No Island Here...

There is an article floating about from HuffPo about things that an Autism parent will never say. (You can see it here.)  At first I didn’t really know what to make of it. I still really don’t.  In the article it talked about how stressful raising an Autistic child is and how lonely.  It said parents are peacekeepers from everyone to the family to school to complete strangers.  It claims we are isolated as parents of Autistic children.  It talks about hurtful comments.

It gives the impression that it is all inclusive, that all parents feel that way.

I don’t.

Maybe I don’t have guilt over meeting my son’s needs because I only have him.  I am able to devote my time to him without “worrying” over “unfair” treatment to siblings.  My issue with this claim is really simple: empirical research suggests otherwise.  Research shows that NT siblings are enriched by their lives with their SN sibling, not hampered by it. They are more open and understanding of those who are disabled and more likely to help their peers.  They also harbor no ill will towards their SN sibling for any reason.  Imagine that: NT siblings of SN children RECOGNIZE that they are simply different in what they need and support how things happen at home. They get it and understand it. They also often grow up to help support their siblings in their adult life, making sure they have what they need.  So, why would parents need to harbor this “guilt”?

I’m not a peacekeeper. I don’t try to make everyone happy nor do I care to. I don’t have the time or energy for that. Frankly, I don’t give a rat’s arse what some stranger in the supermarket thinks of us. It doesn’t really affect me if they are that shallow and judgey. We don’t know them. It’s a reflection of them and their character, not us or ours. Our life will go on as usual. I don’t “try not to look bothered.” I’m NOT bothered.  I also will not be a peacekeeper at school. That’s just straight up push-over nonsense.  I will not allow ANYONE to walk all over me. I will not appease them to make them happy. It’s their task to make me happy. Plain and simple. If your school isn’t making you happy, get a lawyer, learn your rights. I also don’t try to keep peace in my family or with my friends. If they can’t respect my views and how I do things, then we will spend our time with someone who accepts us as we are. We won’t be run over by anyone because they are “offended” or upset by something we do. (Thankfully this isn’t anything I really have to deal with.)

Maybe that author is isolated, but I sure as hell am not.  You see, I put effort into my relationships with family and friends to maintain them and keep their value.  Do I compromise myself in the process? No. Just read my last paragraph.  For every one person who has dropped out of our lives we have gained 10 or more who are more than happy to share our lives. My friends and family have all done what they can to learn about my son so that they can support us however they can. We have some real people of value in our lives. I have also found my way into a larger community of people who share my experiences and are also raising an Autistic child (or 2).  I have never felt isolated.  I never will. I also don’t like the author’s assumption that my son isn’t part of the social world. He has friends. He loves people. He’ll chat the ear off anyone he knows. He plays with and shares interests with his friends at school.  We are also very close. We are not “isolated” as if we are two strangers living in the same house. My son will find a way to talk to me.  Communication is not always speech. He’ll write. He’ll draw. He’ll create. He tells me everything. Sorry, no isolation or lack of social interaction here.

Do I hear stupid things in regards to my son being Autistic? Sure. But it’s a teachable moment. Education is the single most powerful tool in the world. I also hear hurtful things about me, my parenting, and even my weight (how I need to gain a few pounds, for the record I’m healthy and fit and at a perfect weight). I get assumptions all the time about how because I’m deaf I should be dumb. Have I heard, “He doesn’t look Autistic…” You betcha. It boils down to the ignorance (meant by the true dictionary definition) of the person making the comment.  They simply do not know or understand.

Is raising an Autistic child stressful? Sure. Just look at how we are treated. Look at how anyone with a disability is treated. Time and time again, day in and day out, we are treated like we are less than human, not worthy to be alive or tended to. We cannot get the help we need, the services we deserve.  But that doesn’t mean it’s unbearable or too much to handle. I don’t think raising an Autistic is that hard, frankly. He’s just another kid. (See here.) Able and capable of doing what all other NT kids can do. We just do things differently. Our routines are different. Our needs are different. It certainly isn’t this down-in-the-pits, oh-woe-is-me, horror.

