A Mommy Moment


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A dad creates a reading app for his Autistic daughter– Parents are making milestone happen for they own kids more and more. It’s sad to me thinking that there still are hole in therapy, resources and assistance. So much so we as parent have to step up and take that task upon ourselves. But sometimes I think that’s why I was given my children. Because someone knew instead of crying at all the little things that don’t make them “normal”, I’d just laugh and smile at them. To me they are normal. This is our normal.

Props to all those parents out there who stand up and fight for their children, who create apps and materials because there are none and who love their children unconditionally.

I have a friend who shared recently one of the most heart touching insights into being the mother of a ASD child. With her permission I am gonna share it with you (grab your tissues)-

“As I lay in the bed trying to fall asleep, I find mysslf stressing over the upcoming school year. I constantly worry about C being the new kid. I worry if he will have to endure the bullying he did the last few months in Hawaii. I wonder if it’ll be worse. I’ve found myself pushing him to be “normal” often out of my own fear. I’m constantly reminding him about talking to himself, making silly faces, playing with his hands, and the list goes on. I know that many of these things are autism related but still I push him to be normal. The reality is, he is NOT normal….he’s EXCEPTIONAL! Through all his quirks, he’s the first kid to help someone. When kids bullied him, he forgave them because “God says we should forgive”. He is always respectful. He always says ma’am/sir. He’s nearly been hit by a car trying to help a lady who’s bag flew into the street. He believes he should always be a gentlemen. When I ask him why is he always Happy, his answer is “because I have a lot to be Happy about”. The fact of the matter is, he is not normal. Those qualities/traits make him better. They make him stronger. They make him a young man wise beyond his years. I challenge all parents who have a child who isn’t considered “normal” to post about your EXCEPTIONAL child. Share with the world who they are and not what some feel they should be.”

Reading again, I still cry. I often “pick” on my kids when their quirks come out in public. I have even yelled at them and put them in time out. I often forget they have ASD. It’s a hard realization to face for any parent that your child is not similar to others. I want my kids to fit in and act socially acceptable. I don’t know why I do the things that I do.

But it’s not right. I took me a while to stop stressing and getting upset over their stems. Hubs has a harder time with it still. I think men are conditioned different than women. What Hubs sees is failure. That he (Hubs) could possibly has the “bad sperm”, or wonky family history. But it doesn’t matter if science discovers its a gene passed down or a massive mutation after birth. It’s nobody’s fault. It’s only our fault if we do nothing to help our children and stop trying to understand them.

Mommy Monday Blog Hop

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Tricare and Therapy Thursday: Sometimes Kids Cry


Kids cry.  A lot.  They are learning how to negotiate the world in little bodies that don’t always do what they want them to, and with little mouths that don’t always say the words they wish they could.  Oh, and the grown-ups in charge of them don’t let them do what they want.  EVER.  Just because we’re mean and we take pleasure out of torturing little kids.  Okay, I’m obviously joking, but sometimes you have to laugh or you’ll cry yourself.  Check out this pin I found on pinterest about reasons kids cry:

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I was dying when I saw these.  Sometimes a mom just needs a good laugh to keep her sanity.  Just go to pinterest and type “reason my son is crying” into the search bar to see more 🙂

All that said, kids get frustrated a lot by things we don’t necessarily understand, but it is very real to them at the time.  This is especially true with kiddos on the autism spectrum, and even more so when they struggle with language.  All the therapy that we do with our little guys can make them very frustrated and cry because it is hard.  Therapists don’t take the time to come and work with them on the stuff that they can already do, they push them to do the things they struggle with.  Although it can be hard on us to hear our kids cry and be frustrated, sometimes that is actually the sound of them growing and learning.

