You love someone with Autism, but are they happy?

"I love someone with autism." 

Actually, I love three people with autism. I used to attach a pin to my everyday bag that said that, accompanied by a puzzle piece ribbon. 

Lately I have been focusing on my children's happiness.  I have been observing them to gauge whether or not I am doing a good job facilitating enough opportunities for them to discover what makes them happy in this world.

2 Things

Mutants? Contagion? I just brought her here for a physical......

For the last two years, we have been medical fugitives, only coming out of hiding for absolute serious, mom cure resistant disorders. Despite much resistance and procrastination, I made 3 appointments for the "annual physical." If I want to qualify for respite or for the children to participate in any type of extracurricular activity they need a current physical.

Inevitably, the conversation always takes a turn to that issue, which can not be named. The V word. Vaccinations. It would be great if my kids were up to date, sure no problem. My kids aren't up to date due to my choice not to get my kids vaccinated.

Again.

Ever.

At this point you are either clapping with me or wondering where my brain is.

I used to care about the latter. I don't anymore. I make decisions for my kids based on the information I have read and what I have seen since accepting the red pill.

This is your last chance. After this, there is no turning back. You take the blue pill - the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill - you stay in Wonderland and I show you how deep the rabbit-hole goes. - Morpheus, The Matrix

None of the vaccine pushers are coming to babysit my 3 kiddos on the spectrum or pay any of my bills or support me in anyway, so their opinion is as relevant to me as burnt toast. I realize that by coming out of the vaccine closet, I may lose followers and readers, but it is more important for me to share the sentiment than hide for fear of backlash.

I have a hard time with people who completely lack compassion and just want to bully you into an agenda by calling you stupid. I know I am not stupid, I can read a research study.

This post is not really about the ongoing debate, its about what happened at the doctors office today.

So as usual, I let the doctor go on about her opinion that all the studies refute the connection between vaccines and autism. Me; no comment. She continues, by going after my desire to not see my child die from a childhood disease. I say "my children have been blessed with amazing health and their natural immunity has protected them" and she counters with "maybe they are benefiting from everyone else's vaccine induced immunity." I shrug. She looks at me and I see her eyes roll back and reach into her mental bag to pull out the "big guns."

Now for 2 Things most parents of so called typical, non autistic children never have to hear;

Thing #1
Me: I read the reports from both sides and I just can't be sure that vaccines didn't have something to do with their condition. This is the only thing I have control of.

Doctor: I understand but most of the research says it is genetic.

Me: Genetic? If that is so why is that I am the only one in my family and my husbands family that has children with autism? No one older and no one younger. Wouldn't we see it in other parts of the family if genetic?

Doctor: It may have been a mutation in your DNA that you transferred to your children.

Me (IN MY HEAD): Damn it, there it goes being my fault again.  If I caused the mutation then why couldn't I be an X-Men like Storm and why can't they be like Wolverine, Rogue and Jean Grey?

Me (OUT LOUD): Oh so something happened to me environmentally that mutated my DNA and passed on autism to my kids?

Doctor: Yes. No.... I mean we don't know what caused your mutation, it could have been environmental or anything. We just don't know.

Me: Oh I see.
Me:(IN MY HEAD): We don't know why its all of a sudden genetic, but we know its not the vaccines, that makes perfect sense.

Thing #2
Doctor: Also we want to keep our other patients safe.  If your kids aren't vaccinated, they could pose a risk to other children, babies in the waiting room.

Me: My children rarely if ever get sick. They are in public schools where they are exposed to measles, chicken pox and the flu. They don't come home with it or pass it on to anyone else.

Doctor: --uncomfy smile-- Well our policy is....(she stops and I believe rethinks dismissing me from the practice.)

This is a difficult conversation for both of us.

Me: I know.

I have heard these "2 Things" before. Once upon a time I would have gone head to head with this doctor about the issues and my rights. I am older now and it is not advantageous to me to be right. I'm tired of burning bridges and looking like a lunatic. Any doctor I go to after this will require that I vaccinate my kids, at least I have a history with this practice. I am not trying to recruit anyone to my side, I just ask for simple respect.  I don't want to be a mutant or have mutant kids and the last thing I want is for my house to be ground zero of the next contagion. They already blamed us for a recent whooping cough outbreak (even though they admitted that their new and improved vaccine isn't effective in preventing it.)

In my short time on this planet I have come to realize that there are no guarantees and there are many things labeled as safe that were then found to be quite unsafe.

