Meme Time Monday

We're gonna go with this one because all of the Asthmatics in our house are having flare ups this morning.

No Smock Zone

    I try not to compare myself with other Moms. We are all so different. Our personalities, our kids, our lifestyles and experiences; they're all different. So, to me it doesn't make sense to compare our family with others.

BUT

Sometimes I get that little voice that says,

 "Would you look at that. Don't you wish WE could do that/have that/go there".

And usually it's when I see little boys or siblings in smocked or monogrammed outfits.

The Holidays are in full swing and maybe it's just in the South but OMG these sweet little babies in all the fall themed smocking is killing me ya'll.

 I see pumpkins and tractors and rows of corn with big ole' initials in the middle and I just melt. I love seeing all the new Facebook pictures of my friend's beautiful children .

We may have to wear shorts for Thanksgiving down here but by goodness we will rock that gingham and smock.

And then the jealousy creeps in.

Big has major sensory issues with clothing.

From tags to seams to the thickness of fabric and the height of his socks and the crease in the elbow. We can find issue with most things that aren't gym shorts and plain t-shirts, so smocking and the big thick monogram in the middle is, obviously, out of the picture for us.

With that said, it isn't just Big's sensory issues that make that coveted smock out of reach for us.

For me to be a stay at home mom, we've had to make some hard choices and sacrifices.

Name brand clothing is one of them.

We pull the strings tight to make what we do possible and we have to laugh off comments about how people have to make bank to survive on one income or snide comments about how nice it must be that I stay home with our boys.

 It is nice, it's a blessing for us because if I were still working, we would be in an even tighter place but it's hard and one of the things that make it hard is sometimes not being able to blend in seamlessly with others around us who are in the same stage of life.

I still have some vinyl appliqué's that work for Big and soon enough he will be too big or too cool for monograms anyway.

 I love our life and I love the fact that we are different and we have to be creative and adapt to our circumstances. But I'm also human and sometimes I just want to go with the flow. Sometimes I want our choices to be easy and our days to blend flawlessly into one romantic happily ever after but I understand that life doesn't work that way and even though today I may be a bit jealous, I know that this life is precious. I live an awesome life with the coolest kids and most loving husband I could ask for and if having  that means maybe I don't get to monogram the crap out of everything in sight then I think I can deal.

I'll let myself feel the jealousy and touch of sadness for today knowing that it'll pass by tomorrow and we can start another awesome day with this crazy little family.

Note: My husband would like me to note that he has zero problem with this situation . He  believes boys should be in holy jeans, dirty shirts and boots.

Answering Mickey Mouse

Today my son answered Mickey mouse for the first time and I cried.

We've been watching Mickey Mouse since he was 6 months old.

 *I know I know!*

 and this is the first time that Mickey Mouse has asked a question and my son has answered him within the allotted time frame.

 That is a huge step for us. 

That's massive. 

That means his speech processing is leaps and bounds from where it was 6 months ago and that my failures with therapy and learning to balance life really haven't been failures.

I've been looking for these huge steps because outcomes are what keep me motivated. 

Results let me know that I'm doing what I'm supposed to be doing, the way I'm supposed to be doing it. 

I have to be honest though, those big moments haven't been happening. I've felt like I was failing and I just knew that Big was going to start reverting soon.

I've struggled more than I anticipated with adjusting to a new baby. He's a great baby and he's happy and we're happy but before I got to my 3rd trimester I had a system. 

A strict system with 15 minute activity allotments and 1 hour meals and 2 hour naps and dinner prep time slots. 

It was borderline OCD. 

It's what kept me on track and it's what kept me going.

Then when my 9lb baby got too much for my 5 ft frame, I couldn't sit for table time. I couldn't sing our songs and I couldn't run and play. I felt like Little had put me on bed rest and I started to worry that I couldn't handle it.

I worried and still worried and kept worrying and here we are 7 months later and I realize that I have been worrying and reaching for new organizers and making new schedules and creating new templates and none of it mattered. 

We have been doing what our family needed to do, in the time frame we needed to do it in and it is working out just fine.

Maybe for this first year, we just need to learn about each other and just... live. 

Maybe we can survive without the schedules and specified play times. What if he doesn't need sensory bin time at 3:30 or Action recognition practice at 4 everyday?

Obviously, it's good to have a schedule. Kids need consistency and an understanding of what to expect but I think I'm comfortable now with loosening the schedule a little. I think I can let go of the every 15 minute template.

