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I've been meaning to write this post for some time. And it's just an indication that the decision I'm making is the right one. I don't have time to blog anymore, especially with a new baby. I am still online though and regularly. If you are on Instagram or Twitter, come follow me: 2wildthingsmama. On IG I post about autism, PCOS, the new baby (Miles), and my life in general.

bgsu autism summit interview

Bowling Green State University will be holding their 12th Annual Autism Summit of Northwest Ohio on June 14, 2013. Please click HERE to register and attend! 

I had such a wonderful experience working with Anastasia Brown to help spread awareness of life with autism. This summit sounds so amazing and I am so sad to miss it but I will be in the hospital (I have a c-section scheduled a few days before). If you attend, please take pictures and/or leave comments below to tell me about your experience! I can attempt to live through you! :) 

Here is my interview with BGSU: 

Meet our cover model, Javin, and his mother, Joy.

This year BGSU is hosting the 12th Annual Autism Summit of Northwest Ohio, marking 12 years of providing information, resources, and support to educators, parents, and caregivers.  This year’s brochure featured Javin Brunnelson, a six-year-old diagnosed with autism.  He lives in Maryland, loves swimming, horseback riding, and trains.  Javin has an older sister, and a little brother due to be born any day now.  We asked Javin’s mother, Joy Brunnelson, to share some of her thoughts for parents who have a child newly diagnosed with autism.

Javin was diagnosed four years ago, and is thriving now.  When he was born, however, Joy didn’t anticipate having autism in her future. “The plan we had when Javin was a baby was the same as other parents who have children,” she said.  “We had our expectations, our hopes, our dreams for him.”   The biggest change for her has been learning to measure her happiness and successes in different ways than she planned.

Having a child with autism is different for every parent.  For Javin’s mother Joy, autism means fluidity, celebrating small milestones, and learning to communicate without words.  When Joy first heard his diagnosis, she wasn't surprised.  “I knew that he exhibited signs of autism almost a year before his diagnosis but it still takes your breath away when you hear it. The tears didn't come until hours later, which made me feel guilty...why was I crying when I had an answer and I expected it? It took me months to come to terms with the fact that even though I loved my son as he was, I needed to mourn the loss of the expected childhood and life that we all assume will come with having our children. Through the first year, I went through a whole host of emotions; I felt relief for having ‘an answer,’ I felt sadness for the uncertainty of Javin's future and my own, and I felt anxious for being in territory where I had no road map. I was ready to dig in and start researching, which I still do constantly to this day but I found myself quickly overwhelmed.”

A lot of parents feel overwhelmed when initially faced with a diagnosis. Autism is a spectrum disorder, so it isn’t always clear what you and your child will face as the years progress.  “One of the biggest challenges with autism is that it is ever changing for Javin.” Once Joy felt she had a handle on his symptoms and routines, it would change. “Unexpectedly, he started to show other symptoms and drop off the symptoms we already knew how to handle.  It ebbs and flows.”

Joy’s best advice for facing this uncertainty is to find a community or support group who understands and bolsters you.  “It is the best way to get information, it is the best way to not feel alone, and it is lifesaving. If there are support groups in your area...join them! Join Instagram and look for the hashtag #autism and begin to friend those people, follow autism blogs, follow autism pages on Facebook. My closest friends are all online, and they are Javin's biggest supporters and mine! They encourage me when I need to vent, they lift me up when I am too weary to do it alone, they cheer with me at the new milestones you learn to celebrate, and they laugh with me about the quirks that spectrum kids bring to our lives. If you can find parents in the flesh, please do so! I do have some ‘real life’ friends as well but with not always being able to make it to parties, events, play dates-- because that is just the reality of autism-- the online world has changed my life. I can post at 2 a.m. and invariably someone will be up also to lament with me at the woes of being up (again) because out his place in this world and be happy in his niche. “