You may be wondering where I take my brand new twins for well baby visits?  I take them to a sustainable, holistic doctor, who is not covered by insurance, which means, I have to pay him out of pocket. Would you like to know what our last conversation about vaccines consisted of?

Holistic Doc:  We should probably talk about vaccines, what were you thinking of?

Me: I don't want them.

Holistic Doc: Okay, but you may want to consider the Whooping Cough due to the recent outbreak, its fatal in infants and the Tetanus.  The other ones you could really do without.

Me: Okay, I will think about it and we can talk about it next time.

If only I could afford to take all of them there.

So, general public, here are 2 Things I can promise you;

• I won't send my kids to school with your kids when they are sick.

AND

• I won't let my kids use their mutant super powers in public on you regular humans. 

Honestly, that's the best I can do.

A Year in the House

I have come to terms with the fact that it may be a year before I can leave the house. I know, I know, I'm not a first time parent, in fact, I've been around this block before, but with twins its a little different. Not to mention, with the older kids its always been a struggle to go out and I have to admit that during this last month, I have not been out with all five, at all.  And I don't intend to for about a year. In order to accommodate this, I have expanded my internet shopping for basic essentials as well as trying to plan my trips for the 5 hours of older child freedom I have during the day.  Taking the twins out has its own challenges; for example - how the heck am I supposed to shop with my stroller? I can't feasibly put two baby car seats in a shopping cart and actually buy food for a family of 6. So I haven't figured that one out yet. I feel like I am neglecting the older kids and I make them be quiet while the babies are sleeping which is most of the time. My former youngest, now middle child won't touch the twins with a 10 foot pole and she is seeking attention and telling me "no" all the time.

We are all going through transitions, yet I still have to be diligent and proactive with the special ed advocacy or things will fall through the cracks.  I have already noticed a few missing things already. Don't get me wrong, my kids teachers have been great, they all know that I just had twins and they have been very lenient with me when it comes to returning forms and homework, but as many of you who have a child with an IEP, its only worth as much as it is implemented and enforced.

I have to say I am in a weird place right now. There is a strange peace I have at having infants at 36. I don't feel rushed, I am taking it all it in enjoying my time with young kids since it will be the last time. I am also terrified out of my mind at the same time. I function on interrupted sleep if at all and I struggle to find time to clean my house and write. I know that the first 3 months are the most demanding and it won't always be this hard, but I also recognize that with kids its never what you expect, either.

One highlight is that my creative juices are flowing. I am re-focusing the autism non profit and creating an exciting concept that can be implemented nationally.

Autistic and Alone

Over the years I have become hesitant to tell people that I have 3 kids on the autism spectrum. Yeah I know, I have a blog about it, co-founded a non profit about it and frankly my kids are not keeping it a secret as well as I would like them to(that last one is a joke).

My hesitation is due to the reactions I have received over the last 5 years since my youngest was diagnosed; the reactions range from pity to rudeness. As parents we have all had those why me moments and during one such moment I realized that I actually am glad that I have more than one child on the spectrum. Crazy? Not really. You see no matter what happens, they will always have each other.  In school and society they struggle with academics and social skills, and basic acceptance. At home my kids with autism are not different. They play together, tease one another, and accept one another. It would be nice if my son had 

In My House

In my house, no one is strange. Nothing gets a weird eye and no one

Life Goes On

I love to write, but sometimes it gets very difficult to to express what is happening in my life and the lives of those I love. When that happens, I don't write, thus the 7 month gap between post.  But I was busy, I was pregnant.

I have two new additions to my life, I recently (12 days ago recent) gave birth to identical twin girls; Marilyn and Evelyn, so now my brood is up to 5.  Yes 5 kids. I always wanted a big family. Its been rocky; good news follows bad and vice-versa.  I will expand on that in another post, but right now, I am 12 days since delivery and its the first time I have had a mind to reflect on my blessings and these two beautiful little identical angels that have come in to my life. I say identical, but we can easily tell them apart. Evelyn is half the size of Marilyn.  Unfortunately there was a knot in her umbilical cord which limited the amount of nutrients she received in the womb. So far, both are healthy and growing bigger every day, Evelyn has already gained a pound since leaving the hospital.

My older kids they have accepted them in their own way.  My eldest son who is 14 is aware but interaction is limited, I think they are still too small for him to really be interested, my eldest daughter, who is 11 has held both of the babies, seems tolerant, but my former youngest daughter, 8 was very wounded by me bringing two new babies home, its really taken her a week to start dealing with me again.

