Sunday, 8 September 2013

Disgusted

That is the word for what I’m feeling- disgusted.  I have continued to follow the story regarding the woman in Michigan and the attempted murder of her autistic daughter- of course I have, I read this woman’s blog, felt a “connection” to her, and remain in shock that this happened.  And I would venture to guess that much of the autism community is feeling the same. 

If you are on the outside looking in on this situation, I can see how you might think that the autism community is “supporting” this woman, even find it disgusting.  I think that this view is  huge misconception of what we, as a community are feeling.  I am about to turn off notifications on “Status Woe”, her blog, because I can no longer stand some of the horrific comments that keep appearing.  It’s a war between autism parents, autistic adults, and some other morons that are there just to make the whole situation worse. 

The autistic individuals are accusing the autism parents of codoning murder; if the victim is autistic.  Speaking from my personal point of view, this could not be further from the truth.  My mama bear instincts are stronger than most and I do whatever I can to protect my two autistic children.  The last thing I can ever, ever imagine is hurting either of them.  They are my world, and I would venture to guess that this is the consensus among parents in the autism community.  Especially those who are online talking about this issue- these are parents who have made the effort to reach out for much needed support, treatment strategies, behavioral strategies, and other educational resources.  And many of them are expressing “empathy” for this woman- NOT for her act, which is certainly not one to be accepted or supported, but for her SITUATION, what led to the clear mental instability that caused this horrible decision.  Because we are all frustrated. We are all lacking the resources we need to help improve our children’s lives.  I am going to repost some comments- please gird your loins, and understand that I am posting these to make my readers aware of the disconnect that exists.  P.S. Don’t let your kiddos near this, the foul language alone is upsetting, the content, well, see for yourself.
1.     Adventures in Autism says:
I doubt that as you were growing up that you put people in the hospital with your violent outbursts. I’m sure it is really not the same situation. I don’t know this woman but, as a mom with a child with autism, I can understand some of the hopelessness you feel for you child because you love them so much. The despair when you can’t seem to help them when they are in so much pain. The autistic adults around the web that are commenting on this story in different places…I doubt they had this version of autism. This isn’t about murdering an innocent child because you hate them or you think they are a burden. This isn’t about getting your own way. This is a person who has spent years fighting for her child. This is about having the rug pulled out from under you when the plan you have in place is cancelled with almost no time to plan for something else. This is about a desperate person in the pit of despair. If you can’t feel compassion for her then I hope you never have a child with special needs because you need empathy and compassion in large abundance in order to constantly meet their needs while often ignoring your own. It can take over your whole life.
Fuck you lady.
You don’t know anything about our “versions” of autism. You don’t know how and if our parents fought for us. The only thing you can know, is that we survived. We survived, and some of us are in worse shape than others, despite surviving, and we’re angry, because this girl, Issy, might well NOT survive.
We’re justifiably angry, because one of our own might well have died because her mother “loved her so much.”
I’m just glad my mother obviously didn’t love me that much, if the ultimate sign of love is attempting murder on your autistic child


