And Other Chronicles of Our Life with Autism
And So It Begins...
So I mentioned in my introduction that Charlie just started talking. Yes, Charlie is four and a half. But that is the number one red flag for autism. There can be various reasons for a child not speaking. And for Charlie it is pretty unusual, because he is social, and he communicates so well with his gestures and actions. Usually an underlying cause of non-speech is a lack of intent to communicate. But Charlie just never spoke, he never imitated sounds, he never imitated actions... there are a great number off those "never's," that as a first time mom I just didn't know about! It turns out that Charlie has severe apraxia of speech, a difficulty in the motor planning of speech. His mind may want to say something, but the mouth actually forming the syllables is another story! It's all very fascinating really, when you're in it as deeply as us parents are, but I can imagine that I've lost most of you right about now with my rambling. So I'll just say this, when as a mother, you lay awake at night wondering how your child is going to be without you one day next week and how will he tell someone he's cold or he's thirsty, or if you will ever hear the word "Mom," or those little words, "I love you," to have this day, this past November, is one of those days that I will never in my life forget! I may not have those images from my dreams, of his first words when he was one, or the picture perfect image of his first day of school, but I will cherish this day for the rest of my life. This is the day this speech therapist (from now on referred to as "The Kid-Whisperer!") helped my son talk! And I could never have imagined how moved, how thrilled, how blessed I would have felt!
Charlie is Talking!!!
So what has happened since November? Well, it's a very long, slow process. But it is progress. Charlie's teacher at his special pre-school says she strongly believes that no child ever skips a phase. So we are going through everything that probably everyone else's one year old goes through. In fact, Lisa and I can compare a lot. And I see Lisa's Luke doing some of the same things Charlie is trying. Constant babbling, sticking on one known word, experimenting with sounds, experimenting with mouthing!! Yikes! I never even had to baby-proof! But I am thrilled. It's still like pulling teeth to get any words, but now my faith has strengthened... they are in there!!! Charlie will talk!
And It Continues...
One of my hopes in talking to everyone is to share Charlie's progress. It's an awful thing when you get the diagnosis of autism. (I may be playing this out differently in my head, so please excuse my interpretation) the doctor says, "Sit down please," with a somber look on her face, and continues, "So your son has autism... Good luck with that... let us know how it goes for you!" And you're left sitting there, jaw on the floor, a head full of misconceptions and uninformed stereotypes, and zero answers. You ask how, no answers. You ask when, no answers. You ask why, no answers. You ask, what now, and you get a few vague, "do this and that's," with no guarantee of outcomes. You wonder, will my boy ever walk, will my boy ever look at me, will my boy hug me, will my boy play with other children, will my child know a relationship, will my child go to school, will my child speak! There are thousands of questions! And the part that used to get me on my feet in the middle of my sleepless nights was while watching infomercials, why on earth have scientists devoted so much time, effort and medical attention to male pattern baldness and no one has figured out autism?! I mean seriously!! (This is particularly funny to my friends who know that I have a thing for bald men! Shave your heads already, it's darn sexy! And let's get back to the medical needs at hand!)
Well, in all seriousness, you come to terms with the unanswered questions, over time. Lots of time. And you work, and you learn to accept, and you learn to love this life, all of it. But you never know. You hear, "There are no crystal balls." You hear everything from the false hopes, that I've mentioned before, and you clear out your kitchen, your make-up, the play-doh, and you convert your family. Then you hear of genius therapies, some of which may turn out to be miraculous. But you keep plugging away. And our children work harder than any of us. Then they show little sparks, or huge leaps, and maybe some plateaus, where you wonder what has stalled everything. And through all of it, we parents keep our faith. We believe. We believe in our children and everything that they are capable of. Our children, without limits of expectation. I believe that this is the most important part!
So I want to share, through this little website we've started, our story, Charlie's hard work and the gifts of the people we've found in our new life. I think all of it is inspiring and maybe someone out there will see that you can't give up. There are other stories out there like Charlie's, I just don't think that they are heard enough. So I will keep posting (though sometimes a little late, I am sorry!) Charlie's progress, I hope you see it.
Charlie in speech therapy with Tamar on November 6th, 2009
Charlie in speech therapy with Beth on November 19th, 2009
If you are a parent or therapist interested in seeing the full session with Charlie and Beth on November 19th, click here for part 1 and for part 2, (2 ten minute clips). And another session on November 24th, part 1 and part 2, (2 ten minute clips).