I’m not saying it’s easy.  My heart breaks when my sons are crying.  But saving them from those frustrating moments now can rob them of a teachable moment or some real progress on their goals later.  When I dropped my son off at day care yesterday he was a mess because he didn’t want to wash his hands and follow the routines of the room.  I almost said just forget it, and pulled him out to take him home.  But, his therapist assured me he would be fine so I left.  About 20 minutes later, she texted me this picture of him participating in circle time, on his own.

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Mine’s the little blondie in the striped shirt ❤

Had I taken him home to make it “easier” on him, he wouldn’t have gotten the experience of calming himself and choosing to participate in an appropriate activity with his peers on his own.  Maybe it was hard on me, but letting him work through it was in his own best interest.  Giving your kids the room they need to grow is one of the hardest parts of parenting, I think, but also one of the places where you can feel the most reward.

Part 3- Treatment


It began with us driving three hours to the neatest pediatric clinic that dealt with his disease. (Here is where EFMP, Exceptional Family Member Program, can come in real handy.)

At first they had no idea on how to handle him. Because of his age he was the youngest the state had seen. They were not sure if treatment would work or what lasting side effects the treatment could pose. But there is no other option. There is no cure, just a treatment.

We started out at 7ml of Hertzina every four weeks. At this point we were now traveling three hours one way 2-3 times a week. When I say we I mean Bug and myself (I was 6 months pregnant with Diva).

His treatments lasted hours. They would admit us to same day out patient in a children’s infusion clinic. He would get doses of Benedryl and Tylenol. They would take his vital signs and we would wait for them to prepare everything. They were always afraid of a allergic reaction. So he was watched like a hawk.

Finally they would insert a iv. His treatment was called IVIG. His medication went in interveniously. All we could do was watch movies, play games and sleep. But at 18 months old he didn’t understand what was going on.

It would take 4 nurses and me to hold him down to get a iv in. Then we would cocoon him until the Benadryl would kick in and knock him out.

It is a mothers worst nightmare to see their young child hooked up to iv’s and monitors fighting against every body trying to help. I cried. Every month.

His reaction never got better. Although his health improved. It wasn’t good enough. Every third week he would end up sick and on antibiotics again. Eventually I was making those weekly trips with Bug AND a colicky Diva. Talk about wanting to run screaming out of a room. One child screaming because of fear and a incurable disease and one screaming newborn. (Hubs was in training this entire time and could never attend any doctors appointments or treatments).

After months of road trips our orders for Hawaii came through and we were on a entirely new adventure.

We landed in Hawaii and immediately had to continue on with Bugs treatments that week. But getting settled with new doctors and a new state, let alone on a island was a tough road to travel.

There is one doctor here who at the time was dealing with one other boy Bugs age with the same disease. To my knowledge they were the only two in the state (since then the other patient has moved and is in remission!). Bugs new doctor was adimant in a new treatment plan. However, the description of it was something we both felt was not in our sons best interest. We had no choice. His doctor refused to refill Bugs “prescription” for the IVIG treatment.

Our hands were tied. No longer would Bug received his IVIG every month. He would now get a new treatment every week.

Sub Q is a alternative form of treatment for this disease. The cons associated with IVIG was that at a certain point (week three for Bug) the valley would hit. The bodies antibodies levels reached a peak within the first week. Then slowly the numbers sluff off and fall into a trough causing the bodies immune system to become compromised.

With Sub Q, the body has no peaks and troughs and instead maintains a common baseline average. Although in theory Sub Q seems like the better choice, once we realize that meant inserting needles in our child weekly it scared the crap out of us.

We have now been doing Sub Q for over a year. It is still a weekly nightmare. Even though we numb the sight the fear and anxiety always sends Bug into a panic of kicking, screaming, biting and flailing. The sobs of my son breaks my heart. I will never forget his pleas he screams every week. “Mommy don’t hurt me!”, “mommy, ill do anything!” And “mommy don’t you love me?”

It’s hard, I just want him to understand why we have to so this so bad. But he doesn’t get it. Of course; why would he? To him nothing is wrong. He is hardly ever sick and doesn’t remember how it used to be because he was so young.

