Tag: New diagnosis ASD

World Autism Awareness Day- Acceptance begins with understanding

Posted on by RunningWAutism

 

Sydney LIUB  It still happens…5 years since diagnosis and we can still    catch people off guard when we say the word “Autism”.

It’s funny watching someone’s reaction. We get anywhere from an “oh!” surprise/a empathetic “sorry”/ or a completely uncomfortable “I’m not sure what to say so I am going to look at my feet” look.

I get it. I remember the beginning when I had a hard time even saying the word. I didn’t understand it. I tried to. I researched the crap out of it, read blogs, cried at Youtube, felt despair, desperation, frustration and a total sense of loss of control in our life. I shared little with friends and cried a lot with my husband.

We were contemplating and (NOW) laughing about this the other day. How deep and high the roller coaster is of emotions you experience coming to terms with words like Special Needs, Autism and the number of ignorant commentaries that exist throughout your normal day. We realized we had traversed through our own version of the 5 stages of grief. The first 4- Isolation, Anger, Bargaining, Depression simply put…just sucked in terms of understanding Autism.

The last stage, the one I have ached for for these past 5 years, the one that helps me feel like I can finally breathe again, the one that has me realizing that our relationship has survived, the one that has taught us to relax, think of things in a different perspective, laugh more…

Buddha LIUB    ACCEPTANCE.

That word…means so much in our world.

For us it means calmer tides in managing a life with Autism. It means thinking of where we are as a family not what T might go through in his lifetime.

It means not getting stressed out, horrifically embarrassed or having your eyes burning with tears when publicly someone reacts or says something well…just ignorant.

It means letting go of those inside thoughts hearing other parents talk about a challenging issue with their kids. All the while you are thinking “Ok, but you know your kid is getting invited to go to birthday parties, playing sports, will go on dates, move out of the house, and live comfortably on their own.. and we don’t have a clue if any of that is in our future.”

It means a school system that admits their faults and instead starts striving towards legitimately supporting children with Autism. This won’t be accomplished by putting them in a separate special needs room. This will be accomplished by accepting that the school dynamic has changed, that moving forward there is likely going to be 2-3 children with Autism in each classroom and incorporating education for children on how to view their Autistic peers as different, not less.

As the national average has just shown yet another jump in Autism diagnosis to 1 in 68 recently (30% increase from 2 years ago), ACCEPTANCE is something we need to start focusing on in society as a whole. Whether through a friend, a relative, a neighbour or a classmate the odds are too great for Autism not to be somewhere in your world. With acceptance, first comes the need to understand.

As we celebrate World Autism Awareness Day, take a moment to try to learn what Autism is about. The funny thing…most of us Autism parents are beyond thrilled to actually openly explain the parts we can.

TRY to look at it differently. TAKE TIME to understand.

Just ASK.

Its as easy as a Lightbulb but as profound to change as any
Its as easy as a Lightbulb but as profound a change as any

TODAY is about Lighting it Up Blue around the world for Autism awareness.

Support the momentum that globally we have seen take shape over the last couple of years by taking the time to understand and teach your children about ACCEPTANCE.

Autism Speaks has some great examples of Lighting it up Blue. Head to lightitupblue.org to register how you are taking action for Autism Awareness. Super proud of Home Depot and Philips who have teamed up to provide a #LIUB blue floodlight or simply stop by and grab a blue lightbulb and put it up in or outside your house today to show your support for Autism Awareness.

Together we can make change.

 

 

 

 

Autism has changed HOW we are..

Posted on by laughloveandlife

I like looking at a glass half full. I believe everything happens for a reason. I always try to stay positive within a situation.

Wish is partly why I haven’t written in a while. I didn’t want to be a disability parent who just mopes around all over the internet.

6 words.

“There’s Something Wrong with That Kid”.

Those words took down a 250 lb linebacker of a dad and a (we really don’t need to talk about my weight) pretty strong character of a mom.

