Words, Glorious Words and a Mama in Need

Camden’s speech has really blossomed the past several weeks. Here are a few recent Facebook posts about it in case you’ve missed them:

September 21: Camden was outside playing in the dirt/construction table this afternoon. He buried the dump trunk in sand (there was a day not long ago when he would NOT have touched the sand) and then says, “Where is dump truck?” Then he removed the dirt and says, “Here it is. I found it.” Holy cannoli!! That is the most unprompted and appropriate string of language he has put together. So delighted and proud of that kid!!! Always room for HOPE!! dirt tableSeptember 23: Camden wanted to bypass school this morning and head to the trampoline park instead. Just a week ago, he would’ve pointed and said “hook” (for look). This morning on the way to school we got to the end of the street where we typically make a left…Camden pointed right and said, “Look. It’s that way.” Parents of verbally limited children typically spend a great deal of time, energy, money, resources, etc. trying to help their children find their voice. Hard to truly know what is working or helping, but when strides are made and things start to click IT FEELS SO INCREDIBLY GOOD!!!. *If you have a child whose voice you are still waiting to hear, please know it’s not my desire at all to rub your nose in it by sharing this stuff. We all ache and yearn to hear their voices, to know their hearts, to share conversation. Just wanted to share and celebrate my sweet Camdenator!

September 29: A month ago Camden’s morning request to go to the trampoline park sounded like this: “trampoline”…”bouncing.” This morning it sounds like this: “Go to trampoline park. (x20). Okay, let’s go. Have fun.” (and then a little laugh) That boy loves to amaze his mama!

September 30: Since I’ve been sharing a lot lately about Camden’s communication, I wanted to give you a glimpse into what it sounds and looks like. Here he is reading this evening. You’ll hear him get frustrated about halfway through. He was annoyed that I asked him to do this during iPad time. If you don’t have a kid with communication struggles, this probably sounds super odd. If you know what it’s like to see a little friend struggle to find their voice, you know full well how precious this is to us. (For the record, that is our old school vacuum cleaner in the background. While the rest of the world goes on and on about their Dyson, my hubs is a die-hard Kirby guy. Something about the motor yadayada.)

Camden Reading
*The book Camden’s reading came with one of his favorite video series by Preschool Prep. All of the videos have been a huge help for him. Every child is different. Camden is super visual and learns well by combining visual plus sound plus text. He started with the 4-pack of dvds that include letter sounds, colors, shapes, and numbers.

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He then turned his interest to Preschool Prep’s “Meet the Sight Words.” Each dvd has 15 sight words. Camden had them memorized at the age of 3. My husband printed off the words and put them on index cards. Camden would separate them by which dvd they appeared and then he’d put them in the order in which they appeared on the video. I struggled with him watching these since sight words are so vague (by, her, look, etc). One day I was observing Camden in his General Education PPCD class for inclusion. The teacher wrote a nine-word sentence on the white board, and my sweet boy was able to be included and participate because he knew five out of the nine words in the sentence! All because they were sight words he’d learned from the Preschool Prep dvds. I was stunned and thrilled!
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So now, for Christmas he’s getting the boxed sets of the companion books. The level 1 set:  Meet the Sight Words – Level 1 – Easy Reader Books (boxed set of 12 books) The level 2 set: Meet the Sight Words – Level 2 – Easy Reader Books (boxed set of 12 books) The level 3 set: Meet the Sight Words – Level 3 – Easy Reader Books (boxed set of 12 books) I absolutely LOVE hearing his sweet voice for extended periods of time! Hoping these books allow for more and more of that!

**Since I posted these new communication strides on FB recently, I had a very seasoned and super smart mama of a kiddo on the spectrum ask me, “What do you attribute it to?” A sweet mentor lady/retired teacher shared: “I would love to hear more about the process that you are doing. I see so much progress and I am so impressed with his vocal skills (and) also continuing through the frustration. Is there some information I can read and pass on to a dear friend who is very discouraged at this point?”