One day I hope he understands. And one day he will be able to do them on his own. I hope. But until then we battle on. Normally Hubs is at work and it is left to me and a volunteer to help.
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Part 2- Hypogammaglobulinemia


I decided to break this topic into two posts as to not bore you with one super long read. This is also something very important to me as it is the matter of life and death for my son. I didn’t want to leave any part of our story out in case a parent was reading this with hopes to a answer for their own child. If you didn’t read part 1, please do so before you get any further.

The nurse called us into the hallway of exam rooms. They were extremely busy that day and were running vitals in the hall before you were placed in a room. Bug had lost another two pounds over the weekend. But his cough was gone and fever was down. I thought it would be another “hi and bye”. But immediately after listening to his lungs they rushed us into the nearest exam room. There they preformed more vitals and called in a additional nurse to listen to Bugs breathing. With in minutes his doctor came in, listened to Bug and escorted us to the lab for blood draws and radiology for chest x-rays. She didn’t explain much on the way but said things weren’t normal this time.

As we sat waiting for the results of the blood tests and x-rays Hub calls. It had been the moment we had been waiting for. After two years of training I was minutes away from finding out what duty station we got.

Hub starts to tell me that I’ll never believe him when the nurse comes out to tell me Bug has full blown phenomena. I’m trying to tell Hub I need to call him back when he tells me we are moving to Hawaii. All I can do is cry. Bug barely has no fever or cough and seems otherwise his “normal” lethargic self… wait, Hawaii?

They pull us into a exam room again as his doctor starts to tell me she thinks she knows what’s wrong. Hubs is still on the line thinking I’m crying for joy about moving to paradise. So I hang up on him. Emotional overload.

Bugs doctor tells us we need to be seen by a specialist. The closets is 3 hours away. But we need to go. Now. She tells us Bugs antibodies are at 0. As in his body had no defense to fight off a common cold. Which is why we are now standing in the exam room with a diagnosed case of phenomena.

Six weeks later is when they call shocked at his bodies reaction to the test the specialist administered.

Bug was diagnosed with Hypogammaglobulinemia on March 23, 2009.

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Tomorrow I will talk about his treatments {needles!}.

Happy Fathers Day


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Some hilarious Father’s Day cards vial picks on Flipboard app.

http://www.coolmompicks.com/2013/06/funny-fathers-day-cards.php

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Happy Father’s Day to our dad followers, the single dads, the moms playing duel roles, the grandparents raising their grandchildren, the first time dads, the seasoned dads, the dads who cant be home with their families our husbands and our dads.

Our husbands are often met with challenges others do not face. They battle the challenge of acceptance. Acceptance that their children are special. Beyond special; they are amazing. The acceptance of a diagnosis is a personal challenge and struggle many dads will never have to face. Most dads have the idealistic dream that their children will be perfect and free of imperfections. It takes a strong and true man to accept what God has given him. My husband is amazing and treats our children with no soft hands or bends to the diagnosis. He treats and love them as his children. Plain and simple.

Personally my dad is amazing. But there is no shirt, keychain, card or mug that has the space or words to express the gratitude I have for him. He was the class chaperone on school field trips. He took me to sports practices, stood in rain, snow and sleet at my soccer games. He is the root of my electronics obsession. The cause of my curly hair I rebelled against for so long. I have his eyes and sarcastic sense of humor. But most importantly, I have him as my dad. He did all those things and more having been divorced from my mom when I was little. He didn’t live with us or even in the same city. But he made a point to not make distance break our relationship. Divorced dads often get a bad reputation of leaving their family behind- but I know mine is always behind me, supporting me and loving me.

Not to be forgotten is my mom. For so many years we lived together and she was there for me always. Even now I call her for advice and comfort.

Living in paradise does have it la draw backs. A phone call home isn’t as effective as a hug in person. But until we get home – Happy Father’s Day