Enhancing your Special Needs Child’s Communication…

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One of the biggest challenges for special needs families is expanding and improving their child’s communication skills. Before having a child with communication challenges, most people are unaware of how difficult even a simple conversation can be because most of us develop those skills naturally when we are toddlers.

For those who have a child with Special needs we don’t take much for granted because our child has to work extra hard to reach milestones that come naturally to most. There are some who eventually learn how to speak after years of Speech therapy and constant work. Then there are some who never do gain the ability to speak. So we must find ways to help our children communicate their wants and more importantly their needs.

For the last three years we have worked on multiple means of communication with Sawyer. We started out with a PECS (picture exchange system) binder that I put together using printable pictures a previous Occupational therapist passed along to me that can be found on Teachers Pay Teachers Here!

We soon realized that Sawyer still had issues with understanding what was expected of him and how to use the pecs binder so we decided to put it away and find other means of communicating. Our next choice was sign language. We started with some basics and it has taken a year but we now have (eat, more, please, thank you, all done & go) down. These are great gains, however; we noticed that Sawyer’s receptive language was progressing faster than his expressive language and this left him as well as us frustrated because he still couldn’t express his wants and needs with out yelling and screaming. To say we were feeling defeated is an understatement as we are always playing detective and that can be exhausting. We always have to use the “rule-out everything” method to figure out what it is that Sawyer is trying to tell us.

So recently when his teachers and therapist expressed that PECS was working at school and during his outside therapy sessions we decided it was time to reintroduce PECS at home but needed to make some changes to our original set up. So I downgraded to a smaller binder, something more portable and accessible which you can find Here. I also needed new durable dividers (a place to layout the pictures) within the binder and you can find those Here. You will of course need a means to attach the pictures and Velcro is the best option. You could use Velcro dots found Here or strips of Velcro found Here. I then started to take the pictures we currently had and replace them with more personal able pictures. Ones that Sawyer could easily relate to. I’ve been taking pictures of his toys, favorite foods and items within and outside of our home that are a part of his daily routines. This has helped tremendously! He’s starting to grab the binder and with our help TELL US what he wants (part of it is intuition-we’ve had to learn how to anticipate his wants and needs) and the rest is all Sawyer learning a new way of expressing his thoughts, wants and needs!

Progress is always our main goal never perfection. His goals and life skills are attainable with the right tools in place and we’re getting there.

IF you are reading this still and have been hesitant to set up a pecs binder for your child, reach out to me on Instagram @sawyeronthespectrum or send me an email! I’d be glad to walk you through it in more detail. It’s worth it!

A letter to my son

Sawyer,

From the moment I found out I was pregnant with you I knew you were a boy. My “mother’s intuition” has never failed me when it comes to you- not once. You’re everything a little boy should be, rough, tough and a handful!!

There’s a quote I see on the internet all the time about mother’s and their children and it goes like this “No one else will ever know the strength of my love for you. After all, you are the only one who knows what my heart sounds like from the inside.” You’ve been closer to me than anyone else in this world will ever be. I use to think your daddy was your “person” but after your almost 4 years on this earth I’m starting to see a Mama’s boy emerge from what once was a daddy’s boy and I have to say it makes my heart burst with joy. I’ve worked hard to earn your love – you didn’t give it away easily. That’s ok though it was worth the wait!!

Your life thus far has been a roller coaster ride and at times very difficult for you and (difficult for us to witness). I know in time things will be as they should, but for now I will do whatever it takes to get you WHATEVER you need!

You will be turning four in less than a month and I can’t believe the years have gotten away from us, it seems like just yesterday I was in my 30th+ hour of labor with you trying to bring you into this world. In other ways, it feels like these past four years have been a constant uphill battle. Fighting for a diagnosis so we could get your services and the intervention needed so that you wouldn’t fall years behind your peers. It’s never been easy but like I said you’re so worth it!

