We all struggle sometimes

In life there are struggles, no one is going to deny that, some are not so difficult and some – some challenge you to the brink and back.  Most people can muddle through without any big issues and others well when we struggle – we hit a wall and we hit it hard.  It can feel like the world is crumbling down on us and we are trying to hold it all together.

Some people can take a step back and regroup ok, some of us require more time and others well we retreat into ourselves, hide from the world even if it means that some of those around us get upset or hurt at our actions.  It’s a defense mechanism – when things get to overwhelming and crazy we tend to hide from it until we are better able to process the feelings and situation.  We are kind of knee jerk reaction people more often than not, we go all in without a second thought.  I guess you could say when we commit to something we really commit – the good, bad and ugly – we are in it up to our eyes.  Problem being is that once we realize just how far into something we have gotten we look like deer in the headlights.  We quickly withdraw into our own little cocoon’s so to speak where we feel comfortable and secure and slowly we begin to try and make sense of things.

Sometimes it means regressions, sometimes aggressions, sometimes we stop talking much and seem distant and moody.  We struggle to hold onto things while trying to make sense of the rest of it.  Think of a Kangaroo and her Joey in her pouch – when the world is crazy and the little guy is scared he hides out in Mom’s pouch while he calms down and tries to make sense of the big noisy busy world.  He feels safe, secure and like nothing can hurt him.  It may mean he doesn’t learn things as quickly as the others or that he forgets some things his Mom has taught him already but none of that matters right then – what matters is he feels safe and the world isn’t so crazy in there.

Kids and adults a like on the spectrum tend to retreat or withdraw into their safe place when things become to much.  It could be a bunch of little things like being stuck inside due to weather more than you are used to, or dropping something and then spilling something else later and then a bunch of other things that have built up over a bit of time come spilling out in one big messy emotional waterfall and we just shut down.

We will often push people we care about a lot away one minute and the next we are upset that we did and want them back near us for support.  We tend to be yo-yo’s with our emotions like we are all teenage girls feeling devastated by our first heartbreak.  We feel angry, hurt, sad and frustrated – it’s just a big messy pile of jumbled emotions all running through our mind and hearts at once.  Truth be told we don’t really know what we want exactly and as someone on the outside looking in I am sure it feels like it’s just a lot of drama over nothing.

While we can be dramatic – it’s not always a struggle to cause drama we often are just overwhelmed by life, the social interactions, the always trying to keep up “appearances”, always trying to navigate a world where not much is what it seems, where people don’t always say what the mean or mean what they say.  Try processing all that on a minute by minute basis and wondering if you over thought it or under thought it.  Wishing the world would just bloody well make sense for once so you could just catch a break.

Sometimes we just need to retreat and find our calm happy place so we can proceed forward again when we are better able to cope.  Just try to understand and be there when we need someone…we will come around just give us a bit of time to work through whatever it is that is bothering us.

Navigating services feels more like a hostage negotiation

As a parent of two girls on the spectrum I often feel that trying to get them any kind of help is much more complicated than it needs to be.  Those with money can afford private services – but even that is hard to navigate.  People apply and don’t show, people show up and then do one or two shifts and never call or show up again.  You end up on so many wait lists and navigating so many things that you feel like there are more directions than there are ways to get there.

I sometimes feel like we need to be hostage negotiators and quite often we are also the hostages trying to negotiate our own release so to speak.  Kids need support – as parents we can help them but we to need to step back and be parents and not their speech therapist, their OT and PT etc.  Our lives are already busy and stressful and at some point in the day we need to step back and decompress just as much as they do.

In this household it’s even more essential that I can get that time in for me.  Between the Aspergers, Anxiety and all the medical issues I have and then Kevin’s PDD-NOS and his other health issues and the kids ASD and ADHD and two of them with Diabetes I never get to just relax.  Now I do prefer to manage their medical issues myself because I know what is needed when it is needed and how things have to be done.

I had to take it upon myself to help Kiana last year when the services we were getting were not helping her make much progress.  From September to June they tried to get her toilet trained with our help, they tried to get her to take her jacket and shoes/boots off and to be more safe outside when crossing the road etc (still working on that from time to time) and one step directions.  But we managed to get her toilet trained day/night and road trips before September, we managed to get her to cooperate for the most part when going out and she knows the routine for the mornings and she has been sleeping through the night and going to bed at decent times – all the things they could not accomplish with us – we did it without them.  But again it has it’s challenges because I am the parent.

