Is this thing on??

All my babies holding hands of their own free will...swoon!

So, obviously I took a *short* break in my little blogging adventure. I thought that I could just do a little here and a little there during my free time. [Insert laugh here]

Funny thing about being a mom to any number of kids is...


There is NO such thing as "free" time!!  In the words of Stank the Tank "emiright, kids, emiright??"                              


I have also been in, what I would call, an epic creative slump.  Maybe a better term would be a major lack of motivation and self confidence. Definitely the lack self confidence! I am in no way, a professional writer. I'd love to be one day, but for now, I decided to just start here.

At the bottom. (you said bottom....#boymomsohard #obvi)

I don't know what I am doing.

I do not claim to have a freaking clue about anything!

I do know about OUR lives.

I do know what we have gone through and what we continually go through.

I still have a lot to learn and am enjoying (or learning to enjoy) learning on a daily basis.

And that's good enough. 

I will share our struggles along WITH our triumphs!!

After all, not a single one of us who goes through this life full of bliss without getting a little...eh hem...something that rhymes with bliss** on us in the process.

This is us...

This is ME....

Well, me and the one and only Stank the Tank;)

Love it or Leave it. And that's that. 

Is anyone even still out there??

I just wanted to drop a quick note letting all of my non-eixistant readers that I am ACTUALLY working on a couple new posts. lol

Stay tuned...

What is Autism? Part 3

Fast forward our lives  6-7 years and four separate autism diagnosis' later.

 

Our lives have in deed, been forever changed. But not the change you think of. Oh how heartbreaking and devastating those first few days (or years) are. 

 

The initial thought that this life, is actually a death sentence.

Quite the opposite...

 

It's a LIFE sentence.

 

I mean that as the most wonderful thing (for the most part). While yes, we have our daily challenges and struggles, and will for the rest of our lives. We have FAR more success and accomplishments even their typical peers can't comprehend.

Our lives are also far better than that of our special needs counterparts. Even other kiddos with autism also deal with epilepsy and other life threatening co-existing conditions.

Our kiddos are healthy.

Mostly.

There are some co-occurring diagnosis' that also go along with their specific situations. Such as, they severely lack essential vitamins and minerals and amino acids. Those that are needed to have homeostasis in ones body. There are a few contributing factors to this. First, most kids on the spectrum have a SEVERELY limited diet. I'm not talking your typical toddler picky eater, it's way more complicated than that. Some kiddos have been hospitalized for refusing to eat or drink.

 

My Joe (5) REFUSES water and most other things.

REFUSES.

We even tried to not give him anything for hours and hours to wait for him to break down. It was 2 days later, and I had to give in. I've heard far too many stories about kiddos having to be hospitalized just because they were dehydrated because they were refusing to drink. It doesn't matter how HARD you try.

You CAN'T make them.  No matter what you think "might" work.  So now we keep a detailed food journal coupled with a weekly weigh in. And pray a G-tube is not in our future.

Not to mention that the majority of their little bodies have issues with the inability to detox all the nasty toxins out of their bodies. On the flip side, it  also keeps their little bodies from being able to absorb ANY nutrients that we are ABLE to get down them. Which then turns into a tailspin of related conditions. Which is mainly in their gut. It really does control the entire bodily functions.

With all this being said. I am so grateful for my children! I hate when people say they wouldn't change the fact that their child has autism "because that's who they are".

I disagree on many aspects of that statement.

First of all, that means you're telling me that "autism is who your child is".

 

FALSE.

 

Your child is who he/she is because they are their very own person. They just "happen" to have autism. Which is only a small part of who they are. It doesn't define them.

It's not WHO they are, it's just a small part of them.

A mere description. 

 

It's not their only reason for existence. I hope that makes sense with out sounding to harsh or judgmental.

 

That's not my intentions. At All!

 

Second of all, while I accept the fact that my children have autism, and they are so super and unique because of it, I can't say I wouldn't take it away if I could. If we even had a CLUE what goes on in their little minds, I think we would all be blown away.

 

I would take away the fact that my kiddos can't tell me when they're scared, hurt or sad. When they are being bullied or just totally unsure of their life's surroundings. When they get sick, they don't know how to tell me exactly how they feel or what's going on. I have no clue on how I should be helping.

 

I would take away the meltdowns. In public. Meltdowns are usually a result of an underlying issue they can't communicate with anyone. I would take away all the teasing, bullying and being purposefully left out by peers, just because they are "different" or they seem "weird" according to societies standards. I've cried myself to sleep thinking I would give ANYTHING to change the fact my baby comes crying to me because HE KNOWS he is "different" when all he wants is to be accepted.

I once heard it explained to me this way, imagine being dropped off into a foreign land. You don't really know how to navigate to be able to get you around due to the language barrier. You can understand the language a little, when being spoken to. However, you have NO CLUE on how to speak the language to be understood. Imagine how frustrating that would be. Now imagine having to live there for the rest of your life and NEVER being able to speak the language. At least not with out INTENSIVE interventions.

