Getting More Services

Yesterday was a tough day for me. I was dealing with so many effects of Cooper’s disability. I spent over an hour talking to the county. I have decided to move forward with trying to get more services for Cooper. And this means confessing my whole life story to a random social worker that doesn’t know me or Cooper or sometimes anything about Autism.

Telling our story is a lot. It makes me feel trapped. Sad. Embarrassed. Like a whiner. Uncomfortable. I feel like I am begging at times. And that I appear weak. And then I feel loud and pushy. I feel aggressive. And after a phone call like that I want to either nap or bury my head in a bottle of wine. Both are never an option though.

He has developed quite a few new behaviors in the past couple of weeks that are beginning to freak me out a bit. He has started putting little objects into his mouth. We are talking game pieces, lego pieces, screws, batteries, string, tinsel or any other object that can be found on the carpet. We will walk into a room…he will see an object on the carpet…one that the untrained eye would never see…and instantly it’s in his mouth.

I am not sure how to baby proof for a 6 year old. That’s a lot to take in.

He has also started climbing cupboards and tables. On numerous occasions I will walk into a room and he is standing on top of a counter. Or even on top of a fridge. That is scary. It gives me a heart attack.

But I can’t spook him. I need to stay calm. Be relaxed. I chuckle when other people are over and Cooper does some bizarre dangerous behavior and they panic and I stay completely calm. I have too. If I spook him he will run. He will jump.

Other behaviors include an obsession with outlets, knocking over lamps, breaking mirrors, scissors, knives. Blah, blah, blah.

Here is what I have learned. The county starts caring when safety and health are a concern. And only then.

Well, I am a strong mom. I have a ‘I can do this’ attitude. I don’t need help. So in a sense I feel like I am giving up who I am when I ask for help. It’s gross. But I am waving the white flag. Sigh.

I can tell that getting more services is going to be a fight. Once that dawns on me I instantly feel exhausted.

As a parent I thought that once we got the diagnosis the rest would be easy. That is an epic misconception. A diagnosis gets you in the front door. After a 7 month wait of course. And a blood sample. And a 4 page essay on my vaginal birth.

So, more to come on that.

Also, I started a Facebook page for this blog! I have found so many great resources throughout this journey and I want to assemble them in one place and my personal facebook page is not the right spot. Click HERE to follow!

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To The Parent of a Newly Diagnosed Child:

Hiya there friend,

Your child has just been diagnosed with Autism. I heard about you from a friend of a friend. Or maybe you found me on Instagram. Or you emailed me at 1 am as you were frantically googling autism in the middle of the night.

I see you. I understand what you are feeling. I was you. I am you. You are going to look to me for hope. You are going to search through hundreds of blogs until you find the one that sounds like your child. Maybe that’s Cooper. And maybe it’s not.

I know you are in shock. Even if you knew deep down that something was different about your child you are still in shock. Hell, Cooper was and is completely nonverbal and there are days where I still think he will snap out of it.

When I walked out of Cooper’s diagnosis appointment I felt every single emotion possible. We waited for 7 months for that appointment. The day came. The appointment happened. We got the diagnosis. We left. I cried. Everything was immediately different yet exactly the same. I was not the same woman that walked through the front door of Fraser.

I was an Autism parent. A special needs parent. I had a label. I was immediately different from other parents. I felt like it was tattooed on my forehead. I immediately questioned everything I did during my pregnancy. I hated my body for failing this child.

I felt every single emotion possible. As I am sure you do too. But they are flying at you so fast you can’t actually make out one from another. It’s a flood.

Relief. Sadness. Confusion. Isolation. Fear. Embarrassment. Anger. Desperation. Grief.

I wanted to take my beautiful baby and run away to a cabin in the woods. I think I actually tried to figure out a way where we could move to a remote part of the state. I wanted to hide. If I hid him this would be fine.

I could outrun Autism. I knew I could. No one had to know.

This is called fight or flight.And it’s the grossest feeling ever. It’s not logical.

I get it friend. You are an autism parent now too. A special needs parent. You are in a group. A group that you don’t want to be part of. And you feel more alone than ever.