I know I managed to get by in life all these years without therapy I managed to do what I could to get by in school but it wasn’t easy and I still struggle.  I want better than that for my kids – they don’t need to struggle so badly when there is help available to them.  I just wish the “system” that is there to help the kids, and us as parents didn’t hold us hostage.  I just need to catch a break somehow because this Aspie and Mom is just burning out real quickly.  It’s not ok to make the kids suffer and us parents more stressed than need be.  There needs to be a better way to do things for everyone involved.

We need acceptance not just awareness….

I write this because it has been bothering me that people keep focusing on raising awareness for Autism.  Now although I don’t think the latest numbers are near accurate (survey 11 states and a few counties in them and call it done doesn’t sit well with me and I not even American) I gotta say if people are really going to be sticking their heads in the sand so much they shouldn’t be speaking to the masses.  Autism rates they claim are 1-68 – do you not think that people are more than aware Autism exists I mean one would have to live under a rock to not hear about it or see it around them.  But the biggest problem is acceptance of all those on the spectrum.

I have never been a “with the grain” kind of person it’s just who I am.  If there is something I feel strongly about I will stand up for it and speak out until I am heard..  I strongly believe that all these people saying “light it up Blue for Autism awareness” or “color the world for Autism awareness” etc are seriously off their mark.  Good or bad Autism Speaks has put Autism out there, celebs have done the same, as have the numbers and the news and all of us.  We need to shift to being out there away from the screen and raising acceptance so our kids can stop being tormented, so they can grow up being accepted and respected.  It’s really time to get people’s heads out of the sand and realize that it’s just time for all of us on the spectrum to be accepted.

As an adult I see how little other adults accept my own diagnosis never mind my kiddos.  They think it is like the plague or something and really at times I get treated pretty bad, even by other parents that have kids on the spectrum (boy are they going to be in for a rude awakening when their kid grows up if we don’t get more acceptance going).

Sure people mean well when they post all the acceptance things – but for one it’s FB there is A LOT of awareness and we are all sharing these awareness things on our pages – Autism pages – most of the people that like our pages are other Autism parents and people that are touched by Autism somehow – now not all of them are but most.  What we need to be doing is talking to our neighbors, community leaders, getting out there in the community and spreading acceptance and awareness.  Sitting behind our screens is all good and fine BUT if you TRULY want to make an impact go out there find others in your community and go for it – spread the acceptance and awareness.  Hand out information at a booth at local baseball/soccer game, wear a shirt that you make at home saying Ask Me About Autism! or do anything that people will notice around you.  Your kids live in the community so why not educate people and get some acceptance – might even meet some others that are also apart of the Autism team somehow and they might be happy to join you in spreading more acceptance around.  Even go to your kids school/class and educate them on what Autism is – find some age appropriate material and share it with other kids.  It starts with you…you are the only one that can start to make the change you want to see in the world and these are the first steps.Image

 

There comes a time when you have to make those tough decisions…

In the words of one of the most influential people in history “In the end we will remember not the words of our enemies but the silence of our friends” Martin Luther King Jr.

It’s true – words hurt, A LOT but coming from enemies you kind of expect them to hurt.  But I think what hurts more is the lack of support from those you considered friends.  The fact that those that should understand the most don’t seem to.  Those things will stay imprinted in your brain for many many years if not a lifetime.

We all struggle sometimes, we can all use a helping hand sometimes so we turn to our friends, the people that we share our tough times with, things we don’t share with just anyone.  But what happens when they don’t step up to be there?  How many times can you honestly let it happen before it’s just beyond enough.

Somehow I find the most judgmental people out there are other special needs parents.  Now this is by NO MEANS a one size fits all generalization…but it’s true.  But what does that say for the community as a whole?  We strive for acceptance, awareness and we want people to join us in our cause.  But if we cannot work as a collective unit then what chance do we have of getting people to believe we really want these things?

When you are advocating on a grand scale you have to watch how you treat other parents/adults fighting with you for acceptance from others.  It’s hard I know sometimes – to step back and remind yourself that if the roles were reversed how would you react?  How would you want people to treat you?  If this was your child – would you stand for what you are about to say being said to them?  Does it make it ok if it is an adult you are saying it to instead?  Is it helpful?, is it nice?, will it hurt them?…if you answer these things and you answer them and it will hurt them and it’s not helpful – so therefore it is not nice – don’t say it.  Find a better way to phrase it so that it is helpful and no one has to get upset and friends don’t become enemies.

It’s not always so much about what you say but how you say it…but on the internet it’s ALL about what you type (say)…because the words on a screen are all open to interpretation by the person reading it you are sort of at their mercy.  If they are having a bad day, are upset or mad at something/someone – your words are likely going to be taken out of context and it’s not that anyone means any harm per se but it sure can cause a huge dived amongst people.