 I've seen the big step and notice some big changes without it so I think I can just let us "be" .

I don't know how I never added "Answers Mickey mouse " to our IEP goals list J but now I know.

Our Autism Journey-Part III

 Therapy and life as we know it

*Note: I am not an expert. I am just a Mom who is doing the best I can while trying to make the best decisions for my family.*

When we got pregnant with Big, I lost my job. Actually, I lost my job the same morning that we found out that we were pregnant.

We chose to see this as a blessing.

We had just lost a baby early the previous year and my income wasn't enough to pay for insurance and daycare, so in the long run, it would save us money for me to stay home. We decided that I would stay home for the duration of my pregnancy and the first year with the baby and then we would start looking into me going back to work.

Now that we had a diagnosis, those plans changed.

There was absolutely no way for us to manage the enormous amount of therapy that Big needed if I went back to work and it was impossible for us to hire someone to care of him and manage all of his therapies.

So, that left me responsible for the remaining 23 hours of therapy a week that we wouldn't get from private and home therapy.

We ended up not being able to afford the ABA therapy that Big needed.

Shockingly , this awesome therapy that is proven to help children on the spectrum is not covered by our or any other insurance that is offered in our state. 

I was baffled but I knew that he needed it and still needs it.

Therefore, I watched video after video online. I read articles, spoke with his therapists and his pediatrician and also scoured Pinterest for any and everything I could find to get us started.

I made schedules and picture books and made sure to include him in everyday tasks to try and teach him how things work and why they work that way. I looked into a Montessori style approach and I've just blended and shifted things as we go to make them work for what Big needs.

      We played.

Oh we played and still play. 

Play therapy is my favorite.

You can really get to know a child, typical or A-typical, best by just playing with them. No expectations, as few rules as possible, and just pure imagination.

That's what we do.

I try to make sure that we have a balance of work and play.

I am a strong believer in letting children be children. Even the children who may do things differently or express themselves differently deserve to have free play where there is no one directing them or making them play "appropriately".

I knew that I wanted to give Big freedom to be himself from the start and as long as he wasn't endangering or hurting himself, then I let him have at it.

 I let him stim to his little heart's content when he has free play time and I think it really helps him.

     Before Little was born we were doing 15 minutes worth of an activity or type of therapy 4 separate times in the morning and 4 in the afternoon which ended up totaling 4 hours a day worth of therapy.

Since my last trimester with Little and up to now it is more like 2 hours total of therapy a day and we still have private Speech and Occupational Therapy.

We have slowly transformed his play room into more of a therapy room.

He has a small indoor trampoline, a make shift ball pit, toddler mattress and pillows to use as a calm down corner or even a crash pad, a calm down tent and sensory toys galor.

We decided after Little got here that they would share a bedroom (or their clothes and furniture would share a room since they are both still co-sleeping with us) so that we could make sure that all areas have a distinct purpose (e.g. Play room is for toys, bedroom is for rest and sleep, kitchen is for eating). it makes things a little easier for us.

   We initially started with home therapy through our states Early Intervention Program but this year Big moved from that
program to a School program. 

This was a terrifying step for me because I hadn't decided that I wanted to put him into a Public School yet.

I still considered that decision being 2 years into the future.

 I'll be honest. I panicked at the thought sending a child with multiple food allergies, asthma, autism and sensory issues to school where I couldn't tell people what he was trying to say or what he was telling them with his body language and stimming.

I've spent the last 2 years watching him and learning him.

The thought of sending him off to someone who didn't know him or understand him made me freak out on the inside and a little on the outside too.

 But, I knew with a new baby in the mix and the levels of stress that any special needs mom has to power through was going to be a lot.

We didn't really have anyone who was pro-school in our family either which made the decision even harder for me.

The Grandparents more especially weren't thrilled about it.

Ultimately, we had to make the best decision for Big and I really felt like I was slacking with his therapies. We came to the conclusion that he could only benefit from being in a structured environment with professionals who know what they're doing. Opposed to sticking with me and a new baby all day and not getting the things he needs.

We of course did a few interviews and got everything squared away and we started him at the beginning of this school year.

It was the best decision we've made for him.

He absolutely loves it.

The little baby who used to cry when I would drop him off 2 doors down from our classroom at Church is now waving me bye so he can go have fun with his class.

We have been blessed with teachers that he loves and loves him and he seems to like the other kids as far as we can tell.