It was at a hockey practice with our team and the other team we played earlier in the day. They didn’t know T had Autism. My husband was on the ice to work with T and other kids from our team to help them. T was tired and started meandering aimlessly through the practice, having a hard time staying on task and completing the necessary drills. They didn’t realize my husband was T’s dad and after watching a particularly challenging exercise,  one coach made that comment to the other.

Chris, my dear husband, protector of our family, hit a complete crossroads at that point. He was proud of himself later for not slugging the guy right there on the ice and totally disappointed that he didn’t get a chance to punch him in the face. Amazing isn’t it how one phrase can stir up such intense emotion?

Original source: Arham1234 on Fanpop.com
Original source: Arham1234 on Fanpop.com

You see, it’s starting to show that T is different. Up until this point, we kind of flew under the radar. His outbursts of movie content, overly sensitivity when someone yelled (he actually told a hockey mom once that she needed to stop yelling at her son and that made him “VERY angry” – clenched fists and all), kissing and hugging (inappropriately) friends, parent of friends, teachers, daycare providers and his speech pathologist kind of came off as endearing and young. So much so that we were often asked if we were “sure” that T had a diagnosis of ASD.

In some ways, he is doing a 1,000 X better in terms of social. The new WiiU he got for Christmas has allowed him to engage with his friends in something that he loves to do and is proficient at so that he can provide advice to his friends and find a way for them to play together and on the same team. But he is also starting to demonstrate those tell-tale signs of Autism- he doesn’t connect with how loud he is, can’t quite gain control of physical responses and often “over does it” when excited or stimulated, he gets very upset if you get angry with anything (most recently it was a friend’s dog who he adores that was getting into trouble for eating off the table), and his friends are noticing his repetition, nonsensical statements and lack of interest in common games typical of a 6-year-old.

On the bright side, he doesn’t lie, has a laugh that is so pure and honest, you want to bottle it up and save it, and his empathy is such that he spent an entire period of hockey making sure that everyone was ok who had fallen down.

This is yet another phase we are learning about on this journey and what we have recently discovered is that it doesn’t define WHO we are but often does define HOW we are.

And part of HOW we are going to be is to always try to stay positive, and overlook the times when people are ignorant in what they say but at the same time are telling the truth. There IS something different about him.

Something awesome.

Thinking positive- ASD

 

Get down? or Get back on track?: Depression nearly got me

Posted on by laughloveandlife

Yesterday felt like the lowest of the low kind of days. I felt like it simply took EVERYTHING inside of me just to get out of bed..to keep going…to keep working towards getting T help in school…

All parts of me felt on the verge of hiding under the covers and simply going back to sleep, avoiding the challenges we have been facing for a simpler, quieter, easier kind of day.

Was I depressed? Absolutely. Is this depression…I don’t think so. But easily see how if I were to give in to that desire to stop ,it could easily be there in a heartbeat.

As a family, we’re exhausted…we’ve been working with the school board in trying to find a solution to support our son in school. It’s been incredibly draining and the amount of meetings/emails/conversations we have had about it has us living in survival mode to just get through each day. We are continuing to advocate for T and won’t stop… but its taking every piece of energy we have.

Add that to the fact that I have been injured over the summer, have hardly exercised and ballooned in weight because of it. I just hit a wall. I started seriously questioning whether I needed to consider going to see someone professionally by mid afternoon??

But then we had an Autism Meetup last night. A group we started to support Parents in the city of Toronto who want to look at different ways to manage through Autism, look to each other for support, get advice on different solutions and talk through the victories and challenges we have.

It helped. But this morning helped even more.

I decided I can’t let this get to me. I know we have to keep fighting and I need to keep energy high to take care of our life. I need to be there to support our kids as they begin the school year, my husband, who is writing the most well-articulated letters to anyone and everyone willing (or not willing) to listen and my business, that I need to keep going in order to maintain the flexible schedule we need to access therapies/resources for T throughout the day.

