://www.sfgate.com/news/article/Autistic-SF-girl-9-missing-in-Clearlake-4512413.php#ixzz2TJ4WEAt3

Please God..please help them find this little girl. 

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The Answer To The Question

Every once and a while a blog post stops me in my tracks and makes me think. My friend Liz from Four Sea Stars answered the question she gets asked a lot: 

"Why do you write? Why do you put yourself out there?"

This question was especially poignant because she had just gone through a very negative experience after writing an article on Mamapedia. The post was hysterical but the majority response wasn't. There was a lot of judgement. A lot of unsolicited advice. Then there were those of us who stuck up for her. We knew Liz. We know her self depreciating humor. Of course reason is met with ignorance. A question was then asked.....

"Well, if she doesn't want judgement why does she put it on the internet?" 

Indeed. 

Considering these are anonymous interweb trolls it hardly seems worth it to answer. Liz met that ignorance with passion. Her answer left no doubt as to why she writes....why she puts it all on the internet for people to see and judge. 

I believe the answer is different for every blogger. I don't think there is a right or wrong answer. It just is. 

Last year my step son James passed away as most of you know. It was a long battle with a terminal illness. It didn't make it any easier or harder than any other death of a child. He was gone. He was and then he wasn't. Very few people knew of the drama behind the scenes. James' mother was horrendous to deal with. No one should have to go through what we did. I didn't talk about it much except for a couple of blog posts immediately after his death. 

I wrote it because I was angry. The feelings inside me were like poison. Rage is supposed to be a short term feeling. It wasn't for me. It was long and arduous eternity. In fact, I still feel rage. 

Not long after I wrote that blog post I received a call from my mother. It was under the guise of talking about the girls. Once that was over we got into why she really called. Apparently my mother reads my blog. I've never invited her. I never invited anyone. It's just here...for everyone to see. My mother then proceeded to tell me that I shouldn't write about that stuff because it could get back to the James' mother. I told her that I didn't care. It's my blog. It's my space. It's something I pay for. What's more it's the truth and it's how I feel. 

This isn't the first time my mother has attempted to critique what I write. She was horrified to find out that I write about my experiences growing up, the incest that did happen even though they deny it, the rape, the fact that I have D.I.D. and P.T.S.D. with anxiety or the fact that I cut to make the pain go away, the fact that some days I can't get up out of bed due to depression. This is the same woman who thinks ill of people who take medication or go to counseling. It's not just my mom but my dad as well. I embarrass them. I've always been told to shut up or that I'm lying or making things up. If there ever was a family tradition...it was maintain my family's outward appearance. 

After James' death I had told my mom and dad that even with all the history between us I wanted a fresh start. Family is important. My husband even emphasized this with them. I really thought that things were going to be different. The phone call proved me wrong. My mother's behavior during the funeral proved me wrong. My father not showing up to the funeral proved me wrong. Only two phone calls after James' death proved me wrong. That's when I wrote about what really happened at the funeral. My truth had to be told. It didn't matter who read it. I just needed to say it. I didn't mention that my mom attempted to censor me but this was a direct result from the conversation. I haven't heard from my parents since. Or my brothers. I must have embarrassed them again. Mom must have read what I wrote. I'm not sorry for what I said. It was honest. It is still how I feel. And in a way I received the best closure than I could have ever received in person. I am an orphan.

This is my truth. I will not be shut up. 

I let people see all of me...not just the parts that are socially acceptable. 

I talk about Autism and how although it seems that being who I am..with all these flaws, with all these trials that have plopped in my lap may seem like they are not compatible with each other....they in fact are. My girls have a mentally ill parent. I am that mentally ill parent. I am not embarrassed or ashamed of this fact. 

My little family loves me. Through there love I have found out I have something to say. It's like I was born the day I met my husband and I didn't exist at all until I met him. I don't always say the right thing. I'm weird. I'm awkward. But I finally have a voice. My blog has helped me. It says..I exist. I'm alive. I'm here. When someone happens upon my blog it's a validation. My mind isn't making it up. I really am here. I really do have something worthwhile to say. When my parents look at my blog it says I'm here even if they wish it weren't so. It's not something they can smooth over with their lies. It's now something they have to deal with. No matter how grammatically or politically incorrect I am. No matter how much of what I say makes people uncomfortable.