For the last 6 months I have been asked how am I going to do this. I really don't know how to answer that question. Its a really silly question so from now on the next person who ask me that I am going to say; "Oh I have a 12 point plan on how I am going to do this, would you like to review it?" I know its a little smart ass, but who cares, we all need to get our laughs in when we can.

For today, I will not worry, or get anxious, or fret. I will just be thankful and happy and blessed with my new world and its new inhabitants.

5 Secrets to Successful IEP Meetings

I am procrastinating. I am supposed to be preparing for my daughter's early morning IEP and instead, I am writing this blog post.

I got to thinking about what makes an IEP meeting successful and I came up with 5 things I personally strive for when I walk into my child's classroom. Now remember, I have three separate IEP's to pay attention to, so I have a little bit of experience in this area. Just a little.

Secret 1
Always Get A Draft - Yes, you can get a draft of the IEP ahead of time. Its important to ASK for it ahead of time as well.  Teachers are just like you and me and they can get swamped and do things at the last minute, so you want to tell them you would like a draft to review before the actual meeting.  A good time to ask is around the time you get your IEP invitation.  This gives them time to get it ready and get it to you preferably 5-7 days before the meeting. During that time you can review it, highlight it and write down your questions early. Then you can confidently walk into your child's meeting totally prepared like a pro.

Secret 2
Put It in Writing - How many times have you had a conversation with a teacher either on the phone or in person and you swore you asked for XYZ and the teacher said, "sure, yes, no problem," only to find weeks later that XYZ was never entertained, worked on or done? It happened to me more times than I care to remember. Don't dare bring the XYZ (undocumented) conversation up at the IEP meeting. I'm sure you may have received a response similar to this; "ah well, Ms Flamer, I don't remember us discussing that blah blah blah, we are working on this goal." Does this happen to you? Well not anymore, because from now on everything and I mean everything will be in writing. Maybe you don't have time to draft an official letter? No problem an email will do, or my personal favorite, I write it in the communication book and make a copy of it. If  I don't see any movement in a week, my teachers get a call and a reminder and a copy if necessary. This secret can also be entitled "Get In Writing," as you always want to make sure any promises, proclamations and plans the school makes are in writing as well.

Secret 3
Travel in Pairs or More
I learned this the hard way. Little old me walked into the school for a meeting that I thought was going to be simple, quick, and short. I turned into the classroom to see the teacher, the principal, the guidance counselor, the school psychologist, the speech therapist, the occupational therapist, the butcher, the baker and the candlestick maker. Since this wasn't an official IEP meeting I was only expecting the teacher and the speech therapist. Here were six representatives from the school, who had already discussed what they were going to do with my daughter, ahead of time, with out me, now all talking at me. To say I was just a little intimidated would be an understatement. So from now on I travel in pairs or more. Ambushes are best handled with back up.

Secret 4
I Know its a Pain, but you will Explain
Not all teachers and professionals are like this, but occasionally you will meet the rare arrogant, jackass who gets off on using professional jargon and acronyms like everybody is supposed to know what they mean. A lot of teachers and therapist have had cultural sensitivity training and are aware to not overly tax parents minds with terms they are not familiar with. After doing this for awhile, you do start to understand these terms, but even I, yes I, Miss Know-It All 2013 will ask someone nicely to explain what exactly MDE (Multidisciplinary Evaluation) stands for because sometimes I forget.  As parents, we don't use these terms on a daily basis and its ridiculous to expect us to bring our Special Ed to English dictionary with us every time we meet with our kid's team. So don't be ashamed, if you don't know, but make them explain.

Secret 5
Tell Me Something Good
Yes, I'm talking about the song by Rufus and Chaka Khan (a noted supporter of Autism, I might add). I hate absolutely hate to go into an IEP meeting and hear nothing but what my kid can't do. How bad their behavior is and how difficult it is for them to do AB and C. No, I won't stand for it.  You must "Tell me something good" about my child. If you don't, I will and it will be written in my parent statement that will and must get added to the IEP. Individual Education Programs do not have to be a short story on how behind little Jimmy and Sally are. They can be plans that build on strengths while identifying challenges.  ALL our children have strengths and these things need to mentioned if not promoted throughout the IEP.

These are my 5 secrets that get me through my 3-9 IEP meetings a year. I do have to mention that this year my kids have phenomenal teams and so far I have only been to four if you count the one I am going to tomorrow. For more insight on what goes on behind the scenes check out "What Really Goes on Behind the Scenes of an IEP....."

Please share some of your "secrets" in the comment section, I would love to hear them, I can always add something new to my repertoire.