Your dad and I try not to have too many why Sawyer? Why us? Moments but its hard not to when all we want is the best for you , our precious son. We feel like we’ve done everything right from the beginning I just don’t understand why this happened to you. However; I’ve made it my life’s mission to advocate for you, for others on the spectrum and with delays and “other abilities.” I will be your voice for the rest of my days and I hope one day you’re able to share what it has been like for you-until then my dear son we will keep doing our best to make sure you have the best life we can give!

With ALL our love,

Mommy & Daddy

The one thing I feel differently about compared to most special needs parents..

So from the start of our journey my husband and I have both agreed on many things but one thing for certain is…IF we could take away Autism and all that is included with it from our son we would in a heart beat!!! Does that mean we don’t love our son for who he is? UM NO! It means we want more for our son- we hate seeing him struggle with every day task, or knowing what it is to socialize with his peers , play functionally with his toys, not need therapies but to just be a kid! This is just the beginning of our journey we’re only 2 years in and a lifetime to go..and although Sawyer has made SO MUCH progress between going to school and starting all of his therapies we just want him to be able to be a kid! I feel like we’ve finally found a somewhat of a “happy medium” with all of his providers and are praying that we continue to see more progress with his therapy programs. However we’ve hit a road block with his behaviors. He is almost completely non-compliant during all therapy sessions. Most of his providers feel that it is a phase and that he is finally figuring he “has a voice” and he’s saying “I DON’T WANT TO DO THIS!” I wish you didn’t have to buddy, I wish you didn’t have to.

Holidays, New Year & everything in between (part 2)

So we made it through October, November and ALMOST ALL of December without too many serious issues, meltdowns or tantrums. The Nemechek Protocol continued to show progress within reason and we spent our days preparing for the upcoming winter season. Sawyer did have surgery (to have his ear tubes removed and patches placed on the ear drums) 5 days prior to Christmas. We did have to stop one of the supplements (Omega 3 Oil) included in the Protocol a few days before the surgery due to the possibility of thinning out his blood. The surgery is relatively less invasive than most procedures and he seemed to be ok after surgery but putting him under sedation was a bit of a challenge. Sawyer (like most kids and adults on the spectrum) is VERY strong. It took the anesthesiologist, a nurse and myself to hold him down with a mask over his face to sedate him. The look he gave me I’ll never forget…it was that look of confusion and fear. I cried the entire 15 minutes he was under because I felt like a horrible mom who did this horrible thing to my child. He didn’t understand that what was happening was not to hurt him but help him (what kid his age would understand? Let alone one on the spectrum). He did have to stay in recovery a bit longer because he tried inhaling his breakfast and juice right after surgery and threw up all over mom *ME* twice…yikes. I smelt horrible! Then Christmas Day came and again for the most part everything (Holiday gatherings included) went off without a hitch. Sawyer seemed excited at the sight of all the new toys Santa had left for him and was interested in them for 2.5 seconds but spent more time with the boxes and wrapping than he did the toys (typical for a baby yes, toddler not so much) but that’s ok, at least he enjoyed himself and that is all that matters to this mama! He started to feel lousy the later part of that day and wound up on antibiotics later in the week (for safety precautions due to surgery they didn’t want to take the chance of his sinus infection OR cold turning into ear infections). I also failed to mention dad was sick before and during the week of surgery so I doubt that helped and then I fell ill the week of New Years. Even with the illness it didn’t really slow Sawyer down much but therapy schedules were disrupted AND THAT my friends made all the difference in the remainder of our Holiday break from school (it was rough!). Most of you who have children on the spectrum are all too familiar with what I am about to say. Holiday breaks from school, therapy and routines in general can really turn our world up side down! Sawyer became very behavioral (we noticed an increase in his head hitting), his stimming also increased more and sleep was a bit off due to the Full moon that took place the day following his surgery (that in itself is another topic I will elaborate more on later). We also had a death in the family and my brother deployed over seas. 😦

With all of that behind us we looked forward to the New Year! Like every New Years Eve we prayed for a quiet night at home. We spent New Year’s Day in our pjs and watched movies. We looked forward to the day that school was back in session and our routine could return to normal. I hope you all had a Merry Christmas & a Happy New Year!