I'm here and I'm not going away. 

This is why I write. 

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All Of A Sudden...

I don't have enough time.

To qualify for the Home and Community Based Waiver (to help us get a fence & respite) I need to get Natalie and Madeline's Kirch Center evaluation and diagnosis, their early intervention evaluation, their I.E.P's, and the school psychologist evaluation to just see if we qualify.  The problem is I have to have Natalie's speech evaluation redone because early intervention didn't complete correctly.

May 10th Natalie has an appointment with Canisteo-Greenwood Elementary to be evaluated for Kindergarten.

May 30th Natalie has an appointment with a Food Therapist. That same day a Nutritionist. All up in Rochester, NY. It's an hour away. Subsequently, she'll have food therapy sessions every week. Again, an hour away.

June is the month both Madeline and Natalie's I.E.P. are redone. In the meantime I have to set up a time to meet with the Parent to Parent Network to get an advocate to attend the meetings with us.

The social worker still has to set up a time with a psychiatrist to get Natalie evaluated for A.D.H.D. and possible medicine to help her out.

This doesn't include any O.T., P.T., Speech, A.B.A. therapy for the girls that will be done in home.

This doesn't include any appointments that my husband and I might have for our own therapy.

This doesn't include the dentist (hahahaha..right) or any other medical appointments the girls have.

Somewhere I need to find time to get my driver's license.

Somewhere in here we need to pick up Josh from college and get him set up for he summer.

Sorry mother-in-law we won't be seeing you this summer. The girls have summer school to stop them from regressing on long school breaks.

Somewhere in all this we need to figure out money for gas....co-pays...

Somewhere in all this my husband has to work. Hello Federal Family Leave. Hello less pay. Hello more bills.

Somewhere in all this Madeline and Natalie are still little girls.

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Isn't It Ironic? Don'tcha Think?

I must be the most consistently inconsistent blogger known to man. I blog for a few months at a time and then I stop all of a sudden. To the outside it may seem that way. But really I know myself enough now. I know that I need to take a break. It's not that blogging takes a lot out of me. It's more that I can't put enough into it. It's just not there. My emotions ebb and flow. Every time I come back things change a little. I may be a bit more money focused at some point or food focused at another. Sometimes it's my garden or photography. Sometimes it's a passion and other times it's a passing interest. Sometimes my thoughts are dark and sometimes they are funny. This is my selfish place. A place for it to be about me me me me me. 

But if you know me......

My life is my family. That's all that exists in my real life. That has always been my consistent interest/passion. 

This is what I love. This is what I've always dreamed about doing ever since I was a little girl. I've always been a mom and wife. 

I never thought being a mom & wife would be so hard. It's a down right challenge that tests me everyday. 

This month marks the end of an era for me. It marks the end of doing it all myself and the beginning of accepting help. For about 3 years I have battled doctors and even my own husband to have Madeline and Natalie recognized as being on the Autistic. Both Madeline and Natalie just went through the final step. They were both diagnosed by the Kirch Center as A.S.D. Autism Spectrum Disorder. 

Autism is characterized by delays or abnormal functioning before the age of three years in one or more of the following domains: (1) social interaction; (2) communication; and (3) restricted, repetitive, and stereotyped patterns of behavior, interests, and activities.^[9]

They were also diagnosed with Pica. 

Pica is characterized by an appetite for substances largely non-nutritive, such as clay, chalk, dirt, or sand.^[1] For these actions to be considered pica, they must persist for more than one month at an age where eating such objects is considered developmentally inappropriate. 

In addition, Natalie was diagnosed withe hyperkinesis.   

Typical symptom patterns for diagnosing the disorder include: extreme excess of motor activity (the children flits from activity to activity); restlessness; fidgetiness; often wildly or oscillating mood swings (he's fine one day, a terror the next); clumsiness; aggressive-like behavior; impulsivity; in school he cannot sit still, cannot comply with rules, has low frustration levels; frequently there may be sleeping problems and acquisition of speech may be delayed.