She also cautions to beware of well-meaning but ultimately undermining friends and relatives.  As with any parenting, someone has advice that may or may not apply to your child, and that you may or may not want to hear.  For Joy, “We still have a family member who refuses to follow our schedules and routines when left with Javin because they want to prove that Javin is ‘just fine’ and doesn't need accommodations, leaving me to deal with the impending meltdowns. We also have the family member who constantly questions if I have Javin involved in enough therapy and they read articles about a child with autism that has greatly improved with this or that, and I am called into question as to why I am not doing the same things for Javin. And, of course, there is the family member who holds out hope that Javin will ‘outgrow’ the autism and/or will be a gifted genius/doctor/scientist and feels that sharing these hopes with me will give me hope. We even have a family member that appears to be jealous of Javin's diagnosis, feeling that he receives too much attention and wanting that attention for themselves. As Javin's mother, I just want him to be happy. I want him to carve out his place in this world and be happy in his niche. “

There are also doubts.  This is where a support group or friends who understand what you and your child face can really help. “I think all parents could say we make mistakes. I wish I hadn't been easily swayed by the opinions of others to define Javin and what his life was to become. I wish I had stood up for myself as a mother and for Javin sooner than I did. I wish I wasn't as hard as I was on Javin the first few years. I wish I hadn't believed everything I first read about autism and doubted my own abilities as Javin's mom (the person who knows him best). I wish I had asked more questions. But in the end, I stand here proud of who I am as his mother and am moved to tears in the work Javin has accomplished over the years to be the awesome (or au-some) kid that he is today.  I wouldn't change that for the world.”

Joy is extremely proud of her son. Her “biggest reward is Javin himself. He is a lovable, amazing child who has brought laughter and sunshine to our lives. Javin isn't autism. He has an awesome personality, a great sense of humor, and is one active little boy! Autism is a part of him but it doesn't define him.”

To hear more of Joy’s thoughts on autism, raising Javin, and to connect with a community of other parents of children on the autism spectrum, visit Joy’s blog at www.speakautism.blogspot.com.

-Written by Anastasia Brown
University Outreach
419-372-7872
afitzwa@bgsu.edu

http://outreach.bgsu.edu/autism2013/

30 days of autism: day 30

Funny how when he was younger he wanted nothing to do with anything related to art and now we had to create a wall-sized chalkboard because he draws constantly! 

30 days of autism: day 29

A boy and his Dad

30 days of autism: day 28

Even with the rain this kid needs his outdoor time...chalk drawing on the porch should do it! 

Someone (hint hint) has been stomping, jumping off of the steps, and yelling at the tv. Obviously the trampoline needed to make an appearance. He made Daddy @inchulk count his jumps. 

30 days of autism: day 26

He's always so happy when his sister is here!

Tackle!!!!!

I'm giving Javin more tasks lately to gain more independence. The past week he's been making peanut butter graham crackers for snack. And THIS is what I found in my silverware drawer...LOL!

I should clarify: this is what happened today when I let him do it all on his own. This knife has not been in my drawer for a week! Lol!

30 days of autism: day 25

Javin will be back to his Octonauts obsession once he sees they have a new creature chart to collect sea creatures! At least they sell the toys here now, don't have to buy from UK anymore! 

Yup, he's happily concentrating on coloring Octonauts for his book we created last year! 

If you are interested in creating the Creature Chart and collecting sea creatures, go to disneyjr.com and click on the Coloring section of Octonauts. Everything is available to print off! Have fun!

30 days of autism: day 24

This is one of the shows that Javin is currently obsessed with...Charlie & Lola. Notice how many episodes are on the list...my job as Javin's mama is to memorize each episode and know any obscure reference to each episode.

30 days of autism: day 23

So I had another post in mind for today but then THIS happened:

Umm, this is a REALLY big deal. Huge! Javin is playing with the neighborhood kids! They are playing cops and zombies. And when they all ran across the street, he sat down in our yard and waited for them to come back. I just sat in awe while I watched it all unfold. #hopefulmama 

30 days of autism: day 22

Javin is sportin' his new "Ausome" shirt! 

At the dentist!

This kid amazes me with what he can handle. Didn't know they got a new x-ray machine that spins so I couldn't prep him for it but he was a champ!!! Proud Mama!

30 days of autism: day 21

Notice how he's eating his apple? He's got two loose front teeth. He says, "the applesauce inside this apple is juicy!". Lol! On a side note, he sang the Good News song in front of the whole church today! I left my camera in the car so I couldn't take a pic or video! :( I am so proud of him! We have a special needs ministry at church and we have a "Good News Event" each year for people in the community of all abilities to come out and have a good time (moon bounces, pony rides, etc.) without fear of rejection.