I know how hard it is sometimes for us to see that what we need out here is more acceptance than awareness. I think people are more than aware of Autism…but what we need is more people being able to accept it and learn a bit more about it, being ok with it and realizing it isn’t going away. So either accept it or don’t but that isn’t going to make it disappear.

Energy needs to be on accepting things like Autism, ADHD…any and all mental/physical issues/disabilities. Wheelchair or not people can suffer dearly on the inside…

We as a community fighting for our kids/ourselves and our struggles need to be more accepting of each other first and foremost, without that we mise well not even bother asking the general population to accept us/our kids. I have come to find that harshest critics can be other special needs parents…”oh my kid is worse than yours you can’t possibly understand” “oh my kid is so high functioning you would never know they are rocking it” “oh low functioning/Classic Autism (hate the term) kids have harder struggles than high functioning (Aspie) kids do”. Or the “you are an adult now you shouldn’t have these issues”. Or asking for understanding and patience when you are going through a hard time as an Aspie (for that matter anyone having a hard time) and it seems as though the judging and accusations fly. There is this funny hiccup in things, we all want acceptance, support, understanding for our kids – right – but what happens to the teens and adults? Are they not important as well? Should we not be accepting of ALL people with intellectual, physical and medical challenges? If we cannot accomplish this first – we have no hope of getting the hundreds of thousands of others on board with supporting and accepting us either. We need to judge each other and our situations less and work towards the goal we all want… acceptance.

Mighty League Mom’s – we review products!

We Review Products!

ML-Moms-Work-With-Us

The Mighty League Moms are mighty strong when it comes to finding and recommending products and services for our special needs children. We’re a global group—from the west to the east coast in the USA, Canada, England, ScotlandBelgium and Australia and our communities/followers on Facebook number over 55,000 LIKES and growing because our followers are actively engaged on our pages. And our messages are amplified through our collaborative support and cross sharing of our original content.  A dozen of us write our own blogs, several of us speak live, and are active voices on other social media platforms such as Twitter and Pinterest.

Collectively, we have children who range in age from 18 months to 3o years and our ausome ones have such diagnoses as ASD, Asperger’s Syndrome,  Dyspraxia, Epilepsy, ADD, SPD, ADHD, PDD-NOS, ODD, anxiety, food allergies, speech challenges or nonverbal, dysgraphia, Auditory Processing Disorder, Expressive Receptive Language Disorder, and diabetes.

These diagnoses do not define our children but we list them here for those companies, developers and authors interested in having our special needs families test and review their products, apps and books. We do not accept compensation for our reviews but you will need to send your items directly to the Mighty League Moms who fit your target market and agree to receive, test and do an honest review. We only recommend products or services we personally use and believe will be good for our communities.

Please email Jodi at info [at] geekclubbooks [dot] com with your review request.  Due to the number of e-mails we receive, please be patient for a reply and understand if we are unable to fulfill every request.

Mighty League Autism Mom’s

Mighty League Moms

Many Voices, One Heart

Mighty League Moms Manifesto

Our individual voices are strong, but we’re coming together collectively so our message of autism love advocacy rises! We’re the Mighty League Moms, women dedicated to changing the public’s perceptions by showing the positive side of autistic individuals. We’re a global group—from the west to the east coast in the USA, Canada, England, Scotland, Belgium and Australia–and we have many perspectives and experiences to share, but one heart when it comes to our feelings and commitment to those we love on the autism spectrum.

We have children who range in age from 18 months to 3o years and our ausome ones have such diagnoses as ASD, Asperger’s Syndrome, Dyspraxia, Epilepsy, ADD, SPD, ADHD, PDD-NOS, ODD, anxiety, food allergies, speech challenges or nonverbal, dysgraphia, Auditory Processing Disorder, Expressive Receptive Language Disorder, and diabetes.

These diagnoses do not define our children. And you cannot fit them neatly into a box–each is a wonderfully unique, complicated, and valuable human being with talents and abilities to share with the world…if the world will only let them.

So we’re going to speak up for autism. We’re going to speak out our love. We’re going to speak for understanding. We’re going to share our stories. Offer support. Be inspiring. Leave you with hope and optimism.  We are many voices, one heart…determined to create a new world that accepts all autistic individuals and values their contributions.