Natalie appears to have strong O.C.D. tendencies. Actually, I wouldn't even call it a tendency...I would call it: "Yeah, she has O.C.D."  Natalie also has a problem with eating. She only eats certain foods. You have a picky eater you say? Natalie will only eat Chobani Greek Yogurt for days on end. She might eat a banana or some applesauce. She only really likes peanut butter out of a jar. Spaghetti with sauce but none of the tomato or onion chunks..only the pureed sauce. She'll eat pizza but only the cheese. If you hand her an oreo she'll only he the middle. She'll eat chicken nuggets but only the outside parts. If you don't see it here on this list..she doesn't eat it. While she is eating she must have her Dora the Explorer sunglasses, her baby blanket,  her sippy cup,  a cloth hand towel. If we have more than one carton of yogurt in the fridge she'll have to have it out in front of her even if she can't eat it. She just likes to make sure she has options. We must all be seated because if we aren't she'll get up to see what we are doing. This is just part of our day. 

All of these things are common with Autism. As far as whether or not the girls are high function or low functioning, Madeline is in the middle and Natalie is low functioning. I just chuck that idea out the window as soon as it's presented in front of me. The girls function on their own terms. Didn't Robert Louis Stevenson write a beautiful poem about "The Road Less Traveled"? My goal for the girls is just one: Become the best person you can become with the resources available to you. My goal for myself: Provide them all the resources I can. My end game: happiness. No test score or doctor's evaluation can measure that. 

Opening up my girls' worlds means that I have to open up as parent to let others help us achieve our goals. I just scheduled and appointment at the end of may for a food therapist for Natalie up in Rochester. These meetings will be once a week. That same day we are seeing the nutritionist. Kirch was really good about trying to make appointments together since it's quite a bit of travel. 

Soon I will be talking with the social worker to help us get medicaid for the girls. Since they are both considered developmentally disabled they will automatically qualify. Medicaid will pay for what our insurance doesn't. Everything from in home therapies to doctor's appointments, to medication. The social worker will also do an in home evaluation for services like door alarms and fences to make sure the girls are safe. I've already sent for a Home & Community Based Waiver packet to help us pay for these things.  I'm told once I fill out everything it will take about 90 days to get to that point. At that point we'll have access to respite (paid baby sitter) and reimbursement for therapy toys for the girls. To what extent I have no idea..I just like the idea of the possibility. Alan and I have only once been on a "date". It would be nice to do another one. 

Another thing to help us out is a Parent to Parent Network based in Corning, NY I believe. They are there to help us advocate for Madeline and Natalie during I.E.P. meetings. They help us to know our rights and the whole process. So far with out the network I have felt like Madeline and Natalie's needs have been met and then some. It wouldn't hurt to have backup along. Both Alan and I are new to this. 

Because of Miss Natalie's Hyperkinesis we will be having a Psychiatrist do an evaluation with a possibility of having medicine prescribed. I'd say that the likely hood is about 99%. Little miss is ADHD personified. I truly believe it will give her a better quality of life. 

Also, the speech evaluation that was done by Building Blocks Comprehensive Services was shot down by Dr. Strosky of the Kirch Center. It has to be totally redone because they didn't use the proper evaluation on both the girls. I believe she wants either Building Blocks to redo it using the Raven method.

The evaluator must select appropriate tests and assess the student's educational skills in all areas of suspected disability. In addition, the evaluator must adapt and interpret the tests considering the student's sensory, motor and communication skills; racial and ethnic background; and language background. A variety of assessment methods should be used to collect functional and developmental information that will help determine the student's educational needs.

Yeah that didn't happen. The evaluator didn't adapt at all. He just did the standard test. So now I'm to choose whether they do it again or I choose someone else. I'm choosing someone else. It seems the right thing to do. 

I found out too that I was told completely wrong on the fact that Madeline and Natalie wouldn't officially qualify for services until they were officially diagnosed with Autism by a place like Kirch. This is not true. My pediatrician and the Building Blocks evaluation would both be considered a diagnosis by NYS to qualify. The only blip would be that the state too would have a problem with the way the Building Blocks had done the evaluation and therefor I would have to have it redone anyway. But for as long as the girls were in the Pathways Program and even Madeline transferring to Kindergarten we could have had services to help us during this time. I'm frustrated but I figure it's okay. We'll just keep chugging away and get it done. 

