Desperate To Be Heard

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My heart breaks tonight. One of our own, a blogger, a warrior autism advocate, a GOOD mother, attempted to take the life of her child with autism and her own. You’ll hear the details. They’ll be out there for the reading. You won’t have to hunt for long. Whenever something like this happens, you hear about it for days, weeks, months. You know what you don’t hear, unless you’re listening for it? The cries for help that were screamed BEFORE this happened.

I see it everyday, all day on my community Facebook page. I see it in my fellow bloggers. I see it in the other autism mother as we lock eyes in the grocery store. We are DYING for you to hear our story. We are begging you to care. We don’t want to burden you….but we are DESPERATE for love and a shoulder to cry on. We don’t care if you’re living our life or not. We need to not feel so alone. We need for people who still HAVE strength left to carry the torch for us, while we regroup and decompress from the battlefield that is our life.

Our lives, our children’s lives, depend on somebody willing to step out of their world for a while and be a friend. A REAL friend. We need for people to really get how hard it is to FIGHT for our children to be properly educated, medicated, and cared for. WE need for people to understand what it’s like to swallow our pride and turn for assistance from the almighty powers in charge who SAID they would be there just for “people like us”, only to have to jump through months and months of hoops to be turned down.

We need you to get it, because there are days when we can’t fight for ourselves anymore, but we still have these children that depend on us. We STILL want what is best for them, even if we are too weak to seek it out. We need someone to feed us when we just need rest. We need someone to take our kids for an hour or two, so that we CAN get on the phone and discuss why our kids actually need those services…because, apparently, a melting down, non verbal child in their office just doesn’t prove enough. We need teachers that will stop getting their feelings hurt, if we have a little bit of a chip on our shoulder and understand that it’s come from years of being pushed aside.

A daughter and mother…lie in their hospitals beds tonight after being told, “We can’t help you.” by a teacher that got her tail feathers ruffled over a mother doing what she’s always had to do….FIGHT for her child to be taken care of.

We aren’t asking you to lay down the red carpet and treat us like royalty because we were born into a club of people who deserve to be treated better. We’re asking you to hear that we are FALLING APART some days and we NEED you. We just….need you.

Our lives are made up of our children screaming at us and throwing punches at us one moment to wiping our tear stained cheeks the next. There is never the same day twice. There is never any predicting. There is only preparing for anything and everything and battling the world, while we’re at it.

How hard is it REALLY to listen? To care? When will OUR cause be worthy enough of a Tshirt on your back or special speaker at your church? When will some of that research money to figure out why we are the way we are go to helping the children and families that are living with it RIGHT NOW?

How many more mothers have to feel a mercy killing is their only option for peace for themselves and their children before somebody says, “I’ll listen. I’ll be there. I’ll help.”?

My heart and love go out to Issy and Kelli. We are so sorry we let you down. We are so sorry you felt that alone. So very, very sorry.

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16 responses »

  1. So you are condoning an attempted murder because the lady was frustrated. Nice position. I have a vegetative son… Should I kill us becuase its hard? Your nuts lady and the attempted killer should be locked up. Clearly she has problems beyond having a kid with autism.

    • Of course she does! But imagine … just imagine … your vegetative son gets up, and beats the crap out of you. Every day. You don’t get PCA hours to help. Saying “get help” sounds nice, but it’s not so easy.

  2. This is so sad to hear 😦 Yet at the same time I can relate! I can imagine we all can really!
    The only time I was thinking suicidal thoughts came down to my GP and therapist not understanding me. I feel we aren’t really bothered with at all. It’s not fair!

    😦

  3. How can you sympathize and support someone who murders and innocent life? Since when is Autism grounds for murder?? If she was so desperate and self-pitying that she wanted to end her own life FINE! But to take Issy’s life too was just heinous. There are 100 alternatives to murder. Shame on you for encouraging this sort of act. If you think being a parent is hard try being AUTISTIC in a world that sympathizes with the people who try to end your life.

    • I AM autistic….raising four special needs kids. In our blogging world, this mother and daughter were well known. I am not condoning murder. You’re putting that into this yourself. You need to follow their story a little closer to understand what I’m REALLY saying.