This is basically what these kids live with on a daily basis, for the rest of their lives. We work and work on it. Yes, we do have success, but with that usually comes regressions. But that will NEVER slow us down. We are determined to make their lives as happy and functional as possible.

 

I love my children with all my heart!  I will continue to move heaven and earth trying to make their lives the best possible for them!!

 

As any mother would do.

Nut allergy...who would've thought?

Let me start of by saying I am SO grateful for my kiddos!

BEYOND grateful!

We have an insane crazy life. But it's our life, and we love it...most of the time. 

Now we are embarking on a new journey, a new path on this road of special needs. One I would have never imagined. 

But here we are. 

It all started just over a week ago. Nana came over and, oh so lovingly, gave James a banana nut muffin. 

Nobody thought anything of it. 

It was maybe 10 min later he started scratching his tongue with his fingers. It was weird, but we didn't *really* think too much of it. He had his shirt off, and I saw a couple hives. I thought it was the dog, which we know he has an allergy to. (We're in the process of trying to find our dog a new home)

I saw the hives, so I gave him benadryl and put some hydro-cortisone cream on him. 

He only got worse. 

And FAST. 

I finally decided to put him in the bath to wash the "dog" off of him. As soon as I stood up and grabbed his hand, he threw up everywhere. So, I put him in the tub, and he just continued to scream. This kid is obsessed with baths. He was in there maybe 5 minutes. 

We got him out, then I found the oatmeal bath I had in the cupboard. I decided to put him back in with that in the water. It maybe lasted another 5 minutes, if that. As we were getting him out of the tub again, I saw his lips were turning blue! 

Terrified me! 

An ambulance was called and they gave him a shot and rushed him to the ER. 

This photo was taken right as we were leaving my house. It breaks my heart looking at this to this day.

This was one of the scariest mommy moments I've EVER had. This kid sure gives me his fair share of scary moments. He's always full of surprises!

While we were waiting for all the meds to work, they took some x-rays to make sure his lungs and airways were ok. 

As they were taking the x-rays, they asked me if he had a button on him somewhere. The answer was no, obviously. So then the techs asked if he could have swallowed a penny? My answer was, "I wouldn't be surprised". 

Sure enough! The kid had swallowed a penny!

It only took 5 days for him to "pass" the penny. We are extremely blessed that it didn't do any damage, as there was a big potential for it to get caught in different places. 

We were only in the ER for a few hours. It could have definitely been worse. 

A LOT WORSE!

The next day was a day full of more Dr appointments. We had just seen the allergist a couple weeks before, and they tested him for environmental allergies. Which he ended up with quite a few of them. But he wasn't tested for any food allergies. 

After seeing the allergist on that following visit, he ordered a huge panel of blood work. He diagnosed him with walnut, and most tree nut allergies. He's not allergic to peanuts, but it's looking like it might be every other yummy nut we love. 

He wrote a prescription for 4 epi-pens. One for school, home, mommy's purse and an extra one just in case we need more than one on any given reaction. 

The blood work was done last Thursday. The results aren't back to his Dr yet. Until we know for sure which nuts are the culprit, we are banning ALL nuts around him. 

When all is said and done, he ended up being ok. We just have a different world we will learn to explore. 

It's a tough world.

A scary world.

But we will take it one day at a time. One thing being a special needs mom after all this time is, I've learned to do that. 

ADAPT!

Just take ONE day at a TIME! 

That's all we can do. We will dive into this new way of life like we've done 4 times before. This is just one more thing to make my kids SPECIAL!! 

I wouldn't change that feeling. My kids are indeed, SPECIAL. 

-B

What is Autism? Part 2

As I was saying, after that first ( Sissy-4yr) and second diagnosis (Jack-20 months), we threw ourselves into the autism and special needs world. With out a clue of what we were doing. It's funny how so many people who "know someone who has a child with autism" were so quick to tell us what we need to do. (Well, they still do, but now we realize they only mean well) In fact, other autism moms were quick to tell us "you need to try this diet, supplements or therapies" etc.

So we did it ALL! Or tried at least.

We jumped in with all we had. I wore myself out emotionally and physically. I was up on the Internet till all hours of the night. Feeling guilty for the all the therapies I kept reading about. All the ones we knew we couldn't afford. Not to mention the time and availability for all these "magical cures".

So I stopped.

Took a step back.

I took a breath. A few of them actually.

I realized this was a marathon, NOT a sprint. We were in this for the long haul. I needed to have enough strength and endurance to be there for my kids. Not to mention to have my wits about me.

ALL of my kiddos needed me. And I needed my sanity and to stop the crazy lady I had become.

So we did what we could. I tried to not beat myself up for what we couldn't do or afford. Some therapies and supplements worked, others didn't. The gf/cf/sf diet worked wonderfully for my step-daughter, but the boys wouldn't touch it if their lives depended on it. We truly learned as we went. You know the saying, "you live and learn"? That become my motto.