My Contribution to the project so far:

Karen McAuley, More Than Just a Diagnosis – Our Journey
Calgary, Alberta, Canada

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TO MY CHILDREN: NEGU (Never Ever Give Up): Never give up hope; never give up on yourself, your future, or your dreams. Never ever give up the good fight—and remember never be afraid to roll up your sleeves and put in that extra effort where it’s needed when it’s needed. It matters that you don’t just give up when things are tough. You got this! 

#NEGU #Autism #MightyLeagueMoms #GeekClubBooks #Facebook #MoreThanJustADiagnosis

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Autistic kids do NOT deserve to be generalized to fit societies perception

After Kalea got a dx of Autism in September from her Dr. we went about waiting to get her into the child development center which could take a year or so.  In late December I got a call and was asked if we wanted to be apart of a pilot project called RITA.  So we agreed.  So we went to our first appointment and they had her play with a toy phone that talks – her first reaction is oh it’s like when Grandma calls me – so she says “huwoh” and the lady would put her hands over the phone so Kalea couldn’t use it and Kalea would move her hands she didn’t like the lady touching her hands but the lady had a firm grip over her hands on the toy phone, then she would hold it out to Kalea then pull it back and take it away from Kalea (she is used to this Kiana does this often) so she didn’t really respond other than look confused as to why an adult was doing this to her.  Then the lady pretended to cry and so Kalea turned away and hid her face in my lap she didn’t really like that.

So that was about the just of it – other than me leaving the room to see what would happen – well Kalea has bad anxiety about me leaving – even if she is in the car with Kiana and Kevin while I run into the store quickly – she freaks out.

So based off that they said well she looked up when we pointed up – well duh she saw you put a toy up there earlier so she was probably thinking oh a toy…and they had me call her name – she was standing half an arms length from me doing nothing in particular – so she turned to me.  Well duh I mean I am right there she isn’t engrossed in anything in particular just standing there.

So we go back for our follow up – and I got ambushed and railroaded…it went down a little something like this:

As for today’s events I only went through this process because I had a dx and her Dr. was more than confident in it – although he was torn between ADHD and Autism he said likely at a later date we could give her ADHD confidently but being so young it’s not going to be anything helpful she is way to young for meds. It’s hard when you and others that are in your home and around your kiddo see one thing but someone else comes along and says something totally different.

Without any kind of Dx there just isn’t anything we can do – he proposed me travel into the CDC 5 days a week for a playgroup kind of thing at 9:30 but Kiana is home by 11:30 and I would not make it on the bus or the train and Kevin has school and it’s an hour and 20 by bus/train back to my place I would never make it. My life is just not cut and dried and that guy just kept over talking and almost forcing his opinion on me and I felt very frustrated and I just had such a hard time getting the nerve to speak up and defend my position and her Dr.s but it didn’t help. He was like “I am telling you for a fact she is NOT on the spectrum and she does NOT have ADHD nor will she ever) uh yeah ok just cram it dude and stop being such an arse. I told him I had Aspergers and about Kevin’s PDD-NOS and Cam’s dx’s – he wants to look into ALL of our dx’s because he feels we have none of that – SERIOUSLY what the fark…I brought in all my papers and everything I had on everyone and he just shrugged.

I said you can’t shove all kids on the spectrum into a box, they don’t think inside of boxes, they are bright, vibrant, smart, funny, amazing little people that you cannot say in a generalized term they do or do not do these things – if that is how this DSM rolls I want nothing to do with it, I also found out he is the husband of the nurse we see at Endocrine at the hospital – how freaking fantastic is that – seriously it’s no wonder – they are both very much like that. When I asked about Genetic testing for Kalea she is the one that told me there is not point it wont change that she has Diabetes…oy seriously I got to shake my head at people. I fight the good fight but lost…which means so will Kalea.

Kalea scored high in to many area’s but low in others so they are overturning her Dx we got in September. It used to be PDD-NOS but that’s gone now so now she is outta luck for services or supports.

Apparently they like to also generalize ALL Autistic kids saying “well kids with Autism don’t do this” So then he leaves the room and Kiana does all the things he just said kids with Autism don’t do. So they want to review Kiana’s dx now to. Holy fark she had that before the new DSM they can kiss my arse there.

She has come a long ways in a year and a half because I refused to sit back and do nothing. I worked hard with her and Kalea to, but she lost most of the words she had. Oh and she’s interested in exploring things as kids with Autism aren’t…umm w/e that’s such a generalized statement for a spectrum disorder.