I know how you feel. All these emotions are flying at you and you don’t know how to manage any of it. And to make it worse you still have this super challenging child. Then add in everything you’ve ever heard about autism from Google and your mother’s sisters friends daughter. There are buzz words like Medical Assistance, Social Workers, Case Management, Financial Aide Workers, and IEP. The list goes on.

The advice is pouring in. Random friends of friends are emailing you. Your Aunt is tagging you in an autism post on Facebook. GO GLUTEN FREE. CUT OUT DAIRY. VACCINATIONS, VACCINATIONS, VACCINATIONS, PROBIOTICS, ETC., ETC.

But the oddest feeling of all is how the world keeps going on around you. You are different. But yet your child is not. They are the same.

You went to the appointment. You got the diagnosis. You left the appointment. You told Grandma and Grandpa. You tried to answer questions. You cried. You hugged your spouse. You talked about the unknown future. You drove home. You fed your child dinner. You gave your kiddo a bath. You put him or her to bed.You hopped on Amazon and ordered 5 books on autism. You joined a special needs parenting group on Facebook. You googled ‘Autism and Hope’. You got into bed. You cried some more. You thought about the day.

You spend hours wondering if the psychologist was wrong. You immediately Google, ‘Autism Misdiagnosis’ and find a wonderful blog post about a child cured from Autism. And you think, ‘this is going to be fine. This will be fine.’

Then your child will completely and utterly throw you for a loop. Or maybe you will see them next to a peer and the blatant differences will scream at you.

This is real. This is happening. And you can’t outrun it.

You will look at your baby and see the exact same child you did pre-diagnosis. Nothing has changed.

All of a sudden you hate the term Autism. You think if you hear it again you might scream.

Can you say it out loud yet? Can you say, ‘my child is autistic.’

It took me a year to be able to say my son has autism to a group of people. Even to this day it still sounds odd when it comes out of my mouth.

This will sound crazy to you but a day will come when you will tell someone that your child has autism and it will be a good thing. That sounds ludicrous right now. Just believe me. The day will come and you will say it and you will see understanding in a strangers eyes. And you will be thankful that you can explain to people why your child is hitting them self in the head. Or rolling on the ground screaming.

In a super weird completely messed up way that word is now your ally. But you aren’t there yet. So don’t think about that please.

If you are anything like me your first thoughts post diagnosis are ‘what now? You need a plan. A focus.

The night after his diagnosis I needed to research. I needed to stay busy. I needed to fix my son.

I want to tell you that I did it all wrong. I put way too much pressure on myself and my marriage and most of all Cooper.Well, maybe not all wrong. But I was so panicked. I didn’t have the best support system and I isolated myself. Cooper’s dad would say I became a martyr.

So, here is my advice to you as a newly diagnosed parent:

  1. Grieve. Feel every single feeling.
    Be sad. Don’t force yourself to be happy. Don’t lie to yourself either.  You pictured your child in one way and now you know that may never happen. Do not let anyone tell you that you shouldn’t be sad. Or that it could be worse. Do not listen to any stories about people that have it worse. Do not feel guilty for being sad. If I had a quarter for every time I felt sad and heard a story about a mother that lost her baby or childhood cancer I would be a zillionaire. People do this because they don’t know what to say when talking to a grieving person. Feel every feeling friend. Just sit in it for a little bit.
  2. Take time to process.
    Nothing is going to change right away. I thought that our lives would change immediately once we knew if our son was autistic. I was wrong. It took months for us to see any effects of the diagnosis.  There was no medication. No magic pill. Honestly, there was no hope given. There was a label. A diagnosis. A heavy title. And I felt every ounce of its weight. By the time we hit the car I was already on Google trying to find out how to fix this. As a result I did too much too soon and it left me feeling extra anxious. I was making phone calls and raising expectations. I wanted to do as much as possible. How does that old saying go…I was throwing stuff at the wall to see what would stick. Don’t do that. Just process.
  3. Wait to tell people until you are truly ready.
    I told way too many people about Cooper’s autism appointment. I immediately regretted that because I didn’t know what to tell them after. I was scared. And was too sad. I also had no answers. I didn’t know how to answer people’s questions. Still to this day people ask me if Cooper is going to talk. Or they ask what his future looks like. HELL IF I KNOW. I wasn’t prepared for people’s questions and they made me feel so much worse. I was too sad to help them understand Autism.
  4. Don’t expect anything to change right away.
    I really believed in my heart that our lives would begin to change the second we got the diagnosis. If the universe had any idea what it did to me to physically go the appointment they would’ve saved me right away. But life doesn’t work like that. Nothing changed. We walked in there with Cooper. We walked out with Cooper. We told close friends and family the news. That was it. We knew nothing more, nothing less.
  5. Find other Autism parents.
    Finding other parents changed my life. Blogs helped. Facebook groups helped. I joined an Autism support group. Reach out.
  6. Get ready for a fight.
    I know this sounds funny. But it’s true. You are now the sole care advocate for a vulnerable child that most likely can’t communicate. You are going to fight battles that you didn’t even know were out there. You can do this.