I do not worry about the future. My son will be just fine. He will live where he chooses to live, be it here or his own home, doing whatever he wants to do with his future. He is well loved by so many. Since we are not isolated in any way, socially or geographically, I have no concerns over anyone being around to lend him a hand when he needs it. This holds true whether or not I am here or not. I know he will be ok. I have confidence and faith in him and our circle. After all, we started the foundation to his own self-determination long ago. The seeds of self-advocacy and independence are well planted. What do I need to worry about?

We don’t "suffer" anything. We enjoy life. We are whole, complete, even content. Is it really that hard to believe?

Changes in the Wind

Ever have that moment where you are just sitting on the couch and have so much swirling in your head that you feel like it's going to explode?

Yeah. That's me tonight.

So I decided to write. Whatever comes out, comes out. :)

There is so much going on, so much to say, so much to think. It's very overwhelming.  We have a lot going on here on the home front.  Too much.  It's making me somewhat of an emotional mess.

On the plus side I did get to take the kiddo to a new psychologist this past Monday.  I took him to an Autistic focused clinic that is known for its residential treatment program.  I'm not putting him in residential treatment, its just known for that and has some top notch specialists.  That's exactly what we need...

The office was two hours away but lets face it, I'd drive to California if I needed to.  It was nice. We sat there with the intake psych for 2 hours covering absolutely everything you can think of, going over every detail of our lives, from structure to sensory needs to sleep to behaviors to you name it.  She asked great appropriate questions. She really took her time with us.

In early April we get to go meet with the psychiatrist there, discuss his current meds, and figure out the outpatient treatment plan.  I'm really hopeful that we will be able to finally get somewhere and get this kiddo the help he needs.  I'm so tired of watching my son struggle like this.  He shouldn't be.  He's such a happy, well loved child with so much going for him.  I will write more about this process later.

The influx of appointments and dedicated needs for him is absorbing a lot of time.  As many of you know, I returned to full time work not too long ago.  I made the painful and tough decision last week to withdraw from that.  My job has been really fantastic with the transition and since it is with the Federal government at the local VA hospital, they are able to make the accommodations I need and are allowing me to become intermittent.  So I will be able to work a couple of pre-scheduled days a week.  This will allow me to have the flexibility to do what I need for my son.  There are so many phone calls and appointments to be had when you are trying to get things set right!  I will sub at the local schools to fill in the voids.

It seems like a lot, right?  The plus side to this is that since Sparky now rides the bus every morning and every afternoon he won't see the variance in my schedule.  Considering how well (not!) he does with the craziness this is a really great thing.  Everything will stay the same for him, stay consistent.  It's my world that will go nuts! :)

Of course, he will notice when he wakes up and I'm still here in the morning (I presently leave around 7am for work and he's usually asleep at that time).  He will no doubt enjoy that. I know I will!

In the long run it's all for Sparky and that's what gets me through all of this.  He is my focus, as he should be.

This change in schedule will also hopefully allow me to get back to running again.  I could use the movement as it really helps with my migraines.  They are a little out of control right now.  It will no doubt do wonders for my own mental health and what is left of my sanity... ;)  Then I can create my game plan to get the kiddo out with me.  On his scooter of course. :)

So many changes going on around here.  In the long run, it is what is best.  I just have to keep reminding myself of that. I've said it before, and I will say it again in closing: We adjust, we adapt, we overcome. :)

Dear Teacher

On one hand I can understand how innocent you think your project is.  Just send home a paper about ancestry and ask kids to have their parents fill in the ancestry for mom, dad, and both sets of grandparents.  They return with it, you have a great class discussion, everyone learns something.

I have one problem with that. The traditional mom-dad-kiddo family is not so traditional any more...

What about students in those non-traditional families? Those in foster care? Single parent households? Adopted? Kinship care? Protective custody?

What about them? They may not know. They may not ever know.

Did you think about the families who had to deal with parents who’s rights were revoked? Families who were abandoned? Children in foster care who will never know anything about their birth families?

Imagine my shock when my son produced a family tree paper asking for his family ancestry. Imagine my shock when he asked me if he had a father and why he couldn’t remember him.