Like all kids, Camden is progressing faster than some kids and slower than others. I have friends whose ASD children are Camden’s age and are now recovered/lost their AU diagnosis/indistinguishable from their peers. Some parents try a new treatment, therapy, or protocol and things just seem to rapidly click with those kids. Some children are super slow to respond. I’ll share a few things that I feel are challenges for us, and some of the things that may be helping Camden be successful. I say “may”, because we don’t really know for sure what is working. Currently, Camden has been without our amazing private speech therapist for about four months. We’ve also cut back one of the supplements (simply because of cost and to see how he does) that has been good for him. Logically, one would think he’d blossom when those things are in place, as opposed to when they are removed. Also, it’s VERY important to remember that what you see on Facebook or blogs isn’t the whole story…by a long shot. We have a lot of struggles. I may allude to them, but probably won’t highlight them on social media at this point.

Challenges (from my limited perspective):

  1. We don’t have an unlimited amount of finances.
  2. We don’t have family easily accessible for day-to-day support.
  3. I am not Science-minded. The DSM-V talks about the three main aspects of autism as communication deficit, social deficit, and stereotypical/repetitive behaviors. There are quite often co-existing conditions  such as epilepsy, GI issues, insomnia, self-injurious behaviors, that can have a major impact on those with ASD. I have friends that can explain methylation, mitochondrial dysfunction, leaky gut, MTHFR mutations, etc in their sleep. My mind does not work like that. I read. I consult wise people. But I’m not a science-y gal, and certainly cannot retain the info.
  4. We are pretty conservative in treatment options, so it’s quite possible that we may be missing something that would be helpful for Camden.

Things Camden has going for him (from my limited perspective):

  1. We worship a big God.
  2. We have some genuine people pleading to God for Camden’s health.
  3. Great teachers and therapists who work with us as a team. Resources may be limited, but we do what we can to get him with some really amazing and qualified folks.
  4. Access to good food. Camden’s digestive system was a WRECK before he went gluten-free, casein-free, dye-free, and started organic, pastured, nutritious foods. With his gut issues better under control, the kid has also been sleeping (after six years of horrid sleep).
  5. His age. The teacher friend that asked me about our process for Camden’s growth and speech is thinking about a her little ASD friend that is four. Even for neuro-typical kids, two years is a big difference. Just heard about a special needs mama in our neck of the woods whose child did not speak until the age of 8. Can you even imagine her excitement?!?!
  6. My husband’s schedule and involvement with our family. Brian started working from home a month ago, but before that he’d leave the house early so that he could be home by 4:30 to help out and be the dad. He does everything with us, enjoys being with us, and I think that is huge.
  7. We have a physician (and his amazing wife) on our team that guide us to the next steps in Camden’s overall health and wellness.
  8. I’ve learned to write grants and look for organizations that love to give financially to families like ours. I used to whine that we didn’t have money for xyz. Now I know that it never hurts to ask. And many of the organizations that give to families like ours, are super encouraged to see Camden’s progress.
  9. Camden is pretty mild-mannered. Not to say that he doesn’t have melt-downs or get whiney, but they typically don’t last long. I think this helps him to be teachable.
  10. I’m super analytical. I study Camden and try to find out what works or doesn’t. Our district uses ABLLS for kiddos like Camden to track progress and formulate a plan. Since that is the standard for our district, then I made sure that I had access to that documentation as well. Camden’s teacher sends home a daily communication log, monthly scatter-plots, and his ABLLS data. I go through that data with a fine-toothed comb.
  11. I was an elementary teacher. While I’m not a science girl, I do have the heart of a teacher.
  12. Hubby and I are both pretty steady folks. I think it’s beneficial to Camden. And he has a neuro-typical little brother that helps balance us.
  13. He has a little brother. While Camden is excelling in some areas, the social area is super duper hard and lacking. My little guys love each other, and I try to facilitate plenty of opportunities for them to make sweet memories together.
  14. I try to hone in on how he learns. The kid does well with a combination of music, text, and pictures. For example, we have our family devotional time in the evenings. We put in a praise and worship dvd. Camden gets the beat of the music, the sound of the words being sung, and gets to see the lyrics across the bottom of the screen. I used to (still do, actually) get tired of the same dvd or ipad clip over and over and over and over, but I really think he studies it until the images are embedded in his mind.
  15. Last, but certainly not least, he’s just a really cool cat!