    • My 3 Sons says:
How dare you.
Not seeing the good, only the negative? You think there are such amazing supports and such understanding of ASD children these days? Oh, its such a small trial, to raise a child like this. How could we be so weak, so stupid, so very lazy? NT parents don’t understand sacrifice, don’t honor diversity and just want a easy spoiled life. How awful and selfish we are! We just don’t try hard enough and we tire so easily. We are so busy living for ourselves, we don’t know what love really is. Please connect me to the plethora of options and treatments for my son. (I’ve never even tried to find any.) Then come over and show me how to raise my son correctly because I am sure you will do it with more knowledge and grace than I can muster
2.     From The Trenches says:
As a parent of an autistic child, we have a perspective that others will never understand. All any parent wants for their child is that they lead a happy, healthy and productive life. You never forget the devastation you feel when you sit in the doctor’s office and get the diagnosis. Nothing is ever the same again. Now you spend every waking minute trying to find the ‘silver bullet’ that leads to your child’s recovery. Recovery means that your child will grow up and have friends; they will not be bullied or ostracized; they will go to school dances and play in sports; people will not stare at them; they will be able to hold down a job and someday get married and have children of their own. These can be lofty goals for many.
We spend all of our time and money chasing that elusive dream that one day our child will be mainstreamed. Unfortunately, for many parents, the day comes when they realize that their child will never lead a ‘normal’ life. You must always be there to provide for and protect your child -until the day you die.
I think that day came for Mrs. Stapleton. After 13 years of chasing the dream, she realized that this what is in store for her daughter and her family. She could not help Issy and no one could help her. With nowhere to turn, I think she was terrified that her daughter was going to end up taken from her and institutionalized. This is what Alex’s mother saw, her son being restrained for hours and in her words treated like an animal. These women believed that their children needed to be spared from any further pain and suffering.
Do I condone such an action? No. However misguided this may be, I think they believed they were protecting their children from a very cruel world. From the viewpoint of a parent of a special needs child, it is indeed a cruel world. Many of the posters here are confirmation.
    • Alexis says:
Oh, pffffft. Your special snowflake, ooops, I mean special needs child is no better than my healthy child . You chose to have him/her – deal. And stop expecting hero status and a free pass to murder because OMG, stress!
tdspringer says:
Alexis, you are a clueless idiot. Tell you what….one of the mom’s on here with a difficult to deal with autistic teen will send you her child for a week…..then you can maybe comment with some intelligence….if you can still comment.
    • Alexis says:
I don’t want anyone to send me their kid. I don’t care about their ‘special needs’. I don’t want to ‘walk in their shoes’. I couldn’t give a flying feather. They have support, they have assistance, they even [according to some of you] have a free pass to murder. What more do you people need?? I suggest you all get off social media and parent your brats.



 loveexplosions says:
Nobody is perfect? Seriously? Did you really say that she, “snapped”? When I “snap”, I bark at my husband, I let someone have it on the phone, I cry. I don’t try to kill my children. She can’t take the blame? Someone that changed the rules is to blame? Um, no. She tried to KILL her daughter. She IS to blame. Mothers that love their children, do not try to kill them. No matter what.
Erin says:
Exactly!
Jenny M says:
Exactly. I can’t believe people are making excuses for this!
Autism momx3 says:
Do you have a profoundly autistic, violent child? And then hit road blocks at every single turn? While still caring for said child? Who are you to judge a woman whose life you cannot even begin to comprehend?
@Autism momX3– I’m not going to share the most private details of my child’s ife with you, an out of touch stranger, on the internet. Parents that are more interested in the welfare of their children than in fame/sympathy grabbing don’t go around publicly characterizing their children as violent. Who am I to judge? Well, I am a parent that would never conceive of killing my Autistic child. No matter what. Since you can conceive of murdering one’s own child, you are either not a parent. Or you’re a loathsome parent. Period.
tdspringer says:
Hmm…I see a lack of education here. There is a BIG difference between losing your temper because hubby forgot to put the toilet seat down again and having a psychotic break after 14 years of mental stress, years of physical abuse, and a system which has, once again, torn away ANY hope at a semi-normal life.
As for deciding whether Kelli loves Issy or not…how dare you? READ the blog. This woman devoted 14 years to helping her daughter try to have a life. To 14 years of FIGHTING the system which refused to give her ANY hope. She allowed Issy to abuse her, take her attention away from her other children (because I guarantee that caring for Issy was more than a full-time effort), and yet she was SO happy when the behavioural plan devised for Issy was WORKING because it meant Issy could have SOME semblance of a life! Then the school ripped that hope away, again leaving this family alone to battle it’s demons. Yes, Issy has two parents. But WHO was the parent who had virtually all of the day-to-day responsibility?? Someone had to work to earn money to pay the bills. Too bad Kelli wasn’t the one with the degrees and the good-paying job.
What she did was wrong. Of COURSE it was. But for all of you to judge her….to say she doesn’t love Issy, to say that she did this out of hate or malice or whatever, YOU lack compassion and empathy and you have NO CLUE what this poor woman was going through nor what she will now have to go through.
Goatsong1 says:
You are right! Thank you.
Goatsong1 says:
Thank you!