So some of the things that REALLY set me off were things like “Kalea needs to be around kids that are not Autistic” his tone was more or less inflicting that that isn’t a good thing for Kalea – like there is a problem with that.  Another one “Kids with Autism don’t point or have any inclination to explore things, they are not curious like Kalea is.”  and “Kids with Autism don’t have emotional responses to things and show no interest in things like Kalea does.”  I wanted to reach across the table and SMACK him.  For a Professional he was NOT anything like it, such generalized statements and making these kids out to be mindless head cases that are doomed.

If we don’t advocate for our kids no one else will. Teachers look down on them, treat them like they are not smart, society thinks they are damaged and we need to cure them or keep them at home, people think that our kids are not capable of accomplishing great things…Dr.s treat them like mental cases and try to squeeze them into generalized compartments, getting support and services is often much like navigating an obstacle course you never signed up to navigate, we as a community need to stand up and show people these kids are NOT stupid, they are amazing, smart, funny, curious and full of wonder. Some of the worlds greatest minds have been and are Autistic – so their misconceived ideals need to be changed…we need to show them the truth. I want to work with anyone that has a project going already (photo’s/video’s etc) and get more people on board so come April we are ready to make our stand and show the world in hopes it goes viral – that these kids/teens and adults are freaking awesome.

When I found out I was an Aspie it finally clicked – that missing part of my life was found. But not before a lot of personal and emotional damage was done because I was “weird” or “stupid” because I couldn’t figure out things like other kids, I was beaten physically, I was yelled at, called dumb, I would never amount to anything…not one teacher ever believed I had potential…I didn’t give up – nor should anyone…we need to get the word out that we don’t belong in some neat tidy little box on a form – we are so much more than that…please join me…help me fight stigma and help fight for our kids and their future…after dealing with such blatant ignorance yesterday I am tired of the preconceived notions and closed minds of professionals and the general public.

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The truth about being a special needs parent

I think anyone that has a child with special needs knows the challenges…the stares, the judgements passed, the whispers behind your back, the constant battles with schools, teachers, IEP’s and the insurance companies.  We are all well versed in the whole constant up’s and down’s – lack of sleep, the sensory overloads, the picky eating, and the endless new obsessions.

What about what goes on behind the screen, the things we don’t dare talk about on FB because who knows who might see it and judge us.  Our relationships with other parents, our relationships with our other kids, and our relationships with our significant others.

Things are NOT peachy here in this household.  Each of us is on the Spectrum (yes that does make things rather interesting and not always in a good way), but Kiana is Classic Autism, Kevin is PDD-NOS and the rest of us are Aspies.  Each of us brings an interesting piece to this Autism puzzle in this household…even more so when you throw in SPD x3 and ADHD x3 and ODD x1.  It’s like one mystery after another, depending on what mood someone is in on what is going to set someone else off and depending on what someone says/does on how well things are going to go.  Meltdowns are not fun, sensory overload is rough and what is even worse – when 3 out of 5 of us are having issues and each of them keeps setting the other off again.  It isn’t pretty, it is what it is, my life.

What is it like with other parents, well I don’t get to know many people.  I moved from my hometown 2 1/2 years ago now and I don’t have much of a support network here.  It was really hard at first, and sometimes it still is but I have learned to cope as best I can.  But that is just the surface of things…

Things with Kevin and I were good until he lost his job then it was just way to much to handle.  I was just 4 months pregnant with Kiana at the time – 3 days before Valentines Day 2009.  Since then we have spent almost every day all day together – it wears a person down.  On top of that I am more organized, I get things he doesn’t (the whole spectrum thing) and I just end up doing most of the work load around here.  It is hard enough when you have your own health issues but then to have to cook, clean, organize, schedule and well take care of everyone.  I am resentful, sadly this is the situation my Mom feels like she is in, and it is in a big way just like that.  Unhappy, definitely – what can I do about it I don’t know – we have done counseling, we have done mediation, we have done lots of things.  I can only do so much and I get really burnt out.  Truth be told he sleeps on the couch, Kenzie and I are in the Master bedroom…we just can’t find common ground.  It’s hard with so much going on in one family to find that sometimes.

Having a kid with special needs is hard, we have 3 and our own issues.  It’s not fun, it’s not easy and I just want to get some space from it all but I know I can’t…I have to be here for my kids but it stinks when I have sacrificed so much of myself and it feels like I am not getting anywhere.  It often feels like I am failing at this journey, like there is just far more to this than I will ever get…meetings, paperwork, things to learn and know, people to talk to, therapy, medical appointments and all the fun stuff like that.  It can really wear me down and send me into a panic attack at times…but welcome to the life of a parent of 3 kids with big needs and being the one that gets to shoulder 90% of that on their own…no one said it was going to be easy…but no one said it was going to be so dang hard either…