Javin is playing dentist as we have a discussion about his trip to the dentist tomorrow. Always have to prep him before changes in his schedule occur. Glad @inchulk Daddy is the patient, he doesn't look too comfy! Lol!

30 days of autism: day 20

Photo by hubby: @inchulk Javin started therapeutic riding today. I missed it because I was at an autism conference but was so glad to hear he had a blast! 

30 days of autism: day 19

Oh my sweet baby! I am so proud. He won a Character Counts award for responsibility. I just always assumed (outside of those who know Javin personally) that he was invisible and today I was proved wrong. I am one happy Mama!

30 days of autism: day 18

Bug watering his radishes. "Mmm, radishes are spicy but so yummy!" 

30 days of autism: day 17

He's so unique and deliberate in everything he does. This is how he eats his cinnamon bread...around in a circle until it's gone. Hot dogs are eaten across like an ear of corn, burgers are eaten in layers: buns first then the top of the burger with the cheese (and he usually leaves about 2/3 of the burger). And everything has to be put on a fork, if he drops a piece of food, he'll pick it up with his fingers, place it on the fork, and then eat. This kid cracks me up. 

30 days of autism: day 16

This is Javin ticked at me because I told him that he cannot be outside by himself and that he needed to wait for me to finish my dinner. If this was a video you could see him kicking his legs and crying. Our night is shot. <sigh>

No one is happier than I am...he calmed himself down (playing iPad) while there was still enough daylight to play outside.

30 days of autism: day 15

"Ahhhh...those waffles made me full. Can I have more waffles?" Lol.

30 days of autism: day 14

I had a superhero-themed baby shower today and my friend who threw it for me wrapped shoe boxes to look like a skyline. We took it home and Javin is thoroughly enjoying it!

And a few other pics from the baby shower!

30 days of autism: day 13

This is one of the small things that make my day...dinner on the deck! Javin is already halfway through dinner and I haven't even put my burger on my plate yet! :) Happy Spring! 

30 days of autism: day 12

I didn't have my phone with me at the bus stop so I took this boring picture after the fact. Javin had a blast this morning counting and playing with the worms. He even touched one, squealed and found it funny when the worm would curl up so he continued to touch it. This is a big step for someone who doesn't like slimy stuff! He has always had difficulty with "stuff on his hands".

30 days of autism: day 11

Picture is fuzzy because I had to take it incognito. He will refuse to leave time-out because he isn't ready. Everything is on his terms!

30 days of autism: day 10

He doesn't have the coordination yet to pump the swing by himself but he loves being on the swings.

30 days of autism: day 9

THIS is a good 70% of my time...filling out paperwork. Good times, good times.

30 days of autism: day 8

Sunshine and warm temps make for a happy boy!

30 days of autism: day 7

We love going to the nusery. I have him touch the plants for a sensory experience (Lambs Ear is the best-soooo soft!) and Javin helps Daddy @inchulk pull the wagon full of plants for "heavy work". This engages his muscles which helps re-center him. We live and breathe therapy. 

Sat all the way in the back of the van today. "How ya doin' back there?" "What? My name is Javin. My name not 'back there'!!" Duly noted Javin. Lol! 

30 days of autism: day 6

This is our nighttime...ipad and drawing on the magnetic board. 

30 days of autism: day 5

He still looks like he's a baby when he sleeps. So sweet...then his eyes open and I gotta hit the ground running to keep up with him. 

Oh the morning we've had! I told you I'd have to hit the ground running. What a grump-a-lump I had this morning! I'm creating a folder to house some select drawings and stuff for his Kindergarten year. On the front it has the year, his teacher, and some lines for memories. It's a print-off form. So I asked him casually this morning, "who's your best friend Javin?". "No one. I don't have best friend." "Aw, why not?" "Because I don't like people. Except you. And Dad too" (heartbreaking) Then later he developed a pretend cough so that he could stay home. And then he was mad because he remembered that he is on a substitute school bus while the other one is in the shop. It's been in the shop for the past few weeks but he's still mad about it! Welcome to Friday morning.

Look what we got in the mail today! Javin was so tickled to see himself on a piece of mail! For more information on the 12th Annual Autism Summit of Northwest Ohio, please click here: http://outreach.bgsu.edu/autism2013/

30 days of autism: day 4

His face while doing homework is priceless. One of the few days he's cooperating. He's counting to 100 by ones, fives, and tens. 

