Autism Spectrum Disorder – Round 2

17 10 2018

Today was a day I dreaded and looked forward to with equal measure.

A day that brought relief but sorrow.

Today, my 6yo (he’ll be 7 next month) was diagnosed with Autism. He’s a level 1, which means he’s high functioning. If they still used the Asperger’s label, this is probably where he would fall.

Because he’s high functioning, it’s difficult for people to see. Without gathering all of the information, it’s very difficult. So difficult in fact, that in the last 18 months that I’ve really been pushing, we’ve had two places that deal with autism do a cursory glance and tell us they didn’t see anything. He’s verbal, doesn’t flap his hands, and he makes eye contact, which completely excluded him in their minds.

But autism is a spectrum. It’s so much more than those three things. Yes, he’s verbal, but he has difficulty expressing his needs. His conversations are one sided – there’s no reciprocity, no back and forth. So while he can tell you (in detail) about his day, he struggles to carry on a back and forth conversation about it. He has words, but lacks age appropriate communication skills. I wish they’d change “verbal” to “communication”, because communication is so much more than words. It’s body language – gestures, how we hold our bodies, facial expressions, eye contact – all things he still struggles to do and understand even though we work on it weekly. He does have repetitive hand gestures, they’re just very subtle, and he doesn’t flap. He’s usually touching things or manipulating it to form a spiral or circle pattern of some sort.

I dreaded today, because the thought of baring myself and my family, of making us vulnerable to criticism  is hard, especially after being turned away while asking for help over and over again. Along with the places that said they didn’t see anything, we went to multiple specialty clinics to rule out other things. They couldn’t help me because he checked out fine in those clinics. Their only advice was to keep doing what we were doing. That didn’t help because those things didn’t work.

But this doctor we’ve been working with, she listened. She took in the history – eye contact is “good enough to get by” so might not be noticeable to most people, but she heard us when we said it’s a skill we’ve been working on for YEARS. You guys, we’ve worked on SO MANY THINGS FOR YEARS because I KNEW there was something going on and I refused to NOT help my son just because no one would help me.

On this journey, we’ve been judged by outsiders and at times, well meaning insiders. Early on, I was the ONLY one who worried that my son wasn’t processing his world the way we expected him to. Slowly, some of the others came around. It was a hard place to be, but as the people close to me started seeing what I saw, it lightened the load.

We’ve been on a long hard road and today, we got off that road, thanks to this doctor who took in the whole picture.

It’s still going to be a long hard road, but this road has AAA insurance. I’m now in the process of assembling a team to help my child. And thanks to my 2yo’s autism diagnosis earlier this year, I have so many more connections and people mostly ready to go, which is a huge relief. They’re my AAA team 😉

I’m trying not to be angry at the wasted time. When four years ago I was saying, “hmmm, my child sees things, reacts to things differently,” if someone could have helped me then, when I started asking, then early intervention would have been amazing. But I can’t go back. I can’t change that, so I’m trying to leave it alone and focus on the positive. Today I got answers which will enable me to get help for my son so he soar within his boundaries and that’s what’s important.

So here’s what I’ve learned. Here’s what I can pass on from this journey so far.

  1. Moms, dads, if you think something is going on, FOLLOW YOUR GUT. Keep pushing for answers. Document things so when you get a chance to be in front of someone who can help, you can just hand them a piece of paper (or a note book) and say, “these are the things that worry me.” I found that trying to remember on the fly was hard. If we were in a calm time, those things didn’t come to memory so easily. If we were in the middle of a rough patch, I was venting more than sharing helpful information.

Because these behavioral clinics have months long waiting lists, I had my son on    multiple lists. If I got the help I needed, I could cancel the others. But I was wasting time waiting if the first ones didn’t provide the help needed. Which was exactly what happened in our case. Today, I’m glad to say, I was able to cancel a future appointment and open up the slot for another family who needs it.

2. Not every Viking belongs in your boat. Some Vikings may be great, but they just don’t work in your boat. And that’s okay. Find the ones that do. It’s worth it. This last doctor was my missing Viking. The place that turned us away after 10 minutes of interaction with him because they “didn’t see it” may be fantastic for another family, they just weren’t a good fit for us.

3. You need a couple of really good friends that will stop you from driving to Iowa when you realize that Viking doesn’t belong in your boat and you’re feeling hopeless and begin doubting yourself. What I learned from others, is that it’s often difficult to get a diagnosis for our high functioning kiddos. That going through multiple doctors is pretty common. Which brings me to my next point…

4. DON’T GIVE UP. You are the best advocate your child can have. You are the one who knows him (or her) best. You know their daily struggles. To be frank – this is your job. Take a breath, take a break, take time to beat on bongo drums, but don’t stop. Without you, your child can’t get the help they need. You KNOW there’s something going on, you just have to get your child in front of the right person, and that might take a couple of tries and those tries, might take a couple of years, so grab an energy drink and keep pushing forward.

 

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I Had Time to Make Some Cards – and a Mistake!

4 09 2018

I feel like I used all the things to make these 🙂

Most of the designing happened digitally in Craft Artist. Then I added those images to my Silhouette work space and cut them out. THEN I used some stamps and colored those images on the card front. Finally, I assembled them all.

Oh wait, I also used a metal die and my Evolution Advanced for one of the cards. See, I told you. I used all the things 😉

I was in a purple mood, so purple was the theme for these three cards.

First, the one I almost didn’t keep, until I played around with it a little more.