3.     Autistigirl says:
As an Autistic of an abusive mother who ended up in foster care for crap like this… My heart and prayers go out to ISSY. She deserves life just like any other human being, and there’s no excuse for someone trying to take that from her.
So, wait, are you autistic?
Rebecca says:
Why yes she says she is!! See! It says so on her crown. I AM AUTISTIC LOOK AT MEEEEE!
Carol says:
Your mother should have aborted you. And now STFU!
nonmouse says:
Fuck you, you POS. autistigirl is angry and upset for a fucking reason. Hell, many of us are. Because for us, this is a reality we might fucking face, being murdered by a carer, and everybody saying they understand why it was done.
The overwhelming calls of “shut up” and the insults show nicely just how much people like you actually care about autistic people. Not one whit, obviously.
Goatsong1 says:
Rebecca, Kelli tried to murder her child. She told her husband she was going to do it. Then she tried to. There’s no excuse for trying to kill another human being. This woman was supposed to be Issy’s protector and advocate.





How do I feel about all of this at this point?  One word- sick.  I can’t read it anymore, I just can’t.  But I wanted to make you all aware.  Not that Kelli was justified, I don’t believe that, not that she is evil, because I don’t believe that either.  I want you to be aware of what both people with autism and parent of children with autism are facing.  Both populations are treated like crap, and frankly treat each other like crap in these comments.  And of course it’s a highly emotional topic for all of us.  But this vitriol is not solving one thing.  And the fact that if these people read the most current updates they would know that Issy is awake and responsive at this point does not change the horror of what was done to her, nor does it change the fact that her mom is going to have to live with what she did for the rest of her life- likely behind bars.  Knowing that she has now left her husband and children alone to do deal with this issue while she will look on powerless to change anything around her.  More support is needed for parents, more support is needed for autistic individuals.  No one EVER deserves to be hurt.  This horrible thing happened, and it’s devastating, but the resulting crap being hurled back and forth is only deepening the wounds for people who can relate to this situation on all sides of the fence. 

To the adults with autism who are upset and commenting on the blog- I hear you, and suspect that most of the parents who are posting hear you as well.  In no way did Issy or anyone else ever deserve to endure something this awful.  I completely agree that there is no excuse for murder, no matter what the circumstance.  And she could have called 911, she could have called a family member and said “I can’t” and any of those options would have resulted in a relatively good outcome for all.  That being said, I know how desperate I feel to HELP my little boys each and every day of my life.  We  have been fortunate thus far- right now they have what they need and I will continue to move heaven and earth to give them the best life I possibly can.  It is my responsibility and honor to do this for the children that I carried for 9 months, they are my heart and my greatest accomplishment. 

On the flip side, I pray for my younger son to communicate with me every single day.  He is frustrated, he is only 3, it’s going to get worse if I don’t find a “better” way to help him.  I am scared, so very scared for him.  I am scared that I am doing it wrong, I am scared that I did something wrong and that is why he has these challenges.  I am depressed that all of my efforts have not been more effective.  I repeat, he is only 3.  As the person who knows and loves him more than anyone else on earth, the thought of him existing in this state breaks my heart.  I hate sending him to school or daycare because I feel like he won’t be able to make his needs known, I fear that he will be treated inappropriately and I will never know, because once again, he can’t tell me.  He is not aggressive, at all, if anything he is my squishy lovey teddy bear.  I do not know how I would handle it if my precious boy gave me multiple head injuries.  I just don’t know.  I know that I would be seeking help from any and all resources available.  If I did this for years, and years, and years, thought I finally had a plan in place for him and then was told that in fact nothing that I had spent the last number of years working for would ever come to fruition, who am I to say how I would react?  Because I don’t know.  My “guess” is that I would go home and bury my head under my pillow, cry for a day or two, steel myself and do what needs to be done.  That’s what I do when I experience a set back now.  I can’t say what happened in this case, nor can you.  We can AGREE that it was horrible and wrong.  I think that all the moms and dads are asking for on the blog is the same degree of respect for what we try to do for our children with autism that you want for being a functioning and deserving human being.  We all deserve respect for the challenges that we all face on a daily basis.  You have my respect.  I see autism in its “purest” form every day.  I shield my older son with auditory sensitivities as much as I can, I spend hours with my younger son going through every item in the cabinet until I can figure out what he wants.  And like I said before, it’s my privilege.  Because I love them.  I would never be able to accept, let alone condone someone hurting my babies. 