 He is still a little awkward with how he approaches other children but I feel like having him around them part of the week can only help him build stronger social skills.

Since we added the new baby to our circus in April he has done wonderful. He adjusting almost immediately and really seems to love his little brother.

 He holds his hand and gives him kisses and lets him pull his hair without a complaint.

We are still learning how to live in this crazy world just like everyone else on this planet. We are taking on challenges as they come and we are trying to live a full, happy, joy filled life.

We want others to see our life and know that Autism is not the end of the world.

In fact, you get to live in a world full of creativity and awesomeness that a lot of other people won't get to experience.
There are hard days but there are way more awesome days, you just have to wake up and choose joy.

We live on this great big spectrum of what happiness can be. This is our end of the spectrum and we look forward to how this life will grow us and use us.

Our Autism Journey- Part II

Part II- Diagnosis

It was Big's 12 month check up.

We received an official diagnosis of Asthma and then we started asking questions and getting a direction to go in as far as his developmental delays.

Our wonderful pediatrician was very attentive to what we were seeing and not seeing and she seemed to be as concerned as I had hoped she would be.

We started with a hearing test.

 This was an obvious first step since he wasn't looking in the direction of sounds around him, responding when his name was called or reacting in the way he should when sounds that should scare the be-jeezus out of him happened.

Other than the fact that he lost his mind when they put the things in his ears it came back normal.

Perfect hearing.

Step one complete.

After this test we went in for our food allergy panel and found that he was allergic to milk and eggs and then later found that he was also allergic to tree nuts. He also has a sensitivity to soy but it doesn't cause the type of life-threatening reaction that the others do.

So, in the midst of all of the other testing and new asthma meds, we had to overhaul our diet too. Yay!

The next step was to a child psychologist to start the interview and evaluation process. The first interview was to get a family history and an overall idea of what we had concerns about.

This doctor was also magnificent.

She listen to me fumble over my words and watched me chew my fingers as I nervously went through all of our families medical history.

She stopped me a few times and clarified what I might have missed or skipped, all while being interrupted by me prying Big off of a door knob or pulling things out of his mouth and stopping him from climbing a large doll house in the corner.

She smiled, paused, ignored what she needed to and continued on as if there wasn't a tiny tornado destroying her office.

She ignored my red cheeks that were burning from the embarrassment of not knowing how I was suppose to control my child and when I had to sign the papers at the end, she looked past my hands that were shaking from the stress of having him in such a small space for so long.

 She smiled and told me that she would see us back after the play evaluation.

I carried Big to the car, strapped him in and drove off with tears streaming down my face.

Daddy was with us for the play evaluation and it was a huge relief to have someone there with me that wasn't a stranger.

We went over the things that concerned us and she nodded and wrote everything down. Then she asked us what I still think is one of the hardest things we had been asked up until that point in our lives and that was for us to let him play by himself and don't try to correct or influence his play.

Daddy and I looked at each other and I could tell that he was going through the same thing in his head that I was. Thoughts were going off in my mind like gun shots " What if he doesn't understand? What if he puts things in his mouth? What if he cries? What if, what if , what if????"

It was hard but we made it through with Daddy only getting on the floor with him for a few minutes before I reminded him that we weren't suppose to interfere. She told us that she saw some things we had mentioned but that she would write up her full report and the doctor would go over all of the results with us at our final appointment.

November 27, 2013

We arrived a little before our appointment time because we apparently wanted sit an agonizingly long time in the waiting area before being called back.

Dr. C wasted no time, which was exactly what we needed.

Even though I already knew what she was going to say, I think I had held on to this small hope that I was over exaggerating some of his symptoms and that we would just need

some speech therapy to catch him up and then everything would be fine.

When she said the words Autism Spectrum Disorder, it felt like a hand tightened around my heart. I knew, but hearing it out loud makes it real.

It takes it out of my head and puts it on the table in front of us.

She believed that he was in the moderate to severe range due to his speech and emotional delay. His physical development was close to being on track and his cognitive delay seemed to be mild. He also had a lot of sensory issues that were a significant concern.

I held it together and asked the questions that I needed about what our next steps would be. We talked about therapy referrals and the amount of therapy she recommended. I was shocked when she told me that she wanted him in therapy 24-36 hours a week.

36 hours?!

That's an entire work week! How are we suppose to do that?

How do we even start? 

She recommended ABA, Speech Therapy and Occupational Therapy.

I was overwhelmed.