Grief is not linear my friends. You are going to have highs and lows. Cooper will be 6 on Tuesday. The severe parts of his Autism are getting more evident. His sheer size alone is a lot. I still grieve. Just when I think we are settling into a routine or have a win a new behavior will develop. Kicking. Pushing. Putting small objects in his mouth. Tearing apart beds. Knocking over lamps. Climbing on cupboards. The list goes on. We add in therapies. We change strategies. I have one meltdown to every five of Coopers.

And you know what, that’s OK.

I want to tell you that you have the strength to do this. You will become stronger than you ever thought possible. Your skin will get so unbelievably thick and you will become the strongest advocate for a vulnerable child. That’s pretty amazing if you ask me.

You don’t have to fight Autism. Or carry the torch against it. But you do have to fight for the best services possible for this little person that is completely and solely dependent on you. And good god friend you will feel isolated and alone because of this child.

I know it’s not the life you planned for. I won’t blow smoke up your butt and say that this one is better than the one you pictured. I won’t lie to you ever.

But what I do know is that you can do this. You are not alone.

 

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An Autism Christmas

Christmas is supposed to be a joyful time. Pre-autism it was my favorite. I love the decorations and the food and the family. The snow. The coziness. The children opening presents.  The list goes on. Christmas was my favorite.

It’s different now. Just like everything post autism. There are too many expectations. I used to get sick to my stomach just thinking about it approaching. Except now I have a wild and rambunctious 3 year old who LOVES Christmas. He talks about Santa non-stop and how he is going to stay up all night long and meet him. And how he wants a crane. And 74 other things.

We are writing letters to Santa and watching Christmas movies. He even told me that he loves our Christmas tree more than anything in the world. My heart is full with his joy.

I finally have the child I wanted celebrating Christmas in a normal way. It should be fine, right? I get to visit Santa and bake cookies. I have what I always wanted. Except, everything has an autism veil over it. As I looked back at Christmas pictures to share in this post I realized they were all of Sawyer. None of Cooper. He wouldn’t take a picture with Santa. Or with people. Nor would he celebrate.

Having Sawyer doesn’t make the sadness go away. I need to stop thinking that it will.

Cooper was born December 6th. I still remember his first Christmas. We lived in northern Minnesota and our family lived 3 hours away. We were expected to go visit for Christmas.  I did not want to go. Cooper wouldn’t nurse. He wouldn’t sleep. It was terrible. I’m not going to lie. It was so unbelievably stressful.181980_199741820036286_2238770_n

But, Jamie convinced me to go. I am still angry about it. The drive was awful. Cooper didn’t sleep. I was uncomfortable and nervous and fat. The list goes on. I spent the whole time nursing and pumping in a bedroom.

But we got through it. Here is a picture of how much he loved it.

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A lot of people ask me if I saw a change in Cooper at some point. Did his autism appear over night? Was it gradual?

I have numerous thoughts on that. So many I could probably write a book.🙂 Or a blog.

