Working with a child with Autism, there will always be a mixture of victories and setbacks. Over the last year and a half, our experience has constantly been that every time Cannon met a goal in therapy or exceeded our expectations……his tummy would flare up again and we would lose the momentum and many times…..the skill all together. It has been an incredibly sad and frustrating thing to deal with! This has especially been true in his speech therapy. See, Cannon talks A LOT! But his language is, for the most part, not functional. His speech sounds like a script of a movie or book. That’s why it is called “scripting.” He will also resort, at times, to something called “stimming.” This is when he makes these strange sounds that have no logic or purpose (aka: vocal self-stimulation). And they can be very grating! He tends to do both of these when he is bored, anxious, and/or not feeling well. I can’t tell you how many goals he has mastered in speech, only to regress.
Anyways……a couple of months ago, all of a sudden, after one of our hospital stays…..Cannon began talking more. Prior to that you could ask him a question but you had to phrase it in the form of a yes or no question. And give him the options or he wouldn’t understand how he was supposed to respond. And even then, sometimes he would respond….sometimes he wouldn’t. You could also ask him to label anything and he could do that but he just couldn’t use it in any kind of sentence. So, you can imagine how excited we were a couple of months ago when phrases and close to full sentences began to come out of his mouth. As a matter of fact, for a few days, it was like he was lucid. He made killer eye contact with me and smiled and laughed a bunch while looking right into my eyes for extended periods of time. (A major feat for a child with Autism.) It was thrilling! I remember telling my dad that I felt like I was witnessing a miracle. And my biggest fear every night when I put him to bed was that he would wake up the next morning….his old self. And all the progress would be gone. And that did happen for the most part. I feel certain, in my “mom gut,” that his tummy played a huge roll in that. We think he was feeling so much better after the cleanout that the real potential of Cannon came through temporarily! However, there has still been great progress! He has been talking so much more. Let me give you some examples. In the mornings now, he tells me “Hi Mommy” and Townsend, “Hi Townsend.” He tells us he loves us and if we tell him this first….he will say “I love you, too.” He often asks, “Can I have a snack, please?” Or “I want to go outside.” These are actually “scripts” that he has memorized and found that they are appropriate in these particular situations. But according to our speech therapist, that is the way he will learn to speak.
Anyways, one day about a month ago, I kept hearing laughing and talking in the playroom so I snuck down the hall to see what was going on. I peeked in and saw Cannon standing behind their little grocery store stand playing with the toy cash register. There is a pretend credit card that goes with it and a place to swipe it. Townsend would pull the credit card out of the slot and hand it to Cannon. Cannon would say “Oh, thank you Townsend” and they would both crack up laughing. They did this over and over until I stepped in and said something. I asked Cannon what they were doing. He said “He’s giving it to me.” This was the most complete sentence we had ever heard him say. My mouth hit the floor and I ran to the kitchen to tell Mark. Then, of course, I cried. I was so excited! I hugged him like crazy and told him over and over how proud I was of his “great talking!” He used personal pronouns, the proper verb tense, and described the action perfectly! I was in awe!
And then over this last weekend…..another awesome sentence came out! Our neighbors have horses and the boys love to go over there and feed them carrots or an apple. Saturday, we decided to walk over so I grabbed some carrots. Mark, Cannon, and Townsend each fed the horses a couple of carrots. I did not. I am not a big fan of horse drool on my hand. Eeeeew! I didn’t say anything about not wanting to feed them…..I gave up all the carrots and just simply didn’t. As we were walking back home, I asked Cannon if he fed the horses. He said, “Yes and Mommy was shy.” Please think about that statement for a minute. He answered me, made an observation, and figured out the right feeling word to describe it all. AMAZING!!!!!!! I practically dove for my cell phone when we walked in the door, to text his speech therapist. She loves hearing these stories! Her response was that she was crying and so excited. It is wonderful to be involved with such a beautiful therapist, inside and out. Who loves our little guy and wants to hear about every victory!
We have another other piece of news that is also good but unrelated to speech. Cannon’s results are in from the test with the “crazy capsule.” And they were so unbelievable that we almost questioned them. As, you may remember from a previous post, Cannon had to swallow a special capsule with 24 rings in it and return in 5 days for an x-ray to determine where they all were. They should have been expelled by that point but the test would determine if they were and if not, where they were hung up. Amazingly enough, THEY WERE ALL GONE! AND …..there was no evidence of impaction and/or abnormal gas pattern. Cannon was taken off the 7 motility meds that he takes daily during the testing period and it has required that much to keep us from being in the hospital constantly. So, imagine our surprise that this happened! Or didn’t happen! It was wonderful! We are still having trouble with lots of headaches so life isn’t perfect. We have an appointment with his Neurologist next week. He is also having more staring spells than normal which could mean seizures and that the tapering off of his seizure meds is not going to work. And we still have one more motility test, the Barium Enema, to help us have a true picture of his motility, the degree to which his colon is stretched from multiple impactions, and to give us the tools to make a final decision about surgery. But, in our world where good news is hard to come by…….we will take good news!!!!!!!!!! Especially when it could……….maybe just maybe……mean he won’t need such a drastic surgery. We are cautiously optimistic, prayerful, and thankful …..so thankful……for all of your prayers and kind thoughts!
I was listening to the radio the other day right after we got the good news. I heard a more modern version of the old hymn “Tis So Sweet To Trust In Jesus.” The song put a smile on my face and joy in my heart! I love the lyrics to this song! My favorite lines are “Tis so sweet to trust in Jesus……Just to take him at His Word……Just to rest upon His Promise……And to know “thus saith the Lord”….. (Chorus) Jesus, Jesus….How I trust him…..How I’ve proved Him o’er and o’er …..Jesus, Jesus…..Precious Jesus…..O for grace to trust him more.” I wanted to scream “Yes!” I am so thankful for the ability to trust Him, for a God who is so amazingly worthy of such trust, and I would LOVE to find the strength to trust Him more! 🙂 Please have a listen to this beautiful song!
If you prefer a more classic presentation……listen to this link…..
If you don’t mind your hymn a little amped up and added onto………this one is for you!
I so enjoy both versions. I love both traditional and modern worship! There are just great, great elements to both. I pray that you will be spoken to by these precious lyrics and encouraged to beg for the grace to trust him more! Much love!
thats awsome and it is always amazing no matter how small or big thier victories are. We just got skylynns progress reports and they are amazing from when she started school 5 almost 6 months ago there are big changes she went from being at a developmetal age of a 1 yr old to being at a developmental age of a 2 1/2 yr old when i read that i was so excited that she made that amount of progress in a matter of months. I am glad his test came back good and we will continue praying for you guys that things keep going good for you guys
You’re right Jennifer! You have to celebrate the victories! Big or small. We have to feel like we are getting somewhere. It just helps you get up everyday and keep up the exhausting therapy schedule. I am so happy to hear of YOUR little one’s amazing progress! How encouraged you must be! It’s wonderful news! Thank you for your prayers and please know that you are in ours! Take good care!
I am so happy for you guys and the progress!
thank you so much for sharing the joys in the journey! We rejoice with you and pray for many, many more victories. The picture of the boys playing together is precious.
It is such a privilege to join your journey in a small way from across the world, and we will continue to pray for Cannon.