    • Uncalled for. She’s not in any way condoning murder. She is stressing how the struggle affects our lives. How we need more people to actually care. How this mom desperately sought out help over and over again and was turned away with the infamous words of ‘there’s nothing we can do, I’m sorry.’ She’s saying how we battle everyday life and the world of Austism combined. How we have our children beating on us one second, and then wiping the tears from our cheeks the next. How life with autism is unpredictable and there’s no ‘planning’ because we never know what to expect. She’s saying there needs to be more resources readily available, and people who care. So please, before you go casting your judgement stones, try living one day, one moment, one battle in another’s shoes, on the autism frontline. No one should be here casting judgement, we should be nothing but supportive towards one another. Letting each other know that we are not alone.

    • My heart breaks for this mom & her child. As a grandmother raising an ASD child with NVLD, who had suffered abuse, from age 17-mos., I will never, ever forget the dark yrs., when she hurt herself, when she bit herself & me, when she pulled my hair, when she beat herself in the face, when she screamed all night long, when she screamed at me one minute & ran into my arms the next. I won’t forget how near wild I felt, so great became my need for just one moment’s relief, a shower, clean hair, a meal. People do not hear us & they do not understand, & they somehow find our misery unseemly, & our little ones terrifying or embarrassing. I remember wanting to scream at the sound of the words, “protocol, standards, criteria, funds, limitations,” etc. Sometimes I had to struggle not to physically attack people for their utter stupidity, or callousness, or both. Her father & I were alone with our beautiful, suffering little one & it was as if the whole world had gone deaf & blind. After several years on our own, we were finally able to get to the proper professional help. It took a 4-yr. fight with her school to get an IEP in place! And, those aren’t even the extremes of what we experienced. So great was this child’s suffering, & so profound was my heartbreak & exhaustion that I would find myself at the end of the day, on the kitchen floor on my knees, rocking & keening like a dying animal. She is 10, now, beautiful, happy, funny, smart, & continuing to work every day on her coping skills, & with the help of a team of saints (professionals), meds, & heaven-sent blogs & pages, she is currently stable, & I am up out of the floor. My purpose in saying all of this is to say to anyone who may be in that dark place right now, that we are here, & we’ve been where you are, & that you can reach out to us & we will share whatever we know, have learned, and/or experienced, in order to help you. You can’t shock or embarrass us because most of us have been there. We can help direct you to services, professionals, assistance navigating the school system, etc. Just, please, for the love of God, remember that no matter how dark the night, the sun will surely rise again in the morning, & with our help you can rise to meet it. Sleep with your child if that’s what it takes to be able to rest a bit. Eat, no matter when, where, or how. Stay hydrated. Avoid alcohol & drugs. Learn to ask for help from family and/or friends – they may be willing to help but just don’t know how. We didn’t have that option, but if you do, don’t be afraid to tap it. Even if someone comes & stays just long enough for you to bathe & shampoo your hair – that’s golden. I wish I’d had that bit of relief & I want you to have it if you can. I’ll stop now, just remember, we will help you if you will let us, but you have to make yourself known. Please!

  4. People struggle EVERY DAY with equal challenges and don’t kill their kids over it. Your struggles are not as unique as you assert nor incredibly more difficult than the struggles of many others.

    The way you wrote this places blame at the feet of institutions and teachers.

    Anyone that tries to kill their kid is NOT a good mother. Kill the child of hand the child to the state…

    • I am absolutely placing blame on an institution and other agencies for turning their back on this family. Not for the choice the mother made. You are wrong. Good mothers do completely fall apart when they are under the cloud of severe depression and desperation. I have gotten TONS of messages from excellent mothers, some I’ve known for ages, saying, “I’ve been in this place before. Thank you for talking about it.” Depression and feeling like you have nobody to help you with a child that harms themselves and you make a very bad combo. This mother was literally scared to death. She did EVERYTHING she could have done to get the right help for her daughter. Yes. She was a good mother. People that refuse to hear what so many parents are facing and the mental breakdown that comes with it, are only adding to the problem. MY POINT, which is very valid, is that agencies and the government should do their JOB. If you haven’t battled that problem, you have no idea what she went through.