30 days of autism: day 3

Morning routine...even though Javin is six, he doesn't have the capability to dress himself yet. He does, however, have strong opinions as to what he will and will not wear! I have him practice getting dressed on weekends when we aren't on a time schedule and he takes for.evvv.errrrrr!! 

30 days of autism: day 2

Boogie always doesn't feel well when a new tooth comes in. Right now it's the adult front tooth and the baby hasn't come out. It's not loose enough to pull either. I took a pic of it but my phone camera stinks and it's blurry. I asked him if his mouth hurts and he said, "yeah it feels gummy". :( 

This is the photo that I was able to get...went to the dentist's office to show it to them. They still don't want to pull it... it looks so painful to me!

Well you all know about Javin's dinner (fish nuggets) and usually for lunch he has PB&amp;J but I was out of bread so I made homemade "spaghetti-o's". He gobbled them up when I made it last week and today he doesn't touch it. Argh!! 

30 days of autism: day 1

Day 1: Javin's "well-rounded" dinner: mac-n-cheese, crackers, fish nuggets, and dried blueberries. (He gobbled up the fish and blueberries before I even sat down). This has pretty much been his dinner for the past week. He's got sneaked in pumpkin in his mac though (shhh!). He gets stuck on a food kick (right now it's the fish nuggets) and he refuses to eat anything else for awhile.

30 days of autism

Today starts the month of autism awareness. I know that many people are "aware" of autism nowadays, there has been a lot of information put out over the past few years to explain autism (which is awesome). I do my best to share experiences with my son, Javin (Boogie) on FaceBook and on my blogs (when I think of it) so that you can get a better sense of Javin as a person, not JUST autism. This month I will again do the 30 Days of Autism photos. I got a lot of positive feedback from it last year. Rather than quotes about autism or facts, I post photos each day with a background story so that you can get a better glimpse into our daily life...the good, the funny, the ugly...I show it all. This month, I celebrate Javin!

The photos will be posted on this blog as well as Facebook and Instagram. If you'd like to follow me on Instagram, you can find me as: javinsmama

(c) 2013 Joy-Jasmin Brunnelson All Rights Reserved

boogie is almost famous...

I am so excited to announce that Javin was selected to be the model for Bowling Green State University's 12th Annual Autism Summit!! Check out my sweetie (and register to go if you're in the area!) at: http://outreach.bgsu.edu/autism2013/

a ranting we will go...

Here is the article that I am so angry about:

http://www.disabilityscoop.com/2013/02/22/feds-aba-insurance/17346/


You all know that I do not post political things very often but this really ticks me off. I'm not surprised that Obama dropped the ball on this and at first I was sad and disappointed but the more I think about it, the angrier I get. THIS IS RIDICULOUS...Our community takes another hit. I mean really- first they change the DSM creating a world where there "isn't an autism epidemic" so now many kids will no longer qualify for much needed services and the Obama administration can turn their heads and pretend it doesn't exist. And now this??

You are telling me that substance abuse treatment is mandated and ABA therapy for autism is not? REALLY? We're just left to flounder on our own with no help whatsoever? I'm not asking for a handout, I'm asking for the administration to acknowledge autism as a neurological disorder (as defined by NIH) and have the already proven most effective therapy to help create a future for these kids covered by insurance.

You (Obama) don't get to change the rules based on what is convenient for you and expect not to hear from me. I am an angry mom with a son who has autism. We aren't invisible just because you choose to ignore us. I will not allow you to impress upon my son that he isn't important. That he doesn't matter. That he isn't worthy of acknowledgement based on who he is but would be if he chose to be an alcoholic instead. And then as another slap in the face, you are leaving it up to the states and pretending that it's an answer when (currently according to Autism Speaks) only 26 of them currently cover treatment for autism. So these kids can only receive help if they live in the right areas? Unbelievable.

I am so grateful for my faith in God because this world's priorities are unbelievably backwards and without my faith, I would be crushed.  You will be hearing from me Mr. President. I will be a thorn in your side.

~Joy

(c) 2013 Joy-Jasmin Brunnelson All Rights Reserved