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Couldn’t do it without you guys… so come on over and let’s continue the journey. I have so much to tell you. 🙂
Becki
If your child could tell you this, he or she would.
This is for all the angels out there struggling every single day ~
Becki
Today on The Talk a fairly new CBS Talk Show, they continue to shine a light on Autism Awareness Month. On the show they focused on some amazing teens who have autism and are role models in their community.
One such teen, Carly Fleischmann, literally took my breath away. A hurried and very deep sob came from no where when I watched her “talk” via computer program about what life was like as a teenager with autism. I read another autism blog recently that talked about parents having PTSD (post traumatic stress disorder) and reliving the reality of this disease day in and day out. I haven’t been able to get that post out of my mind and have shared it with a few friends. I do believe that at moments like these, I relive — or recreate — the sadness and trauma that one faces when given a lifelong diagnosis of autism. And the deep, deep desire to help him reach his potential… whatever that may be.
In her blog Mom-NOS states:
“…The physical reaction to loud noises. The sleepless nights. The ceaseless anxiety. The sensory overload. The fear.
Not their children: Them. (the moms)
The diagnosis resonated – not for everyone, but for some. I watched as faces changed, as moms considered – perhaps for the first time – that their feelings and their troubles were not the cause of some personal inadequacy or weakness or inability to cope, but were instead the reasonable response of a reasonable person who had been living with unreasonable demands without reasonable support for an unreasonable length of time. I watched as they looked at each other – but YOU – so strong – so together – YOU feel this way, too?
It was a powerful moment.
I walked away thinking that it was a moment that should be shared – that there are probably many parents of autistic children who think that their pain, anxiety, and feelings of hopelessness are theirs alone, and, worse, are an indication that they are just not capable of parenting their children. So, I went home and started Googling. I landed on a page from the National Institutes of Health that lists the symptoms of Post-Traumatic Stress Disorder. The description below belongs to the NIH, but the bolding is mine; it highlights the symptoms that I heard my friends identify in themselves:
Symptoms of PTSD fall into three main categories:
1. Repeated “reliving” of the event, which disturbs day-to-day activity
2. Avoidance
3. Arousal
You also might feel a sense of guilt about the event (including “survivor guilt”), and the following symptoms, which are typical of anxiety, stress, and tension:
It’s important to note that PTSD is characterized by symptoms that persist for more than a month – and that the items I’ve highlighted here are those that have been persistent and unmitigated for my friends. Symptoms resolved within a month – those I haven’t addressed here – are considered manifestations of Acute Stress Disorder (and, no, the irony that it shares its acronym with Autism Spectrum Disorder is not lost on me).”
———————————–
For you other autism moms reading this blog, I sometimes feel this way too. I do.
What brought me to such deep tears so quickly was the fact that Carly talked so eloquently through a computer. Her thoughts and her comments were so ‘normal’. And that was her point! She said that because she may not look normal on the outside, people are quick to judge that she’s not smart. And because she can’t articulate her thoughts through the spoken language, she is often misjudged.
She is an amazing gal and I’m so intrigued with her story because she CAN communicate and tell the world just what it’s like to be in a body/mind with autism.
What would my Tony be like if he could really communicate? What would he say? What would he tell me? I would walk a thousand miles to be able to just have a conversation with him about what he’s feeling and why he gets so frustrated at times.
Maybe he could answer the one question that’s been burning on my mind since his diagnosis 16 1/2 years ago… why did this happen?
Tony 19 mos
or maybe he’d tell me that the ‘why’ just doesn’t matter…
Becki
It’s always hard for a parent to celebrate milestone birthdays with their kids — like turning 18 yrs old — because deep down, we still see them as our adorable little munchkins. It would be so wonderful to be able to scoop him up in my arms, squeeze his cheek next to mine in front of the mirror and say “Who’s so handsome?” — “Me am!” he say smiling proudly.
Except there will be no scooping up a 190 pound- 6 foot- 18-year-old this year.
Instead, I had asked Tony months ago to think about what his 18-year-birthday-wish would be. And I would try hard to make that wish come true.
Tony turned 18 yrs old on St. Patrick’s day. We’ve been talking about it for some time now, and his anxiety was climbing. He was so excited to wake up that day. He rushed into my bathroom and looked straight into the mirror saying “Bigger?” He shower, shaved, and got all dressed up in green. I love it when he understands milestones.