Let me share something with you, you can’t spring something like this on families and assume all will be well.  My honest response was not pretty. Truthful. But not pretty.

It shouldn’t matter. Honestly, I didn’t want to really discuss it because it shouldn’t matter. He technically does not exist. But thanks to you... He now does.

My son isn’t alone in how much he struggles.  Many children, disabled or not, struggle mightily.  Can you imagine how the child without one or both of their parents feels when they bring this paper home and can’t fill it out?

That is the case with us. Technically, his father does not exist. He is not a conversation that happens.

You see, a number of years ago the court decided that he was, in fact, a rather crappy and immature human being and revoked his parental rights. They saw him as unfit if you will.

You read that right, the court revoked his parental rights to his child. Not that he ever wanted anything to do with the kiddo...

Let that sink in.

I’m sure you’ll feel mortified when you read my note and find out that his father’s rights were revoked and that until now, he didn’t even know he should have one. He is not a topic of discussion.

The kicker? I guess they really don't share custody information despite saying they do and requiring me to prove it to the school with a copy of the order... Well, so much for that.

I’m really surprised that you would make such a basic assumption about families in this day and age.  At least warn the families that such a project is coming home. Let the family prepare for how to answer those questions or to opt out.  It’s really not something you can spring on someone like that.  I know I’m really bad at making things up on the spot...

It has really opened some wounds for me in many ways... The kiddo is struggling enough and now he knows his own father couldn't be bothered with him. He doesn't know why but I do. I won’t write it here because it’s reasoning that needs to come directly from me to my son, but I will comfortably say that he needs to burn in hell for what he said to me and the language he used...

These kinds of questions, especially without any preparation, can (and have) become a serious issue in a household like mine.  It’s not a subject that can be taken lightly or easily.

I went to Facebook with this because I was so upset.  My concerns and upset were shared by many from different backgrounds. I have adopted friends who especially felt the pain of it having done these types of assignments in the past but were left invalidated by it.  

Every family is different.  Family dynamics are different than they used to be.  Teachers need to be sensitive to these ever changing dynamics.  Teachers need to respect and be sensitive to how families operate today.  We long longer have the dad-mom-kiddo norm.  It is simply no longer the norm.

Please, be more sensitive to the culture that exists today. Adjust your thinking and ideals to match the students you serve in your classroom.  You owe them that much.

I leave you with this AMAZING video that was shared with me.

Watch This Guy Misspell ’Father’ At A Spelling Bee For A Beautiful Reason

I know I couldn’t stop crying.

Under Siege

A feeling.

A feeling like nothing you have ever felt before.

All consuming. Eating you. Creeping though you to cover every last inch.

Nothing can stop it.

It numbs your touch.

It makes you weak.

You shake.

Tremble.

 

Trying not to fall.

The world starts spinning.

So dizzy...

The merry-go-round doesn’t stop. 

You hold still. You can’t close your eyes. It only gets worse.

You fight the light.

You fight the sounds.

Every movement. Every step. Every breath. They just bring more pain.

You start to sweat, yet you are freezing.

You brain just seizes.

You can’t think.

You can’t process.

You can’t function.

You press on knowing you can’t quit. You can’t pause. You can’t stop.

Nothing helps. It doesn’t end.

Suddenly you feel nothing. The buzzing creeps through your body from your fingers and toes rising like a great flood. You go numb. The whiteness creeps from all corners of your vision and you’re blinded.

Then it passes. The world returns. The pain continues....

This is my reality.

-------------------------------

I don’t often write about me. I write about my son. Our journey. After all, this is what it is all about. I’ve been hearing the assumption a lot lately that life has to be so difficult or so hard raising a child with special needs.

Nope.

Living with a migraine/seizure disorder is hard.

Waking up literally every day of my life with a headache is hard. Every.Single.Day.

Waking up every day with some level of fear over what the day will bring.

The only variance I have is just how bad it hurts. Some days it’s an annoying twinge. Other days it’s a full on attack.

If I wake up and I’m already under attack I can pretty much guarantee it will be a day from hell.

