Why I left FB Land Autism Community

I will preface this piece by saying I DO NOT BLoG! I keep a virtual diary! I don’t edit! If you are a grammar nazi..move on please…ain’t nobody got time for that!

I unpublished my page..I’m Bob several days ago. I left a following of over 1800 people. I left something I loved to do. I left a community, a community that I joined and built my only corner from the ground up. Yep, I built it. It wasn’t given to me! I wasn’t a lucky “newbie” as I’ve been accused of being. I left it for me. I left it to do something more.

Tired of reading rants..tired of ranting myself..I was ready to do something in the real world. With that being said ..I know that I made real connections…I know I helped people and was helped and supported by others…it just comes to a place and time where you need more..for yourself..your family..the community that is Autism…

So..I made the leap..the opportunity came…I was asked to mentor other newly diagnosed families. I will do one on one , face to face , talking to families. Families that are new to this journey. They need support, as all of us do when the journey starts and as you travel the road this journey takes you on. I’m up for the challenge and excited about it.

For those of you whom I have connected with through Bob’s page …I am not gone..just dormant right now. I have to focus on the present the tangible. But I will be back! For those of you who need to know what’s going on in Bob’s world…you are welcome to follow my blog. I promise to keep you updated!

Love and hugs dolls,
Lori
Aka Bob’s mommy

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The Underbelly

Your child is diagnosed with Autism. You are reeling. Scared. No one you know has a child on the spectrum. You scour the internet for information. You wind up on Facebook looking, reaching, searching for others like you. You find people. Lucky you, right? Maybe….

What no one tells you about this community is that it is not so much a community but a group of sub groups or zones. The community is not much different than a war torn country. You have the adult autistics, the Autism advocates, the parents of autistics and then you have the bloggers. A variety of community wrapped up nicely in Pandora’s box. You open that bugger up and you don’t know what the hell will come out.

I opened the box up. I jumped right in with a PollyAnna attitude. In my mind, my limited experience, I was over the moon happy… I had found my people. What I thought were my people…for the most part they were… For the other part…not so much…

I consulted trusted others before writing this post…they told me..you’ll be shunned…you better have a thick skin…you better be ready for what will come…I listened..I heard them..and I thought. I thought, what the hell..I’m opening the box. That Pandora’s box of taboo…don’t tell..don’t share..only with the group…but who is my group anyways…

I thought I knew. I didn’t. Facebook is a great connection for an Autism parent. You have time during therapy. It’s easy. There is no face to face or distance to close in..just a keyboard and your fingers and sometimes your heart. Yeah, you get attached to people you never met. I wrote a blog post about it. About these sisters I made through a page we made…a page that went big..really big..it felt good..no..it felt great almost 1500 people in two days…over a concept I devised..with a group of “bloggers” I admired.

It turned out differently than I expected. People were bickering behind the scenes. Some people wrote nasty blogs about others..very passive aggressive..I had one written about me…for just saying I felt bad for that person. Two of the sisters in the community got pissed and messed with the page behind the scenes…turning off all admin settings except for three on the page and leaving a present for all the followers to see…a lovely cake..that simply said..Fuck you….yeah..I called these women friends..asking about their children..even sending gifts to one of them because she didn’t know how her kid would have presents for his birthday….Pollyanna….I will be this forever I guess…. I thought….

I wanted there to be a point to this post…at first I thought it would be a warning…to not trust people you don’t know…but I can’t do that…there are good people..there are kind people..from all different zones..autistics ..parents of autistics and even bloggers..but there are some who are not…they lurk…they become your friends or not…it really doesn’t matter..I believe in people..their faults..their challenges..their journeys..

My point..to bring an end to this rant is…trust your gut…but if you don’t and you get the proverbial “fucked”… Forgive…release..forget…that’s what I’m trying to do….
Xoxox
Lori

Wait for me…

Wait for me..he says…my son..my 4 year old… He wants to be part of everything, yet he fights leaving the house..he likes to stay home..but if I say I’m going, he says…wait for me….

And that’s what I do..because he asks me..because I must.. I wait…

I’ve waited for a long time. I waited for his birth. I waited for his first words. I waited for so many things. In four short years, I have waited for what feels. like my whole life, for things to happen.

Good lawd they have…but not the normal path…at his own pace…

And it’s all good..I would wait for him forever if need be…I will wait through his first day of school… His first longing for friends..his first everything…I will wait …I will be here…for him..for always..I will wait…

I love you Bob…Mommy is here….always..waiting…

Love and hugs ,
Lori.
Bob’s mommy

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I don’t know if he will be ready..