Cooper was born autistic. I have no doubt. He was a very stressed out baby. He didn’t sleep. Like ever. As a newborn he slept 8 out of 24 hours. Max. It was insane.

As a baby he LOVED to eat. He couldn’t nurse though…and looking back that had to do with his Apraxia. So I pumped for a year. Cooper weighed 25 lbs at 6 months. He was a moose.

At his first Thanksgiving he was almost a year old. He ate everything we put on his high chair tray.

That was his last real meal. He stopped eating 98% of foods that week. To this day his diet is tiny. Another huge autism leap for him was his second Easter. He was a little over a year. He stopped sleeping longer than an hour at a time. Throughout the night he would wake up 10-12 times screaming.

It’s funny how I associate those things with holidays…Thanksgiving, Christmas, Easter. Talk about post-traumatic stress disorder!

The holidays tanked after that. People, even family, (its better now) find Cooper to be stressful. Hell so do I. It’s the truth. His anxiety and intensity are at the max over the holidays. New places. Lots of people. Expectations. It’s a lot for adults. It’s even more for autistic kids.

He doesn’t sit down for a meal. He doesn’t eat with the family. He refuses to put his Kindle down. He won’t open presents. That’s hard on grandparents and family. I see it. I started to try and avoid it. I tried to keep him home. I failed. But I would try.

Then Sawyer was born. We started doing things with him. We’d bring Cooper but he couldn’t handle the lines. Or the crowds. Any of it. Here is a picture of Sawyer with a Sensory Santa.

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Cooper was screaming. Casing the room looking for escape routes. I was sweating. It was terrible.

In saying all of this…we had a major breakthrough this year.

Cooper is almost 6. And this is the first year he noticed the Christmas tree. He attempted to decorate. He added lights and threw ornaments on the tree. This is huge. As his brother talked a mile a minute and helped with every single aspect of the tree, Cooper floated around us. I had told myself when we were getting the tree not to get my hopes up. Actually, that’s not true. There are really no hopes at all. That sounds sad and I don’t mean it too.  What I mean is I know my kid. He has autism. He doesn’t participate or join. And that’s ok. We’ve moved on.

But this year was different. I cried. I laughed so hard at how cute he was.

 

I know the holidays will be stressful again.

He still doesn’t care about presents. He doesn’t understand the concept. The kid literally has no wants. His needs are met. He has WiFi and his 2 kindles and his own DVD player. He has snacks. And milk. He has his blankets and his pictures and his train books. And that is it. He needs or wants nothing more.

Cooper even went as far as ‘asking’ me to have a little Christmas tree in his room. I have two small trees. Of course Sawyer HAD TO HAVE IT IN HIS ROOM. When Cooper heard that he patted his chest, patted the tree, and pointed to his room. Pretty great stuff.

I can look at this in two ways. I could say we are blessed to have such an easy child. He knows no greed. He is content and happy with very few things. That is a wonderful trait to have.

But the other side is where I tend to lean. If Cooper wasn’t so loud I fear that he would be invisible and forgotten. That is scary.

What am I wishing for this holiday season?

It’s the same as the past 6 years. I want my baby to talk. I want him to say ‘mom.’ I want him to eat a meal with us. And engage with his family. And hug his brother. I want him to sit by the Christmas tree and open up a present. I want to see him get so excited that he can hardly stand it. I want him to run to me and show me his presents. I want him to say something so cute and funny that everyone laughs.

I want him to be potty trained.

That is what I want. I want to get to know my son this Christmas.

I continuously remind myself that it is not a race to the finish line. We are crawling along. This year he helped decorate the tree. Every single morning he asks me to turn on the lights. He sits by it at night. He squeals with delight. He is so happy.

This is more than last year. I could tell myself it took years to get this far. I could also tell myself that this could be it. It could plateau here. I often feel the negative tug me down and I have to focus on the positive. That is the key. Keep moving forward. I need to be thankful for his progress this year.

So much can change in a year.