 We got home and I cried some more. I felt like I cried for a month straight but it was more like a day. I'm not one to linger on emotions. I let myself mourn the childhood that Big wouldn't have and then I moved on to figuring out how to make his life great regardless of if it was the happy childhood I had in my head or one that we had to do a little differently.

So we pulled on our "big girl panties" and we waited for our calls from therapy. We got through the holidays. We told our families and we got waves of support and some shock. My sweet sister-in-law reached and told me to call if I ever needed anything. He daughter was diagnosed with Sensory Processing disorder and a speech delay so she understood completely that sometimes you need someone who's walked the path before you.

The overwhelming support was wonderful and we knew that we could get through anything.

When I told the ladies group at our church about his diagnosis, I finally said out loud that I felt that it must be my fault. I must have done something wrong during my pregnancy or when he was a baby. When I cried and said how ashamed I was, one of those sweet women told me,

"It is not your fault. There is nothing that you did that caused this. Right now,This is your crisis moment and there will be more. You will feel this way again and again. But it is okay. You will be okay and Big will be okay."

I have held onto that. I hold onto that to this day. I committed it to my memory so that every time I feel like I'm failing Big, I can remember that it isn't the first or last time I will feel that way.

…to be continued.

Dear Playground Moms

I didn't hear you. My husband did. 

It's a good thing that I didn't hear you because I have far less tolerance and self control for your type of blatant, willful ignorance.

You asked the other two Moms who were standing in the center of the playground along with you if they'd heard about Allison.

 Her daughter was diagnosed with Autism. 

They'd just found out yesterday.

 You asked them if they could just imagine having a child like that. How awful it would be, how you couldn't deal with something like that. 

And then they shook their heads with shock as they agreed with you.

It wasn't what you said but how you said it.

 Honest concern is one thing but this was not concern. 

This was hurtful, malicious gossip. 

You were talking about someone who was suppose to be your friend. 

You were talking about her child like she was some sort of pariah. I'm ashamed of you.

In a world where we advocate for kids who are bullied. Where we post encouragement on our social media. We call people to pray that our country will learn tolerance and acceptance. 

You make me feel like we stepped back 50 years.

I'm happy my husband bit his tongue, shook his head and carried on watching our beautiful, joy filled child play. 

Because I couldn't have.

I would've made you look at my son and ask you if you saw something as appalling as your idea of Autism. 

I would've made you watch my boy brave his way across a swinging bridge. 

Something he's never done before. 

I would tell you to watch how determined he was to make it across. How he has to try so much harder we could imagine but he does it.

He makes it across and he smiles.

I would tell you that he gets overwhelmed and he doesn't know how to tell me how he feels but that he always says "I love you Mama".

I would want you to see our family and the happy boy on that playground that you probably didn't realize was on the Spectrum that you so thoroughly do not understand.

In the moments after hearing the things that you said, I was incredibly sad knowing that he would come across another you in time. 

He will have to deal with hatefulness and judgement from people who choose to be wholly ignorant.

I wanted to defend your friend whom I've never met. 

I wanted to tell you to call her and give her your love. 

To tell her that you don't know how their family feels right now but that you would be there if she ever wanted to talk or just needed a friend. 

And I wanted you to mean it.

If I could go back in time and hear the words you said, I probably would've told you all of this through the tears of my heart breaking. Because to be honest, I feel like you said it about me and about my child.

Every child is different and one child with autism is one child with autism. 

Your "friend" will face different struggles than we have. 

She will cry about different challenges than I have. 

She will have different worries than I have but she and I will have to deal with one thing the exact same and that's people like you.

I feel sorry for you Playground Moms. I really do. 

Our Autism Journey-Part I

The Beginning 

Our beautiful boy was born  May 12, 2012 at 11:14 pm via emergency C-section at 37 1/2 weeks. He was 8lbs 1oz and 20 1/2 inches long. We named him Charlie Drew after both of our Fathers. We now lovingly call him Big Trouble because that's what he is. 
He was everything we ever dreamed of having. 
He had 10 fingers and 10 toes, 
Blue eyes, reddish-blonde hair and all of the chubby little baby rolls you could stand.

He was perfect.

Everything was wonderful.

 Like any new mother, I meticulously researched milestones and development. I read book, news articles and statistics. I had facts about facts about facts.

We were told over and over how alert he was and how he was just so curious.
 He was a quiet baby but I was told his Daddy was too.

