Being an Advocate

Sometimes I feel I am the worst advocate for my son.

autism%20awareness_aprilI don’t openly talk about him and how he is, what he is like or who he is. (Unless it is on this blog.) But in my defense I am not one (never have been) to talk about me or mine. I cherish my family. I know who we are, how strong we are, how much love flows through and around us because we have each other. But I don’t need to talk about it with everyone and that is what I feel I am doing when, in the off chance, I actually talk about J. Then when I do talk about him it may last for a minute, at the most two, and then I’ll turn the conversation back onto the person I’m talking with, ‘how’s everything with you?’, ‘how’s the kids?’, ‘did you have a good weekend?’ etc. It’s a bad little habit. I want to be able to talk freely about J without feeling like I’m boring the person who asked or share a story about J when a group conversation leads to kiddos. I need to gain more confidence to do this, to be myself around others, to talk about my son so others gain an understanding of who he is, what he is like, the good, the bad, even the difference.

Then on the other hand, I need to stand up against the intolerance towards J. Stand up to those who appear to be afraid to talk, associate, even be around our son. They need to be called out for their actions, for they speak louder than works. If they don’t/can’t figure out how to talk and act friendly towards our son, they will be shown. Just because he doesn’t speak, doesn’t mean he does not have feelings.

I will say though that I am a closet advocate, doing everything I can think of for J that I don’t talk about much. IEP readiness, confirming goals have actually been met and coming up with new ideas. Therapies: you name it, we have researched it and/or tried it; speech, OT, PT, behavioral, ABA. We have read and researched additional ABA techniques cause even though we liked the services, we weren’t able to afford it but we are on a waiting list for a program that we hope will be better suited for us all, maybe we will get in this coming fall. This will be the first summer that we sign J up for recreational activities; baseball and hopefully swimming lessons. We are figuring out how this summer will work as daycare is no longer an option for summer care (more to come on this later). I have researched essential oils and their positive affects to improve behavior. We have discussed to med or not to med, we agree not to right now, not our cup of tea and the longer we can wait before this is a must, the better. We have started estate planning and discussing J’s future, life insurance. We continue to research for items to label our home and cars properly notifying law enforcement or emergency personnel a person with autism may be present. We try to stay up-to-date on activities taking place in our community for those with autism. And the list probably goes on, I just can’t think of everything right now.

Therefore, in 2017 I vow not to be a closet advocate alone. I will talk about my son openly, sharing all the joy I feel for him and sometimes the dismay. If you ask me about J, I will be telling you stories and not gazing over the topic for if you are asking you likely truly care. But for those of you that are asking just to be nice, you have been warned. I will stand up for J with those who are at odds or seem afraid to talk to him, I will show them how to do so. I will not hide my son, I am in awe of him and want to gush about him to everyone just like any other parents want to.

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Forget the Oscars

Forget the Oscars, these were obviously the best moves of 2017…according to Jackson. Criteria for nominees was based on sustainable laugher, vivid color and how many times each nominee was viewed.

Our first nominee only because it hasn’t come out on Blu-Ray yet is Moana. The story of a Pacific Islander girl on an adventure to find The Rock, aka Maui. Best chicken voice acting I have ever seen. J’s Rating: 10/10; sat thru the entire movie. Mom’s Rating in Glasses of Wine: 0; I enjoyed this movie immensely.

Our next nominee is Trolls. Catchy songs (love me some Justin Timberlake), bad everything else. J’s Rating: 5/10; unsure about movie concept, but loved the songs. MRIGOW: 47

Our 3rd nominee is Cars. Still one of our favorites but lagging behind the rest of the nominees . Might do better next year depending on the premiere of Cars3. J’s Rating: 7/10. MRIGOW: 26; due to burnout. Get it?

Coming in at 4th, the nominee is the Penguins. Birds make terrible secret agents but redeem themselves with bounce house. J’s Rating: 8/10. MRIGOW: How many are in a bottle?

The 5th nominee goes to Finding Nemo. Yet another reason to never to go to the dentist but the water looked so real. J’s Rating: 8/10. MRIGOW: 1 or 2, nice enjoyable movie.

Our 6th, 7th & 8th nominees go to Minions, Despicable 2 & Despicable 1 respectively. According to J, these little yellow people are the funniest thing ever. He probably already speaks Minionese but we don’t understand. J’s Rating: 9/10. MRIGOW: 4 sleeping pills

img_2790And our Best Picture goes to Finding Dory. We get it Pixar, your water looks so real. All in all though this movie is actually…what was I taking about??? J’s Rating: BEST MOVIE EVER! 100/10. MRIGOW: I can’t even manage to have a glass as I have to control & contain my child as he is literally bouncing off the walks with excitement over Dory and her friends. (I did manage to get a few pictures of him enjoying it while seated, it lasted all of 3 minutes.)

Lance is really hopeful that a Star Wars movie, any Star Wars movie, gets a nod next year.

 

 

 

 

Our Decisions

The decision has been made.

It isn’t a fair one.

One that makes my insides burn with anger for what is and what could be.

I’ve shred many tears on this decision with Lance, my mom & sister and many alone.

I am sad and upset that this is something we even have to discuss.

I know we could always change our minds, but we won’t. He won’t. I won’t.

The decision to not have any more children has been emotional.

I blame myself for how things are. My fault. If I had just been stronger.

I have guilt. Lots of it. Even doctors who tell me it isn’t not my fault, do I believe them?

J was a rough pregnancy. Prenatal depression. Three months of anti-depressants.

Would life be different if I hadn’t? But I certainly can’t go down that road again.

Lance can’t see me go through that all again. It tore him up the first time.

What if it wasn’t that though and just our genetics?

But we can’t fathom having another autistic child.

Difficult, stressful, challenging and the worrying.

I don’t understand how other folks do have more. The strength they possess isn’t human.

The strength we have now is exhausting at times. And the tiredness we feel is deep.

We do have patience beyond and courage now to face each day. And LOVE!

But there’s the consideration of what having a newborn may do for J. Regression???

But…

I want, we want, more little feet and sticky hands.

Bed time stories & firsts.

Giggles that fill our home. Hugs & kisses.

Another child to love, cause we have so much love to give.

I want J to have a brother or a sister.

A child to love him as much as we do.

A child for him to learn to love as much as he loves us.

Someone to play with, grow up with and bond with.

Someone to be there for him when we are gone.

And this alone is my greatest fear. Him being alone…

We will be starting the adoption process.

I’m excited & scared.

But looking forward to adopting a child that needs a good home.

Love from a family that will never waver and is unconditional.

I hope we can adopt sooner rather than later.

I’m happy that we have made this decision.