A Letter to the Family and Friends of An Autism Parent

Dear friends and family,

13606606_1381994731810983_7112512195913157613_nI am sitting here thinking about our relationship. And about how much I love you. And how I rarely see you. We joke that it’s because life is so busy. We have jobs and babies. Life is crazy. And how some day it will be better. We will have more time. One of these days we will actually get together and do something.

I’m not sure if that’s entirely true though…at least not for me. We are different. We are friends. We are family. But we are different. And we dance around it like it’s not true.

I want to say I am sorry. I am sorry that I don’t make plans with you. I am sorry that I won’t commit to doing anything. And mostly I am sorry that I cancel.

I feel it too. God I feel it. I feel the strain between us. And I miss you.

I know that I am not the woman you remember. I am different. I used to be so much fun. I was up for anything. I know that many of you questioned if I had Post-Postpartum after my son was born. I heard the whispers.

Just to be clear….I didn’t have it.

I didn’t fit into your world anymore. I would like to say that it evolved slowly over time. But that is not true. It happened all at once.

It happened the day Cooper was born. Before that we were the same. College, wedding preparations, baby preparations. I was you. You were me. We were young. We were blissful.

Then wham. I was different. I had a label. I was an autism parent.I immediately carried it on my shoulders. The weight was more than I could handle at times.

When our children were younger it was one thing. My baby didn’t sleep. Yours did.  He never stopped crying. He was chronically ill with ear infections and constipation. I was tired. I couldn’t speak about anything besides how my child was NOT autistic. I saw how you started to miss me. I saw how I started to slip away. Don’t think I didn’t know it was happening. I was part of every second of it.

But I could pretend then. We would trade stories of other mothers we knew who went through the same thing…and it turned out fine. They were fine. I was going to be fine. This was going to be fine.

You’d find a blog post or a news article and send it my way. We agreed it wasn’t autism.

Then the differences got more noticeable.

My life was suddenly doctors and therapies. I couldn’t relate to you anymore. And you most definitely couldn’t relate to me.

It was like I was in a movie. I watched myself turn invisible right before your eyes.

My child was different. Yours was not. Your child met milestones. Mine didn’t. Your daughter said her first word. Mine didn’t.  Mine screams and hits. Yours does not.

That is the blatant truth. We can dance around it. You can say that you are OK with Cooper. I hear it all the time from friends and family. I know you love him. We all do.

But my son is different than yours.

And I want to say that I am so sorry.

It’s truly not you. You are a wonderful friend. And I love you. But I slipped away and I don’t know how to come back.

I am sorry we don’t come and visit. The preparations for a visit to someones house are epic. Do you have a fence? Do you have WiFi? Do you have other children? Pets? Do you care about messes? The list goes on. Snacks? Sippy cups? Milk? In a sense I still have a newborn. A 60 pound newborn that can do some serious damage.

And I believe it when you say that you love Cooper. You don’t care.

But I do. I care. I care about parenting in front of you. I care that I can’t sit and talk to you because of Cooper. I care that I wake up at 4:15 am. I care that I got poop on your floor while changing my 6 year old.

The truth is….I care friend. We are different now.

You don’t have a label. You are not in my club. You are different.This is why I turn to other ASD parents. They get it. They are my people.

And now my baby is almost 6. We still don’t visit. You still wonder why.  And my friendships and relationsips still suffer. Some of you held on and for that I am so unbelievably thankful. You still text. And call. And some even visit. You force me to do things. To get out of the house. To have a life.

Thank you. If I haven’t said it to your face I want to say it now. Thank you for being my friend. Thank you for showing up.

In the back of my mind I wonder how long you will hang on. When will it be too much?

I know it kills you when I always say no. And even worse when I cancel last minute. I want you to know that I am always tired. Sometimes I can’t even put into words that level of my exhaustion. It’s more than physical. It’s pure mental exhaustion.

I want you to know that I wake up every day happy and with the best of intentions. And by the end of the day sometimes I can’t see straight. It takes all the strength I have to shower and go to bed. That was actually a joke. I rarely shower. It takes all the strength I have to just go to bed. To shut my brain off. 