      • Maybe leaving a link to all this ‘other’ stuff she and others did would help us who ‘don’t understand’ . You did mention its easy to find, but why not post it. Please. I know this is a touchy subject but if we don’t understand or we have our own views … don’t … idk get so defensive. Ive worked with Autism advocacy groups in 3 different states… It takes WORK and a small army to get change done. I am so SICK of hearing people complain about stuff but not taking any action. What did she do? So many members/parents on your blog you say, did you ALL write a letter or call her local representatives? Ive had depression. Ive had a knife to my wrist. I know that pain, please dont assume I dont…. and I WAS A NURSE FOR OVER 7 YEARS, if you are feeling depressed. You walk to a HOSPITAL and you ask for help. You walk into a HOSPITAL and say, My child has Autism. I am depressed. I want to hurt us both. I need help. Tell me she did THAT and got turned away, then she’d sue the hospital.

        Write the government, do MORE. It didn’t work with a few letters or calls, then DO MORE. The poisons they’ve been putting in the food for the past decade is a cuase to a rise in Autism. The FOOD YOU EAT AND GIVE YOUR SPECIAL NEEDS child is just as important as therapy and hugs. WHAT HAS REALLY BEEN DONE…
        Having a child with Autism doesn’t give a parent a ‘right’ to judge others who don’t and who dont “understand what I have to go through”.
        Say No to pity parties and Yes, to Change it parties!

        “If you haven’t battled the problem you have no idea what she went through” <— right.
        Which is why THIS article/blog should have done that more.

      • Where to begin with you, Jayme….first off, this wasn’t even KIND OF a pity party. These are facts. This is exactly how it happens for us. I don’t know any of my autism advocate friends to be cry babies. I know us all to be honest about our lives and what we face. We do that because awareness IS that important.

        Why didn’t I link more about their lives? Because I didn’t feel it was my right in that moment. I knew people could easily find all the information they wanted to IF they wanted to, so don’t blame me for what YOU don’t know. I do my part. I advocate. I make the calls. I join the petitions. I do what I need to do, while still managing to function as an autistic in a neurotypical world and raise special needs kids. I JUST went through months of jumping through hoops for the government, trying to get services for my sons, meeting ALL of their requirements to be turned down LAST week for help. Pardon me if I’m a little defensive. This hits home way too much for me. Ask any autism blogger with a Facebook page if their personal page posts about autism and spreading awareness receive ANY attention and they’ll tell you it doesn’t. So yeah….we NEED people to get a clue. Not just for huge things like this incident, but so we can just go to the grocery store without people belittling us and our children.

        Furthermore, if you DON’T have a child with autism, don’t begin to tell me the causes of it and spout off about food. We’re an organic family…and low and behold…STILL AUTISTIC. You couldn’t have possibly done anymore research than I’ve done on it on all those sleepless nights.

        I wasn’t condoning murder, blaming anybody, or pointing fingers. I was begging for people to listen….but like so many, you’d rather talk about what YOU know while not living this life.

    • Hmmm. I think more work with the city and local governments is more important than what I, a stranger, can do. I can smile and hug a parent. I can say words, that are more empty than I realize bc I DONT have a child with a disorder. I can offer to babysit, only to not be prepared. I can buy a book or send a online article only to have a parent say, I dont understand this battle (this happened once). I don’t know. This article made me feel like Im to blame a little bit bc these mothers / parents NEED me to understand and give a shoulder.

      I have a group I go to 3x a week to deal with My life struggles. I write to my councilmen/woman and city officials when I want changes. I petition and network with my neighbors. I take time. Its hard work to make change. I cant sit and expect it.

      Where my heart aches for the mother& child, this article/blog ^ wasn’t very well written for a newcomer to this blog/site. The mothers in jail who attempted to kill their child bc of postpartum … or bc their ‘legally insane’ ? I don’t agree. What would have happened if the local city was involved more ?

      I wish nothing but light & happiness to you all!

      • “I have a group I go to 3x a week to deal with My life struggles”

        I haven’t been able to shower in a week, my son wakes up at 4 am every single morning, and today when we went to the store to buy groceries he banged his head on the cart until he was covered in bruises. I would ask you to watch my kid so I could have the luxury of going to group 3x’s a week, but it’s clear you couldn’t handle it.

        “I take time”
        There is no doubt in my mind I have spent more “time” dealing with getting help for my autistic child than you have on anything in your life.

        Understanding of the general public is absolutely necessary. We need ally’s. We need support. But most of all we need understanding – So that when we do hit our breaking point we will know we aren’t alone, and not feel so desperate to relieve the pain of our children that we do something so horrendous as attempt a murder suicide. Because to this mother, she had exhausted every option and had no where else to turn.

        Belittling her struggles helps no one. The fact that you cannot see that means you are part of the problem not the solution.

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