I decided to try to go for a run…and then someone woke up early and agreed to come for a run with me. T…agreeing to come along if he could run in his pajamas.

Sometimes we need a little reminder what we’re fighting for

We raced…full force…fast…as hard as we could…and I remembered why I started running in the first place.

Running helped me work through the diagnosis of ASD, helped me gear up for the fight and I realized that I REALLY need that element in my life to stay sane.

I might not be as fast as I was awhile back, but I’m back.

A much needed TIME OUT to keep in the game

Posted on by laughloveandlife

Let’s be honest. June knocked the wind out of my sails.

My resolve got knocked down, my heart ached, my dukes down in the fight. This is how it started…

Part 1: An autism conference where I realized how still very far away they are from really understanding Autism, how to treat it, and really concrete ideas on managing through it. But I also felt like my heart had been given hope and crushed at the same time as we learned more about  just how much of a fight this will be in T’s growing up..Abundantly clear thanks to an endearing dialogue between The Thomas’ a mother, Sandy and her 22-year-old son, Dylan as they candidly talked about their perspectives on what it was like growing up with Autism. Bottom line..”it will break your heart, it won’t be easy, but you’ll get through…”

Part 2: A series of “showcased” events (School dance, year-end shows, school field trip) in which it became fairly obvious that people I assumed “got it” were not exactly sure how to treat or address Autism as a normal part of daily life. One instance was the school trip in which I got the impression they thought T would  “dart” …we were on a farm..I volunteered that day but instead of including the two ASD kids in with the regular group and asking us to be active observers, we were kept separate along with the other Autistic boy in class and his mother, keeping the most important challenge of Autism, socialization the missing link on that adventure. Another moment was when he was set to the side at the dance,  that “joining in” to the rest of his class would get him too excited.  The last at a year-end recital for dance (we do Tap with him cause he loves the impact), I couldn’t help but cry because he was actually doing the routine (slower-about a 5 second delay) but he was doing it, and enjoying it and we were so friggin proud! and then…he just checked out…went off to his own planet halfway into the second routine and I started crying for a different reason…I was crying because I just wanted him to come back.. to be part of the moment…to be proud of what he accomplished…to be there.

Part 3: Where we are told that the Toronto District School Board does not have enough funding to provide an SNA (Special Needs Assistant) for T (and many others) next year and that we now need to fight our way up the ladder, become the squeaky wheel, do whatever is necessary to try to facilitate support for our son in the school system.

Part 4: Friends started asking how it was going, how T was doing, how our family was doing. I struggle often talking about Autism (except ironically online) because I don’t want it to consume our life. I don’t want it to be the only thing people think of when they look at T and yet, I want it to be a comfortable piece of conversation that is shared between our friends and family. I started to say something but couldn’t get the words out without that evil lump in my throat showing up. I’m not exactly sure why I started sobbing except that my energy felt it had hit an exhaustion point and my  heart-felt that it was physically aching. I said I was worried. That I felt like I wasn’t sure we were doing enough, that I hated thinking about how hard he might have in trying to connect with people growing up, worry about him, our daughter and making sure she is fairly and evenly cared for..my husband that he’s doing ok (as much as we talk, he still has taken on the role of guardian, papa bear to us all). We have amazing friends..but I didn’t realize how amazing until we started talking and they just let me talk…and gently asked questions and reassured me that we were doing everything we could to help T and support his success.

Strength in your relationship will give you the energy you need

And this is how the month ended…My parents came to town and let us get up to the cottage on our own. I sincerely think this saved my bacon. After reading an article in the early days of ASD that quoted parents of special needs were 80% more likely to divorce, I have been a big believer that it is essential to keep your relationship strong in helping manage through Autism. This trip time gave us the chance to regroup, to reconnect, to talk, to laugh and to remember why it was we got married in the first place.

We came home stronger, moving on and ready for July..refreshed and optimistic. We will all have those roller coaster times but this part of the ride I want to stay on for a long time.