I will go on Facebook and I see that you signing your daughter up for gymnastics.Or maybe it’s t-ball this time. I guess whatever activity a 5 year old does these days. I will see their smiling faces.

I will feel the pain in my stomach. I am over here researching special needs strollers for children. I am trying to figure out how I am going to pay for it. And how I am going to be strong enough to bring it out in public for the first time. How do I find one that won’t stand out. Or make us look too different.

What you are doing isn’t wrong friend. It’s amazing. I am so happy for. Your children are beautiful. You are beautiful.

I’m just not there.

I need you to forgive me.

I know I don’t always answer your texts right away. I rarely check voicemail’s. And I often don’t call back.

I need you to know why.

It’s not you. It’s me. What a cliché right?

I know you don’t know what to say about Cooper. You don’t know what to ask. Or how to help. I feel it too. And that’s OK. There is no right or wrong.

I am letting you off the hook friend. Autism isn’t your world. It is mine.

But you need to know there are other reasons.

There are weekend days when Cooper will whine all day long. It will start at 4 am and go until 9 pm. There is no break. The sounds are so loud. They are nonverbal. They are high pitched. It is more like screaming. It is anxious. It is loud. By the end of the day I am an open nerve.

If you truly know me you know that I always have music on. It’s always playing on my phone. It’s constant. I do it for two reasons.

I can’t take the silence. I can’t take the lack of conversation with my almost 6 year old.  And I can’t take the sounds that are constantly coming out of his mouth.

When the day is over and Cooper is in bed I will stare at him. I will sit by him and wonder how we made it though another day. A day exactly like the one before. And it will be the exact same tomorrow. I will feel more exhausted than I ever thought possible.

I will go in my living room and sit in my chair in silence. I will think about how he is living completely inside his own head. Isolated.

I am isolated too.

His disability has isolated us both.

I sit and enjoy the silence.

I do this because I can’t take one more sound. This is when I should turn to friends. But I can’t. I can’t go out. Because I know it will start all over the next day. And the next.

This is isolation of epic proportions.

I want to thank you for standing by me. And I want to ask you to not give up on me. Your children are going to continue to grow and thrive. There are times where I think Cooper and I will be in the same exact spot. Please remember us.

We are trying so hard to fit into your world. And I love you.

Seeing Your Words on a Computer Screen

12924577_1297285863615204_7815923785730277894_nI wrote a post a few weeks ago about depression. I didn’t really share it around. I kept it kinda private. It’s very hard to be honest in real life about depression. Even today as I read my repost on Breaking the Parenting Mold I struggle to believe I really wrote those words.

They are pretty raw. And vulnerable. I am almost embarrassed by them. And worried that people are going to judge me.

But, sigh, they are the truth. And I worry about sharing them.

Here is the post: The Stigma of Being s Special Needs Mom with Depression

Grief is a very large part of my life. I spend much of my day managing grief. Pretending it’s not real. Accepting it. Justifying it. Burying it deep down inside.

I had a pretty great conversation the other day about ‘choosing joy‘ above all things. Waking up and deciding to be happy. I want to do that every single day. I strive for that my friends.

This week I am doing great. Last week was pretty good too. Cooper is healthy. The appointments are down. We survived conferences and therapy and his last round with the GI doctor. We survived a broken kindle and Halloween. He is sleeping in until 6 am these days. He is eating. He is giving more and more hugs these days.

Today I am OK.

But the depression is always there. Brewing under the surface. I can feel it at all times. It’s a weight on my back.

As I drove into work today I was chuckling thinking about my two sons trick-or-treating last night. They were each a riot in their own way. And I will tell Cooper’s Halloween story here when I have time.It’s pretty great.

My mind started to wander as I thought about winter approaching. And Cooper’s birthday. He is going to be 6.

Cooper’s birthday is a very low time for me. He is a December baby. Add in two holidays and the stress of autism and expectations and you have the perfect combination of parent depression.

December is bad for me.

Age 6 and no words. I will start repeating it and analyzing it. I’ll do it for miles while driving. I remember thinking that at age 2, 3, 4 and 5 that soon he would be talking. Everybody talks. Everybody speaks.