Before:

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I tried to be tricky and mask the original stamped image so I could add another behind it. But I didn’t like how it turned out. I felt like it was kind of mashed together and it was hard to tell what you were looking at and where each thing was.

Instead of scrapping it, I got out my colored pencils and played a little. If I messed it up, it wasn’t a big deal, I wasn’t planning on using this anyway. All I could see was a winning situation.

Funny thing. I liked the image after I used my pencils. Although I stamped the flowers, I printed off two layers of pretty for my Silhouette to cut out for me.

After:

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This next one I thought was kind of plain, but it turned out to be the favorite of someone else. So, yay! This card I printed and cut out two layers for the card as well as the bow. I also used my pencils to enhance the bow, because I like crazy details like that. The hello is stamped and I used a metal die to cut it out.

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This one was kind of fun. I liked the butterfly 🙂 This card just had one printed layer. I also printed and cut out a butterfly so I could pop it on and add dimension. I stamped the orchid and used my pencils to add some shading and a little extra color.

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Thanks for stopping by!

xoxo





That Time the Physical Therapist Did Her Job Too Well

4 09 2018

and now we have to say good bye.

At four months of age, our youngest started receiving physical therapy in our home through our state’s early intervention program. His muscles were so tight, we had to physically bend him to help him sit on our laps.

In the early weeks of his prenatal development, a part of his brain didn’t form quite right. When the neurologist told us about the finding on the MRI, she couldn’t tell us how or if that damage would affect him.

What we learned is that he needed help meeting EVERY milestone. Rolling. Sitting. Crawling. Walking.

Everything. We’re still working on speech.

BUT, he hit every single one, just in his own time, and not too far out of the normal range. But he was resistant  to them all. Our best guess is that the challenges are a combination of the brain abnormality and our autism diagnosis. But you can’t tell how much work it took to get him to this point because he overcame all of those challenges and most of his success is because of a WONDERFUL physical therapist.

She’s the one that first saw and noted the autism red flags. And when my son needed a break from the PT, she addressed some of those issues. She wrote letters outlining the team’s concerns over these red flags. These letters were so helpful in a number of areas, but especially in his autism diagnosis.

He’s 28 months now…she’s been part of our family for the last 24 months. For two years she showed up each week and worked with him. She explained things to me so I could help him. She found just the right mixture of concern and calm. She listened when I was worried and cheered with us when we saw progress. I think she may have been almost as eager as we were about the adoption 🙂

For two years, my son was her son for an hour a week. I couldn’t have asked for a better woman to work with him.

But now, it’s time for her to go help another little one. So I made her a dozen roses and a card as an inadequate thank you. It took a week, but it was well worth the time.

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I cut the roses out of white paper. I used ink and a water brush to watercolor the rose pieces before I put them together. What you can’t see, is that I sprayed them with glimmer mist to give them a little sparkle.

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I happen to know she likes humming birds, so I included a little tiny one on this card and used a sketch pen for the greeting.

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Thanks for stopping by.

xoxo





Autism Bag of Awesome

24 08 2018

It’s awesome, not because of what it looks like, but like most good things, what’s inside makes the difference.

My 2yo son has therapy five days a week and we’re seeing amazing results. But to meet the time demands, he has a team of therapists, not just one.

His time is split between the autism center and home. I absolutely LOVE that he can receive therapy in multiple environments. He has different needs in different environments – something we all have in common.

But one of the tricky parts of having multiple therapists and multiple locations, is how to make sure the data tracking and the tools are consistent. That’s where his notebook comes in. And that’s where this bag comes in.

Basically, the notebook stays with my kiddo, which means I’m taking it home and bringing it back to the center during the week, which I’m absolutely happy to do, but my hands are kind of full sometimes.

So I bought a bag…

And then I decorated it 🙂

Thanks for stopping by!

Xoxo





Get Well Soon Blossoms

9 08 2018

Life isn’t perfect.

Sometimes you need a get well soon card. But these are SO much better than sympathy cards, so I’m happy to do make them 🙂

I used Penny Black’s The Unfolding stamp for this. There’s masking, inking, platform stamping, watercolor blending, colored pencil work, markers, and just the tiniest bit of sparkle (which you can’t see in this picture but I wish you could).

Thanks for stopping by!

xoxo

Get Well Soon Blossoms





Color Guard Shirts!

5 08 2018

Sometimes, I do this thing. My fingers type faster than my brain processes situations. For example, when the color guard moms are talking about ordering shirts to remind the band kids to keep clear so they don’t get hit, and my fingers volunteer to help.

So my fingers volunteered me Saturday to make shirts for the color guard. There’s six kiddos on the squad and two of them are mine. I think that’s why my fingers went crazy.

But we kept it simple and it was the weekend so I had some back up for keeping kids occupied while I worked on the shirts.

Here’s what we came up with.

Thanks for stopping by!

xoxo

 





That Time I Made Some Box Cards…Again

2 08 2018

I really do love box cards, probably because I love dimension. Creating something 3D out of paper always seems like magic to me, even though it’s not new.

So, here are a couple of box cards.

This one can be found in the Silhouette Design Store and was for someone in the hospital.

Healing Wishes

This one can be found at SVG Cuts. I made it for a friend of mine who unexpectedly lost her dog last week. I had NO idea she had a thing for hummingbirds, but she does, so this was a perfect fit.

Hummingbird Box Card

Thanks for stopping by!

xoxo