Stay tuned...
Stay tuned...
Charlie in speech therapy with Beth on December 3, 2009
If you are a parent or therapist or you are interested in viewing the full session with Charlie and Beth on December 3rd, 2009, click here for part 1 (10 minutes) and part 2 (10 minutes).
This is a clip of the Speech Therapy session of Charlie with his therapist Beth on December 10, 2009. This is about 2 months after starting with Beth. It is a slow process, but the progress is definitely there!
Charlie in speech therapy with Beth on December 10, 2009
Charlie in speech therapy with Beth on December 24, 2009
If you are a parent or therapist or you wish to view the entire session with Charlie and Beth on December 24th, in two ten-minute clips, click here for part 1 and here for part 2.
Charlie keeps working in 2010. Is this his year?!
Charlie started off the year with a good session. The m.o. for this one? Repeat. Repeat. Repeat.
Charlie in speech therapy with Beth on January 14, 2010
If you are a parent or therapist or you wish to view the entire session with Charlie and Beth on January 14th, in two ten-minute clips, click here for part 1 and here for part 2.
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Signing = Motor Planning. Say what I say. Do what I do. Repeat. Repeat. Repeat.
Sometimes it seems like a slow process, but Charlie is increasing his repertoire of words everyday and learning signs to go with them. There is a connection that I find difficult to explain, between gross-motor skills and talking. I think it has to do with areas of the brain. Whatever it is, it's fascinating how it goes hand in hand. Do you ever notice that typically developing children start to really move around, walk, climb, fall down, at the same time as their speech starts? There is a reason for that. And generally kids on the spectrum also need physical therapy. Well, Beth uses the combination of gross-motor planning and talking to "fire" Charlie's brain. Watch this in Charlie's therapy session on February 1st.
Charlie's speech therapy with Beth on February 1st, 2010
Somethings parents just take for granted.
I've mentioned this before. And until you have to deal with it yourself, it never crosses your mind. I watch my friends with "typical" children, and certain things just "happen." Did you ever notice when your little baby started pointing at things? It just happened, and it was the intention to communicate to you. Did you ever have to prompt your child through the steps of answering you, a question, or a response to their own name? Those are the things that parents of autism cannot take for granted. We work hard to achieve a lot of little things that never cross the minds of our typical parent counterparts. Just knowing that, and wondering how it feels to look at those parents and think, "Wow, that's different," reminds me not to take anything else that we have for granted. We have so much, and I appreciate everything.
In therapy with his "Kid-Whisperer" speech pathologist, Beth, on February 11th, Charlie is learning how to answer questions. Many kids with autism do not know to answer to their name or to a question. This all has to be learned. If they can speak, maybe they might echo the question or the last word. Something else to be learned. All this means is that Charlie is moving forward! Yay!!
A Small Stuttering... er, uh... Stumbling Block on the way to Talking
Every once in a while we are going to come across a stumbling block while we are trying to accomplish something. Charlie has hit a very small one in his speech session with Beth on February 18th. He is stuck on his favorite word, "Cookie." You can hear he stutters over it, stuck on the first syllable. Again Beth uses motor-skills to push Charlie over it. There aren't so many food reinforcers today, Charlie has to "fire" his brain!
Charlie's Talking Continues with Our "Kid-Whisperer" February 25th
Get This Child Some Junkfood! He's Talking!
If you are interested in seeing the full therapy session in three 7-minute parts, click here for part 1, here for part 2, and here for part 3.
How Far Charlie's Come! Brilliance continues!
Stay tuned for Going on Six Months...
Signing = Motor Planning. Say what I say. Do what I do. Repeat. Repeat. Repeat.
Sometimes it seems like a slow process, but Charlie is increasing his repertoire of words everyday and learning signs to go with them. There is a connection that I find difficult to explain, between gross-motor skills and talking. I think it has to do with areas of the brain. Whatever it is, it's fascinating how it goes hand in hand. Do you ever notice that typically developing children start to really move around, walk, climb, fall down, at the same time as their speech starts? There is a reason for that. And generally kids on the spectrum also need physical therapy. Well, Beth uses the combination of gross-motor planning and talking to "fire" Charlie's brain. Watch this in Charlie's therapy session on February 1st.