Camden’s teachers, therapists, family, church volunteers, etc. work really hard to help Camden be successful. His mama and daddy love and know him best. Every now and then, various scenarios run through my head about what would happen if I got sick or terminally ill, but I just can’t let my mind stay there too long. Until…stories like this pop up. It’s a story about the mother of a child with severe autism. This mama is suffering from spine and liver cancer after beating breast and bone cancer. I’m just going to paste the story below (taken directly from the previous link at Thinking Moms Revolution). This mom, Melanie, is a huge encourager in my neck-of-the-world. She also loves Jesus, and blogs about the some of the struggles of how to do church/community with an ASD kiddo.  Anyway, I really ache for Melanie and her family. If she comes to mind, please pray for her and her crew. If you’d like to give to her cause, the link is below.

Urgent Help Needed: The Financial Impact of Cancer and Autism Under One Roof

Booty KickerThe Thinking Moms’ Revolution is reeling.  Our very own Melanie Baldwin, AKA Booty Kicker (B.K.), now suffers with spine and liver cancer after having beaten breast cancer and bone cancer.

Melanie is an amazing woman who has changed the face of the autism and cancer cultures by telling her story to thousands as “Booty Kicker” in the Thinking Moms’ Revolution’s book Autism Beyond the Spectrum.  For anyone who knows Melanie through Facebook, two words come to mind. “Faithful” and “Godly.” For those of us at TMR who know her on a more intimate level we may use use the words hilarious, witty, kind, loving, patient, and steadfast.  She is the voice of reason, and sometimes opposition, but always with a clear focus in mind.  She makes us all better people.

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As Melanie struggles to overcome her current situation with cancer, her severely affected son Luke, still requires 24/7 care and attention as he is self-injurious and quite ill, suffering the lingering effects of severe autism. Please consider donating generously to help her family care for Luke as Melanie regains her health, and please help their family establish financial security that will help them thrive during her absence.

Please visit the GiveForward site set up for the Baldwin family here

If you have not, you must read the blogs written by Melanie, our B. K.  Her Autism and the Church series found here, here and here is truly exceptional.  She is touching so many lives. Read.  You won’t be disappointed.

~The Thinking Moms’ Revolution

There are specific things that I believe have helped Camden with communication. I’ll share some of those in the near future. Obviously, ever child (even ASD child) is different. I can just share what has worked for us.

 

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4 thoughts on “Words, Glorious Words and a Mama in Need

  1. Sheaffer October 2, 2014 / 5:43 am

    Candace! This was such an amazing post! Loved reading every word of it. I am SO IMPRESSED with the strides Camden is making right now. GO CAMDEN!

    • admin October 2, 2014 / 7:32 am

      Thanks so much for your ongoing cheerleading for our family! =) Smiled at the thought of you this morning…Camden woke up at 4. When he came down for breakfast, I thought he might be a little grumpy. Nope! He came down carrying the blardigan in one hand and his John Deere catalog in the other. All good.

  2. Beka October 2, 2014 / 12:30 pm

    Loved your #1 in things Camden has going for him. Made me want to cry, so true, so true. Loved the rest of your lists too, good good stuff. Great post!! Loved reading all this. Will add Melanie to our prayer list for sure.

    • admin October 2, 2014 / 3:17 pm

      Thank you, Encourager Beka! =) So appreciate you! And thank you BIG for the prayers for Melanie!!

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