How Women In Biz helped me open up about Autism

Posted on by laughloveandlife

I had the pleasure of attending the Women In Biz Network Conference in Toronto last week, reuniting with a number of “old” friends and meeting new ones. #WIBN has a very soft spot in my heart as it was through Women In Biz that I truly figured out Twitter and via their networking events, have met dear wonderful people who I truly count as amazing friends now.

It helped me realize how very much I am not alone in the world of solo/mom/entrepreneurship and that many of the challenges I face are very similar to what they are going through. What I love about the Women In Biz Network (perhaps because so many of us are moms) is that unlike posturing at other conferences, there is a group of highly motivated, intelligent women, willing to talk about those key challenges and brainstorm together how to help one another. What I have also found was a group of kindred spirits in moms (who are business owners/bloggers) who have children with special needs. They have been a tremendous source of encouragement, comfort, laughter and that much-needed nod of understanding when you are detailing some of the latest challenges you’ve had with the school board. Their experiences mirror my own and help me get through the moments I struggle with.

It was during one of those candid conversations, as we laughed about some of the judgemental looks we’ve gotten at the grocery store, that I realized how much we have changed habits/behaviours within our life to accommodate Autism into it. None of it is really a big deal but when you start adding it up, you realize how many changes we have made to help keep things on an even keel and keep our family strong.

A few changes..

-We haven’t eaten pasta in god knows how long. We used to get upset with T when he would gag out the spaghetti he was eating (thinking he was being overdramatic) until we discovered that texture can be a major issue for Autistic kids.

-My mother loves buying really awesome outfits for the kids but even she is starting to recognize that T just won’t wear jeans and depending on the day, really hates collared shirts (sometimes he will so there is always hope!) His favorite attire, pajamas (you can find him in them at any given time of the day) and he also can be found wearing a long sleeve shirt in the middle of a heat wave. Again as we looked further into this, jeans can feel like sandpaper to a kid with sensitivities and sometimes the long sleeve shirt is a response to his heightened reaction to stimuli. The funny thing is is how often before we better understood this, that those were a root of frustration/anger/impatient arguments in trying to get T to do what he was told.

-T goes through obsessions. First it was Thomas, then Lightning McQueen (Cars), then onto Super Mario. We are used to it. The kids at school patiently say “Yes, we know T…Super Mario and Luigi say ka-pow…as they roll their eyes cause they have heard it every day X10 for the last 2 months”, other people are not, and we see them annoyed/confused/amused by his repetitive conversations or simply stuff like “Welcome to the Thomas and Friends DVD Experience. Please press play to start the movie” We roll with the obsessions and often use it as a reward for good behaviour. Trying to fight it has proven to just not work for us.

-We have become quieter in our house. We’ve realized that yelling or loud voices is one of the worst things for him. We use a lot of non-verbal charades to help slow his brain down and get him to focus on looking at us to accomplish tasks. We also recognize that after a while when there are a lot of kids over playing that he will disappear to go play on the computer. Yes, it’s rude but it’s how he copes and we are totally ok with that.

-We work on patience (my husband and I) daily. We try more now to figure things out. See what’s not working..decide whether its T being a 6 year old boy, Autistic or both. We still have some really sad days (usually after an incident at the playground or after talking to the school board) but we know that if we don’t work together on all of this (as many reports show) we won’t make it. Bottom line.

This journey has taken us sharp left…and it is definitely an interesting adventure. Obsessions will change, behaviours will differ, life is ever-changing and we are learning as we go how to work with it. That’s Autism. A different puzzle (or piece to the puzzle) all the time.