Nothing can alleviate the pain, the dizziness, the nausea, the sensitivity.

Any sudden movement will threaten to send me spiraling to the floor.

There are moments I pray for a seizure. Why? Because when my brain gets stuck and I’m completely numb it is the only relief I will get. The pain won’t go away, but I can function again. Sometimes it takes minutes. Other times, hours.

I don’t get time outs. I don’t get sick leave. I don’t get to go hide in a corner.

I am a single mom. My son needs me. I am on duty 24/7 no matter what.

That, my friends, is hard.

Not my son.

Not Autism.

Chronic pain.

Of Lovies and Comfort...

I was sitting here on the couch with the kiddo last night, watching Tom and Jerry for the 342,892,758,729,514th time this week and for some reason my mind went back in history. I had been having the kind of day where I just kept seeing him in me.

When I was a baby I had a Pooh bear who I could not leave the house without. My mom had told me stories about how upset I would get and the meltdown I would have if he was ever left behind. I had to take my bear anywhere we went.

I went back to look at photos and my Pooh bear shows up in so many of them. I really did take him everywhere... He was with me while I was sleeping. He was my “baby” in the toy stroller. He was sitting next to the mud puddle watching me play. He was often tucked up under my arm. I’m not ashamed to admit that he went to college with me. Even now, he sits in my bedroom watching over me as I sleep.


(Awww.... Yeah, I know.)

If you look closely at the picture below, you can even see the stitching that my 5-year old self did in giving him a new red shirt and black nose.

I remember losing him one fall, long long ago. I was devastated. It was literally the worst thing that could happen to me. I searched everywhere for him. He was gone... I spent the winter beyond depressed, upset that my beloved Pooh was gone. I probably drove everyone to insanity constantly asking and lamenting over him. That spring I was outside playing and kicking around leaves from the leaf pile we jumped in just a few months before. I kicked him. I was beyond excited! I ran into the house with him just screaming. My mom wasn’t so thrilled but (blessedly) washed him and tried to salvage my bear.

(My bear today:)


I will never forget the day a couple of years ago when I was sick with a migraine and couldn’t even get out of bed. I was out and lost to the world, unable to move, breathe, anything without the room spinning. I recall my arm being moved, something being tucked up under it, and hearing footsteps creep away...

I looked up and discovered that Sparky had literally scaled the wall, plucked my Pooh bear from the high shelf he was sitting on, and placed him under my arm for comfort. I asked him why he got Pooh down. He said simply that because he was my bear and I was sick, so I must need him for comfort.

Wow. Just wow...

(No empathy my arse...)

Not once had he seen me cuddle this bear. Not once had I mentioned anything about this bear. He just knew, on his own, what the bear signified and decided that I needed him. He was about 8 at the time.

Sparky didn’t have anything that he was attached to when he was a toddler. He was three before he found something that had that affect on him. Once he found it though... Oh man... I got a taste of what I had put my poor mother through.

My son had come across a stuffed frog at the day care he attended. It was already well loved and was missing an eye. He hated leaving that frog behind every day and would have a major meltdown every day when we left. It was always the first thing he went for when we arrived in the morning. After about 2 weeks the day care staff gifted the frog to him because he loved it so much.

That frog went everywhere... He slept with it. It went to the store. It went to the doctor’s. It went to Grandma’s. It went to parades. It went to the beach. It even still went to daycare. It went everywhere with us for years. If we ever forgot it (which was rare) we had to go back. It was like he couldn’t function without it. I don’t think we ever lost the frog, I was very careful about that knowing how heartbroken I was by my missing Pooh bear that winter.

Over time he added to the posse who left the house. We added in a red puppy and a raccoon. To this day, the raccoon (also the first animal he’s EVER named) is the one he takes everywhere.

(The puppy, the frog, and the raccoon- all ninja’d out of the kiddo’s room while he slept:)

To this day his animals still live just as well as my Pooh bear does. With us in our rooms, by our beds. The frog, the puppy and the raccoon all well loved. And Pooh bear, threadbare and also well loved.





