Dear Anonymous

Dear Anonymous---

I have thought on what I wanted to say in response to you, for over a week now. Your words came at a time that I wasn't in a good place. I was very down on myself and feeling like I had failed my son, very sad and really still trying to adjust to my role in my new normal with my son's journey. Any confrontation was causing me to break out in a sweat, my body to shake and my heart to race.
But I think God maybe sent me your heated words at a time I was hitting bottom.
I didn't want to read your words, I didn't want to experience any emotion they might make me feel too deeply and I was completely uncertain of how I would react. But I realized your words were speaking as if you know a lot about my son and I, and I don't know you at all. I don't know where you've been in life or what you've experienced. Or even what truths you do know about me.

Turns out your words brought back ome of my passion--but not anger. None of this is said in anger to you.
While I am at a place in my life I am very tired of having to explain myself to anyone,
I get the sense from your words you're either working for a state agency like DHS or have a loved one that is. And that is something I understand and identify with.
Someone you feel deserves a more fair shake than you felt my words were indicating.

I think maybe it's true what you're seeing is me expressing a more negative, frustrated look at what is happening around my son and I at the present. However, I'd like to point out that while expressing my frustrations, I haven't been calling anyone ugly names or decided to call their office every day and scream and yell at people in my frustrations. We all know there are people who do that. Usually when you leave the hospital they ask for a survey of how your experience was with the conditions and stay. I think my blog post--like anyone's blog--was an exercise of my freedom to express my frustrations at a situation I found myself in. I don't personally believe that if I'd called in to vent my frustrations to an office worker or random person, it would have changed an already carried out situation.  I think a huge portion of my frustration would have been eliminated if I had been told the hospital deadline was going to be completely firm, unlike the previous deadlines. And if I'd been told ahead of time what the plan was for after leaving the hospital. The extent to which DHS has gone to make my son's stay at the shelter comfortable,has eventually made the transition as easy as it could be for he and I both. We're all human and we all choose poorly at times.

For me, my blog has been about expressing or sharing experiences that the average parent is not going through, in a way I would not feel comfortably doing so even with friends, one-on-one. And friends & family DO ask me regularly how I feel about all of this.
Surprisingly as it may be to you, I'm quite private about most of my feelings & emotions.
 I do get many questions on what it's like to live life with two totally different children on the autistic spectrum. And to be completely transparent with you, most of what I experience my own mother would have a hard time believing. I'm a firm believer that information is power, and I personally know of other mother's going through what I am, with my middle child, and if I can help or lessen their burden by imparting information--I won't stop. I'm a firm believer that as human--but women especially--we need validation to feel healed sometimes. We need someone to say they have felt those same feelings or that they know that feeling. It makes us heal faster in my opinion. I believe some mom out there needs to not always hear the happy. She needs to hear unfiltered truth of how ugly living with autism is sometimes. It's not always fair and it's not always an Oprah happy ending. One thing anyone who truly knows me will tell you is, I'm pretty genuine. What you see, is what you get.

But if a child you knew or that was your own, was going through a rare, barely heard of heart condition-- besides reading WebMD, I would hope somewhere you'd find someone to give you the outline of what you might experience down the road. That somehow,  knowing someone is feeling what you feel, might give you comfort in a situation where no parental handbook has been written.

In case you don't know my background,  I went to college and received a Bachelor of Science in Child Development. I started out as a social work major having worked with abused children before and having been adopted myself, this was the area where my interest was--helping children. Having worked in residential treatment facilities, having worked with autistic kids and  having wanted a career in this profession--I am a bit familiar with certain aspects of it. My greatest education is having raised two children at different ends of the spectrum. I'm definitely no expert, but from MY side of this coin, I probably have feelings, emotions and experiences I hope you never have to go through.
Not many people have had their own child beat them up until they couldn't move on the floor. Or try to kick in a door to get to you while you huddle in the dark on the bathroom floor praying.
I hope you never see a child put their own head through a wall or window hurting themselves repeatedly while staring at you for your reaction. I will bet money, that no amount of education, training or experience prepares anyone, especially as a parent for that.

But I have not been as forthcoming on my blog about the positive things I've seen lately.  That may be seen by you as an irresponsibility on my part. I see it as truly a human error or moment of being tired from 6 months in the hospital while juggling my other children's lives and wanting to post an update for my numerous friends and family all at once.
You were reading my frustration at going from being at the hospital for the last 160 days and in on every decision from what color of jello he ate, all the way to what snack motivation we should try for him to take his meds. To go from being in the loop, to being the last to know things about your own child has not left me in a happy place trying to work through the adjustment period.
But I feel like while I aired frustrations, I haven't called anyone ugly names and I've kept myself mostly together.
Expressing dissatisfaction with the way things are being handled isn't a horrible offense.
I've been quite patient and tolerant. I'm not sure if you have children---but the pictures I could show you of what bruises and the locations on my child's body, that he came to the hospital with, could only be nefarious.