The hate on this woman’s blog really needs to stop.  It is too heated for any solution or resolution to ever occur.  It is not productive.  I would rather hear more from people with autism about how they handle the world around them, especially sensory issues.  I would rather know what I can do, from someone who has experienced these issues, to help my children feel more comfortable in their surroundings.  That is something worth discussing.  And we can all pray for Issy.

Thursday, 5 September 2013

On A Lighter Note--- My "Conversation" With Nathan....

Those of you who personally know my little boy know that this shows great progress.  I was working in my office and he got me all the way to the kitchen and told me what he wanted....having a child with autism teaches you so much.  Such as how to have a full conversation without words (or just a few)...enjoy!!

An Absolute Tragedy For The Autism Community

This is one of the most difficult posts I have had to write. But it needs to be said and people need to be informed.  The past few weeks I have posted a few times and been in a bad place- depressed, anxious, scared, feeling helpless.  And my children are 3 and 6.  I have barely begun this journey, which is a thought that overwhelms me too much to consider on a daily basis. 

I’m sure that most of you recall the story of the mother who attempted to kill her autistic son with a sleeping pill overdose and when that didn’t work, she stabbed him to death.  It’s a horrendous story, not only for the evil act perpetrated by the mother but for the lack of help that she felt was available to her.  That’s one such story.

Today I need to tell you another one.  Of a well-respected, autism advocate, blogging mom who is about to be charged with the attempted murder of her 14 year old autistic daughter.  They were found unconscious in their van with charcoal grills burning inside and the windows rolled up, thus, carbon monoxide poisoning.  I read her blog, not all the time, but I read it.  It is very popular.  She is well-educated; her husband is an elementary school principal.  Her community was involved and supportive.  But her daughter had a propensity for extreme violence, making a peaceful home life impossible and educational placement of course problematic.   When I think about the fights  I take on every single day for each of my boys and add another 9 years to it, and add violence towards mom to the equation, it makes my heart sick.
A little more about this family:



Here is what I can say with confidence.  These feelings do not happen overnight, this type of desperation does not happen overnight.  Her love for her daughter is clearly written in post after post after post.  Can we call this woman an evil person?  I personally don’t think so.  She did a horrible horrible thing, and my heart goes out to her daughter, her husband and the rest of her family.  Did they see this coming?  I am sure not.  So if I feel blind sighted right now, imagine how they must feel.  And I am not alone in the autism community; below I will share with you just two of the MANY reactive posts I have seen today:


 Stories like these demonstrate the darker side of what can happen to even the strongest parents faced with the challenges that autism brings.  Fighting every single day to give your child what they need and DESERVE is exhausting, it’s disheartening, and your heart and spirit will start to break after a while.  Rarely, if ever, is a needed service provided without fuss.  The parents dealing with these issues feel isolated, they feel powerless, and just when things may seem to be heading in a good direction the rug can be pulled right out from under them yet again and they are right back at the beginning.  This happens to me over and over again. 

I want to say this to every single individual who has ever read my blog.  Please keep reading.  Know that my frustrations are very typical of what other autism parents go through, that my depression, anxiety, fearfulness, and occasional hopelessness are not unique nor are they odd.  Please accept my family’s life as reality and know that we are some of the lucky ones- we have had people back out of our lives, but the vast majority of people have supported and loved us.  And our children.  To those of you who contact me regularly, please don’t stop.  Even if I don’t reply sometimes, your words are like a mental burst of energy.  You are building me up to deal with what I need to do.  You are helping my children.  I have other autism parents that I at the very least, instant message with every single day.  We need to keep doing this, and hearing each other.  We need the reminder that we are not alone, that someone understands, that someone is there.  .