(Editor’s note: I feet it appropriate to tell you that I wrote this whole post with my Pooh bear tucked under my chin. I came downstairs with him in my hands and Sparky looked at me and asked me why I had my Pooh bear. I told him I just need him. He smiled and kissed my cheek. Love this kid!!)

Big Steps

As many of you know I have returned to work for now. We have to do what we have to in order to make ends meet right?

Well with this we've had major changes.....

Last Friday I had off so we did our test pilot and put the kiddo on the bus for the very first time ever. If you follow my page at all you'll know it was a blazing success!! For those of you who don't, despite all the anxiety on everyone's part, we prepped and planned very well. He came off the bus grinning ear to eat and saying that it was fun!

The bus he rides on is a special designation bus. It only has special needs kiddos from his school. That's it. No mixed population. So we thankfully get to avoid all the bs that goes with bullies. Since he lives on the other side of town and the school he attends isn't his home school (the same is true for the others on the bus) we also lose any weird stigma. These kids simply live elsewhere.

So I get off work at 4 now. I think this bus thing could work since his official drop off time is 4:14 pm. Even if he beats me home it won't be by more than 5 minutes. So begins our next round of prep. Getting him in the door without panicking if I'm not here.

Before you get all sweaty and upset with me, know that he can definitely handle it. He manages just fine when I'm sleeping till noon on lazy Saturdays. He is actually really excited over the prospect of being here by himself and proving some responsibility. He can manage the door locks and playing a game or watching TV till I get home. Even if he has the munchies he can also get himself a snack. He wants to prove he can stay home alone while I go to the store. The jury might stay out on that one for a long while but we'll see.

It's all good.

So I've been working with him on unlocking the door and what he needs to do when he gets home. His BSC has made some cards at my request to walk him through what to do if he beats me home. He's getting a key. His teachers, BSC, and Grandma are all on board and ready to test this out this week (Grandma will be meeting him here at home this first week, helping to walk him through what to do, while I time myself home).

Sunday night, plan in place, start date in T+2 days and it hit me.

I have no house phone.

What if he needs to call? What if he can't get in? What if he just needs a mommy eta time check?

Fudge.

Insert two frantic days of 'now what?!?!' here.

I've never had a house phone so I don't even know if these lines are any good. But I investigate anyway. $10 phone services exist right?

Wrong...

Upon closer inspection they aren't really $10 and some even interfere with home security systems. Well that doesn't help. I'd need a real, traditional phone line put in.

Mobile phone? I do have access to a new phone from a friend. Perfect.

And.... Holy crap are the plans expensive. Even the prepaid!! I can't add him to my line very easily because I have the ancient nonexistent plan from Verizon that gives me unlimited data that I will never give up. (Over my dead body!) I am still unclear on if it could be added to the iPad, also Verizon... Still investigating.

All this stuff takes too much time!! I need something ASAP!!

So I start looking at apps. Google voice (which I currently use for voice mail), Talkaphone, Skype...

None will work because they won't let me call myself. Ugh!!!! I went to bed very frustrated last night. So I sent out a call for help.

I got a lot of suggestions. I got some offers of free phones. Nothing that would really quite work. And some I just couldn't implement fast enough. (Phone offers are on standby....)

Then a dear friend (you may know him from Blogging Lily) clued my blonde self in to a brilliant idea.

Use a separate Skype account.

GENIUS!!!

Who doesn't have several email addresses sitting around collecting dust? I sure do!

So I set one up for him (I already had one). I gave it a password the kiddo would remember. I logged it in on my laptop. Shazam!!!! It worked! We did a test call to the account I already have and the kiddo nearly came out of his skin with excitement!

Hmm... Will it go on the iPad? .... I look... Holy crap on toast it will!! So I set it up there. Once again the kiddo's skin peeled off in his excitement.

Wait! The phone! My old phone travels to school with him and he gets it for rewards to make videos or whatever. It basically runs like the iPad so it's usable. Internet over Wi-Fi.... I log it on... It works!!! I think he might have passed out.... ;)

I think we are covered for now.

He's growing up so fast on me.... Please pray for my sanity this week. :D