My son's DHS worker knows that I work tirelessly for him. In fact, before we ever involved DHS for a special needs petition I had called almost every single facility in this state and the surrounding areas. My first time in court I had stayed up until 2 am the night before, typing up a three page list with all the facilities I had called, the date/time/name of anyone I talked to and why they said no. So I definitely do my part and offer up my help or assistance in any way I can to make their load a little easier. And our judge has been a tremendous advocate for our son and is aware of all every agency worker or any one person is doing to help his case.

What was missing I think from my blog posts you were referencing, were the many times I've asked my hundreds of friends and family to pray for my son's DHS case worker. To give her strength as she has been on this journey for a very long year with us, working tirelessly for him (and many other clients) while he was in the hospital. While I was feeding him and wiping his hiney, she was making calls daily on his behalf.
She knows I pray for her and that my son's prayer warriors pray for her and the countless other people involved in his case & their good work also. We pray for each person who comes into his life, that God might have a hand in them being there. I am fully aware of where the hold ups are on my son's case with getting him moved somewhere. And from what I see and hear, it isn't within DHS. He has limitations that hold facilities back from taking him and the state agency holding the purse strings has the main final say. But when you're eating in a restaurant and they bring you the wrong salad dressing, you tell the waiter--you don't barge in on the chef in the kitchen. You don't hold the waiter responsible, but he IS the one you have direct contact with and who you ask to make the changes for you. And you may doubt from my previous posts about my politeness, but although I have begun to speak firmly, I wouldn't say I have been impolite with my waiter.

I think that leads me to your direct point you made about how I must be suffering from guilt about not having my child living with me. I have no problem owning that statement. I do suffer from guilt as almost any parent does to varying degrees. There's no point in denying that guilt because I will have it forever. I had to make peace with that several years back. And I think that peace that passes understanding was a gift from God.

Now, do I wish my child could live with me in a peaceful way that benefits him AND my other children in my home---definitely.
Do I wish that if he lived with us, we could do enough to make him at peace and meet all his needs daily--yes.
Do I wish that it would be enough and the entire rest of the family wouldn't loose themselves in the process--more than anything.
I saw while he was in the hospital that it took, shifts of nurses, sitters, OT, PT, doctors and me being there almost all day every day---and it still wasn't entirely enough.

Not being enough for your child is a hard pill to swallow.
I would equate that feeling to having to put one of your parents in a nursing home.
Do you want to--no. Could they live with you--sure they could. Would it be enough for you and your spouse to take care of them around the clock---loose sleep at sporadic times, keep them from eating every single thing in the fridge, keeping locks & alarms on all the doors including the bathroom, diaper and bathe them and then you still must go to work, cook meals & tend to the other loved ones living with you?
Would you be able to not loose your mind, marriage or sacrifice anyone else in that home's well being or sanity?
Would you question that decision?
Who means more---your parent or your children?
Do you think if you choose, you won't ever feel guilt about that choice?
I'm not in that position yet--my mother is in a wheelchair and I am an only child, but luckily she has an amazingly, giving family that helps with her more than I can and do. They help me with her, so I can help my kids.

The good news is, my son doesn't need me as much as I need him. He doesn't need me daily in the same way my other children do. When his needs are met, he is happy to have me around or to be in his own world talking to his happy finger.
God allows that to soothe my soul and my momma heart so I can sleep at night.


All these words were not warranted in response to your post. I just wanted to hopefully give you a glimpse or look into where my shoes are standing today and maybe what's it's like to wear them. Hopefully you can see where I was writing from was not a place of anger, but parental frustration and sadness and maybe that's something you could understand or relate to. That maybe, we can see things from each others side of the coin.
 I'm not apologizing for my post, but I want to say again I appreciate your passion for your loved one that I get the impression may work in this area. It's a noble job field and it takes a lot out of a person. Adults hold those jobs, adults chose those jobs & adults run our state agencies and control the outcome of where the funding will go for kids like my son. 
MY passion comes from speaking up for not only a loved one like yours--but it's my child--a vulnerable, disabled child, who cannot express whether or not he has a headache or feels like eating a cookie today. A 16 yr old who can't speak for himself at all in what he wants to see happen in his life.
Sadly, there is a tidal wave coming behind my children. When they were little, the statistics were 1 in 88 have autism. The numbers are greater now. When there are larger numbers of these kids hitting puberty, I believe there will more families struggling and looking for help. It does take a village. I'm happy with the village God has blessed my son with.
I hope that somehow my child's journey not only will ultimately get him the help he needs, but make it easier for those coming behind him and for all the workers that fight on their behalf.

--A Tired Mom