I am not suggesting that this could happen with any of the families I have been in contact with (although if I’m being honest- it just did, right?)- what I am saying is that we can all imagine and to a certain extent even empathize with what she was feeling, with what drove her to this point.



Look at her blog entry from September 3rd:


Look at what happened on the 4th. It doesn’t take a rocket scientist to connect the dots. 




We need to be there for each other.  And we need to pray for this family.

Tuesday, 3 September 2013

Nate- New Interventions, Side Effects, and Hope

Just wanted to give you all a quick update on Nate.  He has been on his fluconazole and flagyl for approximately 10 days now, and the mitochondrial cocktail for 5 days.  He is taking all of these like a champ.  We have gotten very lucky in that regard as he has accepted them all in his juice.

Side effects, let’s see.  Sorry squeamish readers, but he is having REALLY stinky grainy loose stool.  This is a sign that the fluconazole may be working.  He also has been extremely stimmy, which is another sign of what is called “die-off”, basically a worsening of those symptoms because of the by-products of the yeast dying.  So it’s a negative thing that hopefully will lead to improvement in the long run.

As an added bonus, Nathan has not slept through the night since, umm, last Tuesday night I think?  He is my sleeper, so this really stinks.  This could be one of two things- more die-off symptoms, or something in the mitochondrial cocktail is having some effect.  Only time will tell if that is a positive or negative effect.  It could be “awakening” of some neural connections, or it could be that one of the supplements in the cocktail is very activating to him and cause some hyper stimulation.  We need to wait it out for now, as no matter what is going on, this side effect could be a transient one.  Or, if there are a lot of other more positive effects, this side effect could be helped with melatonin and may be worth dealing with.  Either way, when he is awake at night all he wants on earth is to be “squeezed”.  Arms, legs, feet, you name it, he wants deep pressure.  He has also been more fussy- possibly lack of sleep, but he also seems to be over-stimulated more easily.  He had a rough time at his grand mom’s house yesterday- lots of crying, didn’t eat a thing, grabbed my hand and led me to the front door (time to leave mom), etc. 

Have we seen anything really good?  John and I are saying this- Nathan is having a “good week”.  His speech, not necessarily increased, but definitely more consistent.  His little attitude is alive and well.  My dear John, devoted daddy that he is, continues to try for “night night” from Nate each night.  Tonight, he was leaning over Nate while he did this, giving him some deep pressure, and Nate pushed his leg onto John’s arm, smiled behind his thumb, and instead of night night, said “kick”.  Little stinkerJ.  Also, the other day, I handed him his juice and he just very casually said “thank you”.  These are definitely positive things.  And that is as far as I am willing to think right now.

I went through another phone interview with NIH today.  It made me cry, what else is new.  They were asking developmental questions for a good 30 minutes.  How often does he nod his head yes- never, how often does he wave- never, does he use at least 5 words a day- sometimes, how often does he respond to his name- sometimes, how often does he engage in imaginary play- never.  OK, so I have to admit that the interviewer made me laugh twice.  She would ask all of these serious questions to which she received pretty depressing answers, and then would wrap up the line of questioning (and in her defense she was clearly reading from a script) with something like “do you feel that Nathan uses the typical amount of language for a child his age?”  Or the kicker “have you ever had developmental concerns about Nathan?”  Seriously?  Nah- he's just introverted?!? 

So that’s where we are for now.  Mommy is finally getting a bit of relief from a migraine that was closing in on 6 days.  Which has been happening about 3 times a month the past few months.  I got a new migraine script today from my PCP and a referral to a neurologist.  In addition, after listening to all that has been going on she insisted on writing me a prescription for Xanax (HA).  She was like “and why do you not have this?  Like every day?”  That part was a bit of a joke, but she’s right, there are times when it’s just necessary and contrary to what I would like to believe, I am not wonder woman.  Just feel a bit sorry for the kids, because this mama is so drug naïve that if I take it at bedtime, it’s going to take a lot of noise to wake me up!  Anyway, hopefully this will help.