My parents came today and we had such a good time. Bob got presents..spider man doodads..things that shoot webs and make noises and spider pjs..he was in hog heaven. My momma caught me off guard, when she asked me if I thought he would be ready for kindergarten…..

The truth is…I don’t know…it’s a year and half away..but closes in daily as I watch him go through the hoops of therapy. He progresses every day. His language has grown..his thoughts are forming more clearly as well as his speech….but I just don’t know…

With all the progress Bob has made he still has deficits..he still falls slightly behind his peers. I suppose I should be thankful. My boy speaks and makes connections…I just don’t know…

And that scares me…worries me…encompasses my thoughts when I’m alone or I watch other NT children…

It worries me that I have connected with so many of you and you share your stories that give me hope or give me cause for worry…

I just don’t know…..

I tell others that confide in me that everything happens for a purpose and that NT is overrated….and I believe these things…

I just don’t know…

My hope is that even if he is not ready for kinder….that I will be ready to equip and fight for him to make his life as happy and complete as it can be…

Just sometimes….a lot of times…I just don’t know….I’m sorry…i wish I knew….

Lori

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I pray….

I am not overly religious. We haven’t attended church on regular basis in so long and I’m ashamed of that. However, I still pray. And when I pray, those moments of quiet that come up every so often, like the wee hours of the morning or sometimes during the day, I ask for things. Things for myself and for others…

When my son had his first febrile seizure and was christened in the ER because we were not sure he would make it…I fell on my knees and prayed for his life…I prayed for the strength of his body to surpass this episode..I prayed and I prayed hard.

Prayer answered…

I pray for all of you that I follow or are friends…I pray for your kids, your sanity, peace..mainly peace for all your lives…

For the ones in the headlines, like our Avonte…I say our, because he is part of our community..I have heard too many people say, that could have been my child…in reality, he is our child…it takes a village we are the village….I prayed for his return…now I pray for his family and that they find peace and I pray that this doesn’t happen again….

I still believe and I will continue to pray…

Prayer gives me hope. It offers solice. It takes me to a place of quiet and reflection and….peace….don’t we all need peace?

My prayer for all of us….peace..just that….peace….

Lori

I “get” Jenny McCarthy…

When the thought that something was not quite the norm with Bob I began searching for answers. I googled A LOT! I found myself on YouTube and websites for child development. I looked for videos of children my son’s age. I searched for comparisons. I searched for answers. I was scared, confused, and grasping at anything that would answer my questions about my son. Why did he walk on his tiptoes? Why didn’t he answer to his name? Why didn’t he play with his toys?

I stumbled upon McCarthy’s book and foundation. I read her book and I cried; because her son was like my son in many ways. I didn’t know at the time that when you meet one autistic child/person you have met one person. They are all so different…hence autism being considered a spectrum and a conglomeration of comorbids. I didn’t know that back then..what feels like a thousand years ago, when in reality it has only been a year and a half, that her my son were different and the same in many ways.

When Bob received his formal diagnosis, I had already decided on ABA therapy and GFCF diet and a DAN doctor. All due to McCarthy and some limited research I had done. I talked about a cure for Bob. I was so happy we had caught him at an early enough age that a window of opportunity was there for my child to be recovered. I didn’t know. I trusted another mother who had a struggle with her son that seemed so similar to mine. She fought for him the same way I would fight for mine, tooth and nail.

What I didn’t know then, I do now. I know that not all protocols are for all autistics. I know that my child has no need to be recovered. He was never lost. I know that not all people or organizations are to be relied upon as the be all end all for your child. I know that the more I network and the more that I read the better I become at mapping out the appropriate path for my son.
I know that the best support and ideas and explanation for my son have not come from the internet, doctors, therapists, or a tv star, but from the people I have met and networked with via facebook. Other parents in the trenches, so to speak, they have been on this journey longer than my family. They have been my go to. Adult autistics who have followed Bob’s journey and have offered explanations from their perspective about my child’s behavior, these cyber people have been the biggest help.

So, when I say I “get” Jenny McCarthy…I do. I am thankful for her telling her story. It was the springboard for our families journey. (Minus the no vaccination thing). Even though the community in general despises her for falsehoods she has presented and possibly misrepresenting her child’s diagnosis It’s still like all of us…her child’s journey, no matter how misguided the mother. If you are a veteran parent,as a community, as human beings, help the newbie families…share your knowledge…offer support and an ear…
We must help each other…we must listen to each other..we must be the Autism Community that we all claim to be a part of….

Ain’t nobody gonna make it so…but us….