Holidays, New Year & everything in between (part 1)

SO here I am again, 3 (yes I said THREE) months since my last post. Sorry life has a way of interrupting sometimes…heck who am I kidding?! ALL THE TIME! So since the last post we’ve had 4 Holidays come and pass..lets start with Halloween.

Let me first start by saying it went so much better than I hoped for or expected it to. 🙂 Sawyer dressed up as “Where’s Waldo?” And although to some his costume might have been a lousy choice it worked for him so it worked for us! It was sensory friendly and he left his beanie on the entire time we were out trick r’ treating! That was just icing on the cake. So we started in our neighborhood but quickly realized everyone was either gone to other neighborhoods getting candy or simply didn’t participate by handing out candy to the kiddos. However; one kind dad stopped us to give Sawyer some candy and much to our surprise SAWYER PICKED OUT HIS OWN CANDY…AND PUT IT IN HIS OWN BAG!!! I wish I would have videotaped that moment, yes I know to some that would sound silly but that’s a BIG (little) milestone in our world. We ended up in another neighborhood and Sawyer willingly walked like a big boy the entire 2 hours and we got plenty of candy for his first Halloween “doing it like a big boy.” His dad and I call that a success!!!

Sawyer’s specialized Candy bag with Autism friendly notes

Trick r’ treating with Mom & Dad

Mom & Sawyer Halloween 2018

Fall went by rather quickly it seems..after Halloween, Thanksgiving came and went. We went to my side of the family gathering since my husband’s family lives all over the U.S. We didn’t have to travel very far thankfully. I say that because Sawyer has never been a child who likes extended periods of time spent in the car. We ate, we spent time with family..and Sawyer actually joined in on some rough house play with his cousins and his uncle Josh. Again all in all, a successful Holiday! Quick & painless.

Sawyer, Dad & Mom Thanksgiving Day 2018

Rough House play with Uncle Josh

Me with my younger siblings & Parents

New supplements..New milestones

I know it’s been two months since our first post, I’m sorry. Life happened 🙂 We have since done some research on a Protocol that has taken off in the Autism world..our world. IT goes by the name of “The Nemechek Protocol.” I read the 12 chapter book over a weekend and immediately discussed it with my husband and we decided to move forward with it. Sawyer was on a probiotic, allergy meds (oral and nasal) we removed those from his daily routine and added in the following supplements { Organic agave inulin- which is a prebiotic, Omega 3 oil & we cook his foods with EVOO-extra virgin olive oil}. These supplements are to help any gut & brain inflammation he may have, subside and allow the brain and gut to function as intended. Once we started this we noticed a change in his bathroom habits but nothing some A&D ointment couldn’t heal. When his body finally leveled back out he showed some great improvements in many areas. His receptive language progressed greatly. He started to follow directions and responding to his name even more than before. It was like he woke up and realized we existed! Its been wonderful. He no longer needed medication to help him go to the bathroom (his constipation subsided greatly). He’s been able to tolerate going outside with minimal issues from the pollen/ outside elements without the allergy meds we removed from his daily medication regimen and has slept better overall. We hope that as the months pass with the help of his therapies he will continue to make progress in other areas that pertain to his intellectual milestones, his speech development, sensory processing, etc. I will do my best to continue to update you all on our journey with this – thanks for understanding my reasoning for being away so long!

-Rachel-

Glad you’re here!

Welcome to our always unique, totally interesting, sometimes mysterious life with Sawyer! I’m Rachel. Wife to Josh, mother to Sawyer & fur babies Levi and Rosco.  I am the proud parent of a very special child. I will never blame him, be embarrassed of him, or stop fighting for him. I have his back, he has my heart! I am starting this blog in hopes that it reaches someone going through this autism journey and that needs a daily reminder that you are doing your best and THAT is all your child would want from you! I want to raise awareness, advocate and inform those around me as well so that we can all be more understanding of those with special needs.