Sunday, 1 September 2013

Respite is Essential for Autism Parents




Time to regroup.  My blog is a very personal place, and because of this, I try to be as open as possible.  So it’s important that I say this- I am not doing well right now.  It’s happened in the past two weeks or so and I really can’t pinpoint what has pushed me over the edge.

I am depressed.  As my close friend and coworker said to me this week when I said I didn’t know what I was depressed about, “duh!”  And she is right, I technically have many many reasons to be stressed, anxious, depressed.  That being said, what has changed?  I am not dealing with anything “new”.  Yes, I am starting another round of interventions with Nate, yes, it’s the beginning of the school year, and yes, we are coming up on the two year anniversary of Nate’s regression.  But this is nothing different than what I have been dealing with.  So what gives?

I had my first individual counseling session in a LONG time with our marriage counselor yesterday and spent much of the session sobbing.  As I think about it now the tears are welling up again.  The last time I was in that room I was in such a good place, feeling so strong that we basically had our termination conversation.  John and I are going to need long term support- we are dealing with way more in our marriage than most and it just helps to have a “safe” place to hash it all out.  But at this point it’s a maintenance thing, something we can do every 6 weeks or so. 

Even through this session, I just couldn’t put my finger on what is going on.  It’s really weird, but it came back to the almond bread for Nate again.  After my “issue” in the grocery store last week, I came home, resolving to make the bread sooner rather than later- just to get it over with and to prove to myself that my life would not magically transform back to the crisis period it was in when I was doing this in the past.  Let me put it this way- the almond flour has been sitting, untouched, in the food processor for a week now.  I still can’t bring myself to do it.

So I think my feeling of depression may be stemming from the realization that there will be no “end” to this.  When the boys were first diagnosed, I was focused on taking each day as it came, with the hope that there would be “recovery.”.  Well, I guess you could say that emotionally I am settling in for the long haul.  There will be no quick fix or miraculous intervention.  There will be at best, slow progress.  Don’t get me wrong, this is of course much better than no progress- just not what I was praying for.

My parents took the boys for the night last night.  John and I spent our first night in our home without children since Jack was born 6 years ago.  What did I do?  Watched Bridezilla’s, stared at the wall, cried, slept.  John and I shared a meal together, but after that, all I wanted was to be alone. 

Bottom line- I need to accept the fact that I need a break.  That I am burnt to a crisp, have compassion fatigue, am ready to throw in the towel, whatever you want to call it.  Last night was nice, and this morning has been peaceful, but I need to accept more help from family, friends, etc.  I always feel guilty because I am not with my children all day, I am working.  But that does not count as a break.  It most certainly is not a break.  And I am always working on something for the boys while I am doing my job.  I am never, ever “single-tasking”.  The boys can benefit from being with other people, and most certainly they will benefit from having a mommy who isn’t near tears all the time, like I am now. 

It’s time to give some of this over- to my husband, to my parents, to my mother in law, to friends.  This mama is at her breaking point.  I am finally saying it loud and clear- I need some help.

Friday, 30 August 2013

What's Your Definition of "Superhero"??

This is mine.  Natey rocking his borrowed compression vest, weighted belt, and drinking his mitochondrial cocktail with no fuss.  Love. this. kid.

Thursday, 29 August 2013

Nate's Triumphant Return

Nate made his triumphant return to ECI today.  He has the same driver and aide on the bus as last year, which is a huge comfort to this mama.  He did well getting on the bus, except when Mr. Sam made him come back to the front for a picture, that ticked him off but good.




He went on the bus back to the Cisco Center after school, where he stayed until after I got Jack off of his bus at 4pm and we went to pick him up.  Now we have done Mr. Jack’s homework (swimmingly) again, and we have OT for both boys at 6pm. 

This week has kicked this mama’s ass. 

But…….

 
After 6 WEEKS of begging/negotiating/calling/threatenin/cajoling, today we received Nate’s mitochondrial cocktail!  Now, to see if he’ll drink it, and if it will work.  And then, I am going to pass out for a really really long time. The end.