Original source: http://www.theshirtdudes.com/monopoly-change.html

We LIT IT UP……Blue for Autism Awareness

Posted on by laughloveandlife

We LIT IT UP BLUE

Autism Support
Light it up Blue on April 2, 2012

As I came home last night and approached our house, the shining blue spotlights clearly made a statement. I love that we chose to do this as a way of showing our support for World Autism Awareness Day. It demonstrated part of our commitment in raising awareness for Autism but in my mind, also made me keenly aware of how different we are from our neighbours. As they went on with their nightly activities, I came home…poured a drink…cuddled into my husband and had a good cry.

I was so overwhelmed by yesterday.

Throughout the day, I felt incredibly proud of how people in the world were coming together on one singular day to raise as much awareness as possible. It seemed every store I had stopped into recently- Toys R Us, Home Depot- there was a message about raising awareness. The Autism Speaks website had an incredible amount of shots of structures around the world Lighting It Up Blue in support. Amazing.

I found myself reading a ton of blogs, following a number of streams on Twitter, posted on Facebook, and received messages of support via email, direct message and posts on my walls from friends who generously reached out to make their statement about Autism.

My heart hurt with how many people wrote honestly and with raw truth on what it feels to be a parent with a child with special needs. The one that hit the nail on the head was 7 Things You Don’t Know About a Special Needs Parent. I appreciated so much what Maria Lin wrote in terms of the feelings you have as a parent in this situation.

When I was online after first hearing the diagnosis, I wish I had seen this. Instead I went through months of guilty feelings trying to get past that life will be different now but not really knowing how to move on. (Thus the running)

I feel like the cog in the awareness wheel is finally starting to move a little bit. That people are more and more aware of Autism (and an increasing number of kids are getting diagnosed with some form of ASD) but they still don’t really understand it. No one really does.

Now I find part of me is filled with an unruly amount of impatience. I want to do something. I want to fix something. I want to see change.

I keep thinking we need to look at things just a little bit differently..to better understand Autism and how it works, we could come up with stronger answers on how to help them manage through the key challenges they have in daily life. I used the example to my husband of one of those 3D puzzles you have in the paper. Looking at it, its just a series of spots..but if you let your eyes relax, suddenly you see an entire picture that wasn’t there a second ago.

I am trying to relax… my eyes…just a little bit more.

Autism Diagnosis – 1 year later…It gets better

Posted on by laughloveandlife

We’ve officially just passed our first year with an ASD diagnosis.

It’s sometimes hard to believe that it was only a year ago that we first got sucker-punched with the announcement that our 4 yr old son (at the time) was on the spectrum. This year became a test of everything. A test of our patience, a test on our marriage, a test on our ability to learn, to cope, to support, to stay positive, and ultimately to keep laughing.

For those of you new to a diagnosis, here is a snapshot of what might happen within the first year of discovering your child has Autism. (NB: I’m being brutally honest here in hopes to pass on a realistic viewpoint and let you know that you are not alone)

First 2-3 months: Feels like you’re in a foggy haze. I have seen people react many different ways to a diagnosis. Self-pity, frustration, anger, heartbreak. As much as I tried to be positive, there were still moments I felt like I wanted to scream. I couldn’t comprehend why us, didn’t think he was really that far off from regular kids to be defined as Autistic, embarrassed by how often when someone asked me about it I couldn’t hold it together. There will be many tears, often from frustration as you fumble through trying to figure out what you are supposed to do (especially when it comes to finding support and school). You might feel useless, overwhelmed, sad, disappointed and still completely (if not more so) madly in love with your child.

A dear friend gave us a copy of The first 100 Days by Autism Speaks. It helped. Although my husband and I are both Do’ers- I’m an event planner and he’s a project manager and we didn’t get the sit back and process mode, instead stupidly tried to project manage the Autism right out of our little guy.

100 Days of Autism Diagnosis

Source: etsy.com via Jennifer on Pinterest

 

The next 4-8 months: Once we finally got to the realization that indeed our son was Autistic, that this was going to be a lifelong venture and we needed to start adjusting the how to’s in managing his success, we (or should I say I more so than my husband) had a really difficult time informing people of T’s ASD diagnosis. It felt often that people were a bit stunned and didn’t know what to say..choosing to say something like “well, he doesn’t seem Autistic to me” (hated that)..or gave us that dreaded pity look (hated that more). Then there are those friends who say something brilliant and just help you get through. Best examples of peeps we love and their originality that helped so much..