Love and hugs,
Lori
Bob and Sissy’s mommy

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Every parent wants the best for their child….

The Monday before Christmas Bob had a cough, not a deep congested cough but a barky cough. Because of the holiday approaching and all the hub bub that goes with it, I took him to the peds. She happens to be my neighbor, who also has an autistic child. Bob loves her and I do as well. There is extreme comfort when a person caring for your child has the same bag of tricks that you do. She gets my child and she gets me. His lungs were clear. But, the cough needed to be treated with a steroid. Bob refuses any oral medication. His intolerance of such leaves his course of treatment with the only avenue for his well being, a shot.

Fast forward three days…Bob is not better. He is crying. His ear hurts. I know because he tells me. Thank God for language. Back to the peds we go. This time we see another physician, my neighbor is on vacation. Bob is asleep in my arms by the time the doc comes in to the room. Probably a good thing, he hates his ears being checked. He has already told me several times while clinging to my neck, that he wants to feel better. He pleads with me..breaking every heart string I have. He wants to feel better. I want to make it better. I can’t. He has to get another shot for the infection. He gets it..we leave..he cries and I pray. I laid in bed with my child and he held my neck as I pressed my face to his offending ear, to make it feel better. He cries, I pray.

The weekend passes…his eating slows and his drinking is close to nil….back to the doc on Sunday…

Bob is exhausted…dehydrated..I am depleted..he is admitted to the children’s hospital….

The whole process is draining. I try to look for silver linings, like the admin nurse, who thought my husband was Bob’s grandpa..lol

The hospital was a teaching hospital, which basically means that there are a bunch of baby docs who will come in and take a gander at your kiddo. Doc number 6 comes in and looks at Bob’s vitals and asks me questions and gives his diagnosis, viral, yeah ya think. He asked me if I had any questions. No, I say, you are the sixth one to come in here and all of you have said the same thing. I say one thing for your group, you are consistent. He smiled and went on his merry way.

Next stop, X-ray. They needed to check for pneumonia. The tech comes to the room with a gurney to take Bob for his X-ray. I told Bob we were going for an X-ray. His eyes lit up. He loves the alphabet. X-ray stands for X. Bob gets this, for that I am grateful. He gets on the gurney the entire ride he holds my hand. He handles it like a champ. He even got to see his X-ray and he smiled. I am thankful for a hospital geared towards children and a medical team that gets autism. The sweetest thing was my son, while we were waiting on the tech..he cupped his hands to his mouth and said, I’m ready for my X-ray. Smart boy, makes his momma proud and thankful that his X-ray was clear.

He also was fitted for an IV..which he was fine with..due to a team that handled the situation like all children should be treated. After that we were back in the room and received a bolas (fluids) to put him on the mend. He thankful fell asleep. Exhaustion set in, thank you Jesus. Because, every two hours a nurse came in to take vitals. This leads the story of Esther.

9:00 pm Esther walks in to take vitals. Bob promptly tells her to go away. She tells him she won’t hurt him, in a very thick foreign accent. I don’t know if the accent or her beautiful dreads threw him for a loop, but he recoiled from her and said No! I stepped in.

She asks, “He doesn’t like to be touched?” I told Esther he is Autistic…do you know what that means? She said no. I told her, in very plain language, that he has sensory issues and let me help you do your job. And she let me take his temp and blood pressure reading and said she would check on us in a couple of hours. Bob fell asleep.

Esther comes back at 11:00pm. Thankfully, Bob is still asleep and as she takes his vitals I ask her some questions. I told y’all I love people and to hear their stories. Not to mention, I needed a distraction. I asked this sweet girl where was she from. She replied, Nigeria. I asked her what brought her to SC. Esther proceeded to tell me that in her country, if you are a girl and your father is not rich an education is out of the question. Even if you are smart enough the professors are crooked and need a pay off for girls. They either except money or “favors”. Thank god for her father…he scraped up enough money to send her to America. So that Esther would not have to offer favors to the professors and could get an education. She will finish her nursing degree in May. For now, she is a nurse tech and damn good at it. She also told me when she goes home, she will be considered a big deal. She smiled when she told me this and smiled with her. I hope she succeeds in her endeavors.

Bob was released the next day. He was eating an drinking again. The fluids did a great deal of good for him. As we left the hospital, I thought of Esther and my child. All concerned parents worry about their children. We all hope for the best and try our hardest to put our children in the right place, for their well being.

No matter your journey..or where you are in the world ..we all have a path to follow…and as parents..make sure you do everything in your power to make sure your child/children have the best…the best you can do…..

Love and hugs,
Lori
Aka mommy to Bob and sissy

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