What does 6 and nonverbal look like? What does 10 look like? And I’ll keep going. A teenage and nonverbal. A man and nonverbal.

It will cycle through his life. Flashes and glimpses of his future. Until I put a stop to it. And fight to stop thinking about sad things.

Today I am OK.

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Follow me on Instagram to see a glimpse into life with a nonverbal ASD child.

 

Preparing for an ASD Halloween….

h4Holidays are an interesting time for a parent of a child with Autism. And each holiday comes with it’s own unique challenges. There is also the fine line of….’how much do we actually participate?’

Cooper doesn’t understand Halloween. Or costumes. Or Trick-Or-Treating. For starters he is the least greedy kid ever….he will get one piece of candy and be great for the rest of the night. He doesn’t like to walk so the idea of walking from house to house is ridiculous. He would need to be carried or put in a stroller. He doesn’t like crowds. Or loud noises. Blinky lights make him crazy.

So one would think that Halloween is out.

But in a way that is not fair. Nor is it challenging him in a healthy way. I firmly believe that he needs to try new experiences.

“The most important thing people did for me was to expose me to new things.” – Temple Grandin

So for the 5th year in a row we are giving it a go.

A few rules that I live by on Halloween as an ASD parent:h2

  1. Be ready to be done at any time. When the child is done..they are done. That could mean 1 house. That could mean 5 houses.
  2. Have bribes ready. Bring snacks. And lots of them. Most likely your ASD child will be too picky to eat most of the candy given out.
  3. Make a sign that explains what is happening. It will help people understand why your child is not speaking words. And grabbing candy. And pushing. And laminate that sucker. ASD kids love to crumple and rip paper.
  4. He doesn’t have to wear the costume. Let him wear what works.
  5. It’s ok to be sad and watch the other children enjoying it all. Don’t beat yourself up. You are human.
  6. Wear comfortable shoes. Be able to chase and carry.
  7. Let him have the damn iPad. It’s not worth the struggle.
  8. Try and get pictures and then move on. It’s fine that yours are always a blur. Or of your kid looking at an iPad. It’s fine. Remember that.
  9. Have friends and family around to help with the other children. This is big for me. Cooper’s dad and I go to great lengths to make sure our other little guy gets to have ‘typical’ holidays.
  10. And lastly, provide a little Autism Awareness to people that otherwise know nothing about it. People stare. Adults stare.  Children stare. Learn to smile through it. It’s taken me years but I can do it now.

Here are a few pictures of my little Justice League from Friday night. We went to a Fall Festival. Cooper lasted 15 minutes. Sawyer, my typical kiddo, lasted 30 minutes. And you know what…it worked. It was fine. Preparations were in place. Jamie and I drove separately so he could bring Cooper out to the parking lot to watch a movie when he got overstimulated. We let him have his iPad. We let him run and dart and roll and push and eventually kick and then he left. And it was OK. We went. And that’s what matters.

h3h1

 

And last year. (This year I laminated his sign!)

This is Beautiful. From a 10-year-old Boy with Autism.

I was scrolling through Facebook today and this post jumped out at me. Let me preface by saying that at one point I liked so many autism type blogs and organizations that now my whole damn news feed is autism. I’ll be honest. That’s depressing. I’ve actually started unfollowing some. It just got to be too much.

This one jumped out at me by the National Autism Association.

A mother writes, “My 10 year old son with Asperger’s was asked to write a poem for school titled ‘I Am‘ he was given the first 2 words in every sentence. This is what he wrote…” Here is his poem.

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My heart breaks reading this. I can’t imagine what these kids and adults with autism feel. The loneliness. The feeling of being different. What it’s like to always feel out of place, like a castaway.

As parents we would do anything to take away our children’s pain. And the sad truth is that isn’t always true.

If could crawl into Cooper’s brain and world I would in a heartbeat. There are times when I sit next to him and try but my little peanut doesn’t stop moving. Since the day he was born I’ve never had him for more than five seconds. That’s tough. So I need to remind myself that when he shows me a train or a video I need to stop and pay attention.