J- Simply said “Oh..so he’ll be an engineer” That matter of fact..like ASD would help guide his career path to a place where other socially awkward folks might hang out..that there was a pre-existing destination that would be completely accepting of the way he functions

G- Who sent a lovely email with “I don’t know what to say” (love her honesty) and that she was there..on call…standing by if we needed her.

T- Who let me just bawl and agreed it sucked and let me rant to her more than once and asked me how I felt…that rarely happened and I would rarely talk to anyone how I was feeling but T and I are that kind of veritable friend soul mate..who can call you out, ask you tough questions and you love them for it

W-Who is one of the most generous hearts I know and also has had a ton of experience in Autism given that she has family who are as well. She was the greatest listener and advice giver ever. Having a ton of wonderful matter of fact conversations that helped me better understand what Autism is all about.

School

In this time period, we also felt the massive and crushing experience of “working” with the school system to get T some help. It blows my mind how often we heard “the squeaky wheel gets the oil”…and they’re right. Chris and I are both very much sit in the camp of you get more bees with honey but this is one example I can truly say, YOU GOTTA FIGHT! FOR YOUR RIGHT…to have your children supported in school. Many parents who went before me with the an ASD diagnosis, kept telling me to advocate for my son. I truly didn’t know what that meant until dealing with his education. It felt like a battle from the word go.. and we have to say we are incredibly fortunate to have a principal we feel supports us and lucked out with an EA who T and another boy share. The key issue..budget. There is 4X as many Autism diagnosis than in 2002 in our province and yet they have not changed the budget significantly to manage how many kids are needing help.This is something I plan to go on a crusade about once we get our lives in order.

Help

Another key change we did was coordinate help. We went to the Triple P parenting class offered by the Geneva Centre for Autism, which I highly recommend for a number of reasons. 1) You get to talk to other parents who are having similar struggles at home 2) The videos might be a bit hokey but they give you great foundations to work with not only your special needs children but parenting in general 3) You start developing a series of strategies for managing through the day to day to keep your spirits high and your energy focused on the positive. We also worked with an Occupational Therapist to look at ways to help him manage (we discovered he is a deep sensory kid and that a really big squeeze hug will help often when he gets overwhelmed). It also explained a lot why he doesn’t like certain textures..(right now jeans are on the outs) as the OT explained for him, its more like sandpaper than comfort..and why he gets really excitable in loud scenarios (his hearing is super sensitive as well) One of our worst moments was in the midst of a fire alarm. A situation I will never forget. The most valuable we are finding is working with a Speech Pathologist. She has made incredible strides with T in making eye contact when he is talking, taking time to think through what he is saying and learning how to be quiet and not talk..something I didn’t realize how important until we started using this as a technique at home. When he is really excited, we put our finger to our lips (for quiet), gesture for him to focus on what we are pointing at and wait quietly while he accomplishes the task. I tell you, getting dressed went from hellish to happy simply by using that strategy.

8-12 months: I think it wasn’t until then that I was actually able to get out the words Special Needs without cringing at the response I was about to get from people. We still get the pity look but I now realize that its simply because they don’t understand. Who I did feel totally got it was all the teachers in my life. One, an old friend from high school, Jamie M simply asked was kind of savant quality had and talked about the 5 kids he has in his class (this makes total sense as he is an absolute ham and would completely “GET” an Autistic sense of humour). The other, my cousin, shared a beautiful poem with us about truly understanding Autism in the form of the Night Before Christmas. It made me cry but also  made me realize how she and many others are part of that quiet strength we have in our corner. Friends and family are what you need to help you get through sometimes. Talking is good.