Lastly, we are going to be seeing a geneticist. Dr. Strosky has some concerns considering our family history. In particular, she is worried about 15 and 23q. Some of it has to do with Madeline's head size. Apparently she has a large head for her BMI. I couldn't tell. I think she has a nice head but apparently it's large. Her father has a large head as well so I didn't thing anything of it. It's on chromosome 15 I believe. Don't quote me. The other part she is concerned about is the correlation between the girls both having Autism and James' diagnosis. The only person that was genetically mapped was his mom. Alan was never mapped to see if he too had a problem on chromosome 23q. Everyone assumed it was just on her side because of her family's medical history. Either way it helps out their research and let's us know exactly what we are dealing with. 

We have a bit of a road ahead of us but it won't be alone. Alan and I may not live in a town to have the proverbial village help raise the child. Nor do either of us have any sort of family to help us out..but we have each other and now the Kirch. It's always just been us but now I feel like we are finally moving forward. 

My girls were diagnosed in April which is Autism Awareness Month. Isn't it ironic? Don'tcha think?

(bonus points for you if you know the singer I'm referencing)

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We are all Adam Lanza & Nancy Lanza.

I want to convey my deepest condolences to every person that has been effected by the tragedy in CT. To the families who lost loved ones, to the suspects family, to the whole of the United States and abroad.

At the same time I've never been so ashamed to be a human being. Have we learned nothing? Have we not seen enough horror in our lives to know that this sort of violence is not easily explained away. It certainly is not on the shoulder of one person, a group of people, a law, a gun, or the government. The answer is much harder to accept. The reason is you and me. Those who are in the mirror looking back at us. It is we humans who are to blame. We are the creators of tyrants, of dictators, of mass murderers.

Have you never said something cruel?

Have you never ignored?

Have you never lost hope?

We humans are fragile things. Egos easily toppled. And yet at times we can be the bravest, most noble beings. We always must have the answer. We must give things labels...things must fit in tidy little boxes or we fall apart.

No one knows was Adam Lanza went through..nor Nancy. They were babies, kindergartners. They lived and they died. They died in the most violent of ways. They hurt.

Have you not hurt?

Have you not suffered?

Have you never been to the brink where all is nothing and a deep black void?

Have you not felt pain where it's so deep you want everyone to hurt as much as you?

Have you never met your limit?

Have you not felt rage.


I have a mental illness. My mental illness was given to me by events in my life. Things that happened to me. Things I had no choice about.

My brother is a baby killer, a rapist, a drug addict, a pedophile, a murderer, a thief...the foulest of foul.

My family isn't. They aren't perfect. They are far from innocent. They are contributors to what my brother became.

I'm a victim, a survivor, a mom, a wife. I'm here to tell you that life will go on even though you think it can't. I'm here to tell you that pointing fingers and finding reasons brings no peace. The only way to find peace is to find it within yourself.

My brother raped me.

He abused me.

My family didn't believe me.

My family physically, emotionally, psychologically abused me.

My brother murdered a little girl on my birthday.

My brother married someone with my name.

My brother hurt the little girl sexually, physically, emotionally.

I grew up damaged in every way. But someone wound up loving me, marrying me, cherishing me. We recently lost a child to terminal illness. After everything I've been through...now this. I have two children with Autism who are my light and joy. They are not damaged. They are not broken. They don't need to be fixed or eradicated. They need to be loved. Just as anyone does. They are not psycho killers.  

But society has already judged them and found them guilty. I am a their mother who has a background of mental illness and abuse. I have a murderer in my family. The foulest of the foul. But because they have Autism..they are doomed to be a repugnant source of evil to the whole of humanity.

But society forgets.

It's choice that makes us murderers.

It's choice that points the finger.

It's choice that does good.

Not fate.

Not birth.

Not Autism.

Us.

Me.

You.

Everyone.

Being kind is a choice all too few make. Have empathy when you feel apathy. Understanding when you can't understand. Forgiveness when you can't forgive. Kindness when you feel rage.

I may not have had a choice about what has happened to me. But I have a choice in how I react. How I treat others. You do too. 

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