He smiled, reached, grabbed. He rolled and crawled and was so quick to learn everything that he wanted.
 It was great. He was great. 
We had our little family and it was perfect.

I kept at my Mom's house with his cousin, Miss Sassy, when they were small and at around 9 months I started to notice a few things that he wasn't doing but she was excelling at.

I knew he was quiet but next to her, he seemed nearly silent.

 I was told that boys talk later. Nothing to worry about.

I tried putting it from my mind but something told me this was more than a boys will be boys kind of thing.

 The next thing I noticed was pointing. Or rather the lack of it.

 We thought that putting his arms out or reaching for a toy was the same or good enough but other babies his age were pointing,
 as in, 
looking at something, pointing at the object, then looking back at whoever was with them and making it clear what they wanted and that they wanted it NOW.

Big didn't do that. 
In fact he rarely looked  as if he were relaying information or wanting me to understand something he wanted.
When he looked, he would just smile and move on.

I got up the nerve and said something to my husband.

 He innocently brushed it off.

Even at our 9 month check up when our Pediatrician asked us about some of his milestones, I felt like I should say something but we were being encouraged from all sides that he was great. 
I felt silly.
 So, I stayed quiet and my husband told her about how well we believed he was doing.

Our child was perfect. 
So what if there were a few things he did differently or hadn't done yet. 
All babies are different.

Everything is fine.

I heard a version of that sentence for 3 months.

"He's fine"

"Everything's fine"

"You're just a worried first-time Mom"

 "He seems great to me"

"Boys just develop slower"

 and on and on and on.
 For 3 months.

In the midst of these worries, we were also dealing with very frightening allergic reactions to food and the seemingly inevitable diagnosis of asthma.

So for me to add yet another worry on top of the very stressful existing problems we were already having made me look

…..well…..

 like a crazy  overly worried first-time mom to be honest.

Then, I started noticing even more things than before.

He had a hard time coping with things that others his age were doing fine with.

He hated the way certain clothes felt.

He rejected certain textures of food or if something sticky got on him he would all but have a breakdown.

All of these can be written off as normal development but all of them combined turned them into red flags waving in gale force winds to me.

He started flapping his hands, rocking his body back and forth, chewing his clothes and hands and sometimes his arms to the point of leaving teeth marks.

He wasn't responding to his name. Loud noises that should scare small children didn't faze him. He needed constant contact and rough play. He was always spinning in circles and looking for different textures to feel. He wouldn't meet my eyes.

I was sad and scared and felt alone and a little like I was losing my mind.

I remember asking God "What do I do? This is the baby that I begged You to give me for 2 years and now I feel like I'm failing him and You. You trusted me with him and now I'm failing You. Lord, what should I do?" and he gave me peace and understanding and most of all strength.

I now know why God gave me the stubborn tenacity that plagued my parents when I was a child. It was for this.

So I could handle this.

So, I didn't give up. I couldn't ignore this. I heard the brush off's and denial but I knew something was missing. When other babies were starting to say "Mama, Dada, No, Want"  Big was just starting to Coo and babble. It was time to get someone on my side.

I did what most people would do in this age.

I went to the internet. 

 I Googled the things that I'd noticed and  "Autism" kept jumping out at me.

I have a cousin with Autism, so even though I hadn't spent much time with her, I had heard some of the things that their family had to work with and challenges that she faced.

 I saw similarities but nothing that screamed "YES, YES THIS IS WHAT IT IS".

I found youtube videos and searched for some of the things he was doing and I found my answer.

I don't remember the name of the video but It was titled something like " Before our diagnosis" .

 It was a little boy a few months older than Big.

He was spinning and flapping his hands. His Dad was talking to him, shouting his name, banging pans and honking horns but the little boy never looked up.

He acted like there was nothing else in the world except the top n his hand.

 I saw my son in that video and I cried my eyes out for the rest of the day.

My husband got home and I showed him the video.

 I told him what I was seeing.

I told him at our 12 month check up that we were going to talk to his Pediatrician and see what she thought.

 I cried as I told him that I knew it was hard to accept but if we just ignored it, it would be so much harder for Big in the long run.

 I knew the sooner we got started on this path, the better.

He agreed wholeheartedly and told me that he was behind me with whatever we needed to do.

And that's where we were by Big's  first birthday.

We were beginning to accept that whatever was happening would happen whether we ready for it or not and that it was best for everyone, especially Big, if we all went forward with faith and optimism. And that's exactly what we did.

.........To be continued in Part II