We LIVED with our hearts open and vulnerable. But we learned SO much! And continue to do so.

We would try what ever we could, and we tried to give it enough time to decipher what was going to work or if it was time to move on. The most important thing, our children THRIVED. More so than most would have given them credit for. I'm ashamed to admit it, but sometimes I'd find my self thinking the same things. That I was never going to hear my babies say "I love you mommy".

But they did!

All of them, eventually.

And that comes in as a close second as being the most incredible thing to happen in my life. The first being the moment they were born and brought into our sweet family!

We work and work on it. Yes, we do have successes, but with that usually comes regressions. But that will NEVER slow us down. We are determined to make their lives as happy and functional as possible.

I am so extremely blessed to be their Mama! They teach me WAY more everyday, than I could possibly even dream of teaching them. They teach me joy. acceptance, patience, kindness, and best of all...UNCONDITIONAL love. They teach me to work hard! Even when it is SO hard! We just have to push through!

Seriously, everyday I count my blessings that I GET to be their mommy!! I couldn't be MORE proud!!



-B

What is Autism? Part 1

You notice your child isn't quite hitting all the milestones you know they should. Milestones that don't seem like a super big deal. So he's not pointing yet, big deal. He's a late crawler and walker. "He's a boy" they say. "Boys always develop slower than girls." So you wait. And wait. And wait. Your gut is telling you, no screaming at you that SOMETHING is wrong. But "they" tell you you're being paranoid. So you wait some more.

Then the time comes when you just can't wait any longer. Something is very wrong with your precious baby. You want answers. You NEED answers. Why is he crying NON-STOP? Why won't he take just any bottle or cup? It HAS to be that one.  Why won't he sleep ANYWHERE except his own bed? Why does he sit in the corner spinning the wheels on a car, while all the other children play? It's so frustrating! Most of all, it's so HEARTBREAKING!!!

So you seek those answers. Your pediatrician tells you "he's a boy, they develop later than girls". But he sees the concern on your face and the shaking in your voice. He can see that you're at your limit. So he refers you to the states early intervention program. (EI).

EI comes out to evaluate him. They say he lacks severely in most skills. They notice he doesn't talk. Not only doesn't he talk, but he doesn't make ANY sounds.

Except crying.

No babbling, no Mama or Dada. Nothing. So they start him off with a few therapies. He gets speech therapy (SLP), occupational therapy (OT) and a developmental specialist instruction (DSI). Each of them are one hour a week.

After a while, we don't see much progress. Just about the only words that has come out of speech is "moo" and "no". Don't get me wrong, we celebrated like crazy when we heard these words. But when more didn't come and behaviors kept getting worse, we were recommended to a developmental pediatrician.

AUTISM.

That dreaded word. A word that changes lives FOREVER. A word we've heard 4 times now.

Four.

A word you "think" you know. But what we didn't know, was that we DIDN'T know!!!

A word that would be as common in our house, as a toddler who says "no" or a child who says "why?"

Our lives were about to change. Boy, we did not anticipate the world we were now being thrust into.

It's not a bad world. It's just very very different. It's a world where you are allowed to "grieve" for the life and child you thought you'd have. Not that you love your child any less (quite the opposite, actually). But a life you had planned. A life that wasn't as unknown, or scary. Now all that lay before us was a daunting life, to say the least.

Then we did what ANY parent would do.

We grieved.

BUT, then we got to work!

More phone calls, more therapies, more Dr appointments, behavioral interventions, diets, supplements, research, research and more research. Google became our best friend and our worst enemy. Trying anything and everything we could to make their lives the best and most productive as possible. We did anything any parent would do.

We moved heaven and earth.

As any parent would...

To be continued....



-B

Bear with me

I have been wanting to start a special needs blog in addition to my own family blog. I kept telling my self "I don't have enough time" or "life is to crazy and hectic" and an extensive list of excuses...not reasons. It's weird, though, you know? I LOVE to help others with their dreadful and tedious tasks that stare them in the face. (more on that later)  I didn't have the inspiration right away. What do I write about? What will be helpful or hopeful? What would be informative as well as realistic? And the big kicker, would I be enjoyable or entertaining?

After talking to a dear friend, I decided to jump in feet first. So here I am. Open and vulnerable to public opinion. It's not anything new for me. I've often been judged over the last several years for the way I've handled our life. The way I acted or something I've said. So what's the difference now?

Nothing.

Well, that's not totally true. The difference now is hopefully I can reach more people. Help more people, and touch more people who live very similar lives. I'm no expert on things. I just have a LOT of experience in the field. I love helping those who need help, those who need words of encouragement, and those who can see they aren't alone.  So they can see that no one's life is perfect and it's ok to have bad days, weeks, or months. But know, you've just got to brush yourself off and get back in the game. For this special needs life, though it's a rough game, we can always win!

Remember, we are all walking in Holland!

I would love to hear from you any questions, comments, or ideas you may have!!

-B