Marriage

Speaking of talking, the one thing I can’t stress enough is to keep the dialogue open with your spouse. As I was initially researching Autism, I came across a stat that 80% of marriages with special needs end in divorce. It freaked the crap out of me. So a key thing we concentrated on was keeping our relationship strong to be able to stay strong as a family. We set up and maintained date nights, met at the kitchen table for wine, tears and conversation, banded together to fight the school system. We are (what I would say) one of the strongest “teams” around and even then we faltered on occasion- getting frustrated at each other because of being frustrated with the system or bottling up the heartache we had that life wasn’t going to be ordinary in certain ways. That T might or might not do well in team sports, social situations, school..but talking about it and sharing our struggles made sure that neither of us felt alone in this journey. Check out Our Son Destined for a Team for our perspective on sports.

One Year Later

Life is moving forward and we are seeing some great progress in T’s development.I was starting to feel like he was really behind in the way he interacted with kids but he is starting to integrate a ton better and we are working on social situations. In speaking with his support team at daycare/school, turns out he has lots of friends and in that beautiful way that kids are, when he starts getting upset, they somehow have figured out strategies to keep him relaxed throughout the day. (They gave us a great example of T starting to get agitated and one little girl coming over and handing him a train to hold onto…seriously, I turned into a mushy mess in the middle of the meeting).

To anyone out there who might have recently received an ASD diagnosis, it will get better. You will learn to adjust to the changes in your life and the grieving period will start to subside. You might be surprised by how much of a protector, fighter, lover, or comedian you will become. It will likely change you somehow. If it does, be sure to figure out what you need to get through. For me, its been exercise and laughter and an invaluable support system behind us.

Make yourself strong. Mentally, Physically, Spiritually…so that you can help your kids have the best adventure of their life.

Source: etsy.com via Christine on Pinterest

Putting on a brave face

Posted on by laughloveandlife

I’ve always been a glass half full kind of girl.

My life’s focus has for the most part been on the optimistic side of things, the cheerleader, the positive vibe, bringing everyone up when they’re down, making people laugh.

In an effort to be straight up through these entries, I’m not doing so good at that these days.

Since we began this journey, I have been frustrated, deflated, heartbroken, depressed, to the core sad, and madly, deeply in love with my son..and felt like I couldn’t really say that to anyone aside from my husband. Instead I would run to vent through the frustrations. Use physical energy to help dull the emotional energy that keeps welling up inside me.

When we tell people, we are experiencing what I would consider one of three reactions.

1) THE That’s really sad, tilt your head “oohhh’s”, pity look (which I hate)

2) THE No big deal, you guys are great parents and he’s lucky to have you, he’s not any different than he was yesterday, sweep it under the carpet, NEXT…

3) THE No clue what to say stumble..NEXT…

I want to talk about it cause I am aware that talking about it helps clear the air, get things of your chest, make you feel better. But I don’t want to burden anyone with talking about Autism and what we are experiencing because it feels uncomfortable. I’m embarrassed for having these feelings…I feel weak because every time I talk about it, I get a huge frog in my throat and usually start to tear up.

I wanted to tackle this head on. Become the model parent who has it all figured out and has truly taken on the form of “ADVOCATE” for my son.

A bit of a lofty goal as anyone going through this will attest. As much information as you can absorb, as many resources you can tap into as many blogs as you can read…there are some hard, heart-wrenching emotions you need to go through before you get used to something like this. Its been 3 months and we are just starting to get there. Where we are passing through the grieving period and getting down to business, trying to figure out what our next steps need to be for T. For anyone who is reading this with a new diagnosis, cut yourself some slack….you will need time to process this before it starts becoming something you can accept. But from what I read, and hear…nobody is alone in feeling this way.

If you haven’t come across it, a good starting resource is the Autism Speaks 100 Day tool kit http://www.autismspeaks.ca/en/after-diagnosis

Its American but at least provides solid information on what you are dealing with in the 1st 100 days of diagnosis.