Charlie's speech therapy with Beth on February 1st, 2010
If you would like to see the full therapy session on February 1st, click here for part 1 (10 minutes), for part 2 (6 minutes), and part 3 (6 minutes).
Somethings parents just take for granted.
I've mentioned this before. And until you have to deal with it yourself, it never crosses your mind. I watch my friends with "typical" children, and certain things just "happen." Did you ever notice when your little baby started pointing at things? It just happened, and it was the intention to communicate to you. Did you ever have to prompt your child through the steps of answering you, a question, or a response to their own name? Those are the things that parents of autism cannot take for granted. We work hard to achieve a lot of little things that never cross the minds of our typical parent counterparts. Just knowing that, and wondering how it feels to look at those parents and think, "Wow, that's different," reminds me not to take anything else that we have for granted. We have so much, and I appreciate everything.
In therapy with his "Kid-Whisperer" speech pathologist, Beth, on February 11th, Charlie is learning how to answer questions. Many kids with autism do not know to answer to their name or to a question. This all has to be learned. If they can speak, maybe they might echo the question or the last word. Something else to be learned. All this means is that Charlie is moving forward! Yay!!
Charlie's speech therapy with Beth on February 11th, 2010
A Small Stuttering... er, uh... Stumbling Block on the way to Talking
Every once in a while we are going to come across a stumbling block while we are trying to accomplish something. Charlie has hit a very small one in his speech session with Beth on February 18th. He is stuck on his favorite word, "Cookie." You can hear he stutters over it, stuck on the first syllable. Again Beth uses motor-skills to push Charlie over it. There aren't so many food reinforcers today, Charlie has to "fire" his brain!
Charlie in speech with Beth on February 18th, 2010
If you are interested in watching the full session in three clips, click here for part 1 (8 minutes), part 2 (8 minutes), and part 3 (6 minutes).
Charlie's Talking Continues with Our "Kid-Whisperer" February 25th
Charlie in speech with Beth on February 25th, 2010
If you are interested in watching the full session in two nine-minute clips, click here for part 1 and here for part 2.
Get This Child Some Junkfood! He's Talking!
When you have a baby, you have all these ideas and ideals. One of mine was to only have whole organic foods, no processed foods, and I'll home-make everything. Well, then life happens, as I say, and reality forces you to compromise. I still aim for that, I try to cook everything, when I'm not absolutely falling over exhausted, I buy organic when it "counts," and no junk food. I just found out last week that Charlie's Dad gave him a Ding-Dong, and my skin still crawls as I type this! But then there is speech therapy! And if you can get a non-verbal child to talk in exchange for some fritos, it's All-you-can-eat, Baby!! Let's get him fritos, doritoes, dum-dums, and candy! MY CHILD IS TALKING!
Charlie in speech therapy March 4th, 2010
If you are interested in seeing the full therapy session in three 7-minute parts, click here for part 1, here for part 2, and here for part 3.
Charlie in speech therapy March 11th, 2010
If you are interested in seeing the full therapy session in three parts, click here for part 1 (7 minutes), here for part 2 (10 minutes), and here for part 3 (4 minutes).
Charlie in speech therapy with Tamar March 17th, 2010
How Far Charlie's Come! Brilliance continues!
When I think of how far Charlie has come, not even just in the five and a half months since he started seeing Beth for speech therapy, but overall, I'm astounded! Charlie was delayed in everything. He never crawled, he walked late, at about 20 months old. Then he couldn't make the transition from floor to carpet, he hated mats of any kind. He never climbed. He had poor motor-planning. He never imitated. He didn't copy sounds or actions. On October 1st of last year, we got in for an evaluation with Beth. And not even six months later, look at him go! To me, this is brilliance!!!
Charlie in speech therapy with Beth March 18th, 2010
If you are a parent or therapist or you are interested in seeing the full session on March 18th, click here for part 1 (9 minutes), here for part 2 (10 minutes), and here for part 3 (7 minutes).
Stay tuned for Going on Six Months...
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ReplyDeleteKris & Charlie - You are an inspiration to me! Your dedication and hard work is pay off. Hearing Charlie's voice for the first time took my breath away. I know this journey isn't easy, but remember that your loved ones are always here cheering you! Auntie Lisa is so proud of you, Charlie!!! And Kris - you are my mommy hero. :)
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