His wish this year was as simple as last year. He only wanted one thing. He wanted to go stay at a hotel. AND he wanted to bring Beau.
Simple, right? Well… kind of.
It took a few phone calls to find a hotel that not only accepts pets — but one that would accept our 100 pound lab! We found one not too far from our house. I booked two adjoining rooms, so Tony feel grown up and independent. I also wanted to make sure he had his own space to set up his DVD’s and books, and have his snacks, yet not be disrupted by any outside noises. It was just how he liked it. A perfect night.
Beau settled in pretty quickly — he got a little TOO comfortable, as you can see. But all in all, it was a great night. Just Tony, his dog, his family (in the next room) and his new DVD collection. And as requested, we picked up Don Pablos chips and salsa, a chicken fajita, popcorn and a gluten-free chocolate cake.
So while Tony and Beau settled into their own room to watch his new World War I, World War II, and Classic Hollywood DVDs, the rest of us were in the adjoining room watching a Harry Potter marathon. What a great way to spend a Saturday night together… well, kind of together. 🙂
Becki
We lost Tony’s Grandma Pat on Feb. 28th to what we believe was literally a broken heart. As you recall, Grandpa Gene died last September and we were so proud of how Tony handled the funeral and his death. Just five short months later, Grandpa Gene’s wife of 55 years joined him in heaven. Grandma Pat had a heart attack while attending Mass that Sunday morning. Looking back we can now see the signs that her heart was failing – in more ways than one.
It’s a beautiful story, actually. Grandma Pat had started to tell us that she was talking to Grandpa Gene. That she would dream about him, talk to him, and then finally she was “seeing” him in the living room. He had come for her. And I truly think that her heart was so lonely for him and the life they had, that she was ready to go with him.
Patricia Catherine Hanna Becker was “100% Irish” — and very proud of it! I’ll never forget the day our Tony was born. She couldn’t have been prouder. Tony (Anthony Patrick Becker) was born on St. Patrick’s Day 1993, and I believe my mother-in-law was in our room about 2 minutes after he was born bearing all things Irish. 🙂
Having just been through the funeral experience, Tony was once again a trooper. We had a private viewing for him and he was so very sad. You can see by the picture below that he had a very serious look on his face. He understood he was saying goodbye forever. We celebrated her life with a theme of green and even made sure she was wearing her shamrock socks.
Later that week, I found Tony reading this in one of his Book of Saints:
“Why a shamrock?
St. Patrick used the shamrock to explain the Trinity, and has been associated with him and the Irish since that time.
St. Patrick was a humble, pious, gentle man, whose love and total devotion to and trust in God should be a shining example to each of us. He feared nothing, not even death, so complete was his trust in God, and of the importance of his mission.”
We’ll miss you, Grandma Pat… and we promise to carry on your wishes and to ALWAYS celebrate all things IRISH!
In loving memory: Patricia Hanna Becker
April 23, 1934 – February 28, 2011
Becki
A typical conversation at bedtime:
“I’m sick for the school tomorrow,” Tony announces as I tuck his weighted blanket in on top of him.
“What about Rachel? She will miss you”, I say smiling.
“He’s sick.” (pronouns are still hard for him)
“SHE’S not sick, silly. What about Michelle? She’ll miss you too”
“He’s sick.”
“SHE’S sick”, I say —- yet again —– as I correct him.
“YES! He’s sick! Are you nuts?” (a lovely phrase he now uses at all times when he doesn’t like what I have to say. And now he’s testing my patience…)
“Well, what about Rob and Nick?”, I ask.
“Sick. And sick.”
“Hmmm… Well, then… we can’t go to see Marni tomorrow. That’s a bummer.” (Marni cuts his hair – she’s very pretty — and he loves her)
(Long pause)
“How ’bout school?” (I smile and leave the room)
(10 minutes later…)
“Mommy! Mommy! Can you hear me?” he yells as he knocks on the wall. (he only calls me Mommy when he wants something)
“Yes, Tony. What do you need?” I say loudly through the wall.
“Good night, Mommy. (pause) Mommy? Mooommmmy? Come in here now, PLEASE!”
I get out of bed and walk in his room…. “Yes?”, I sigh
“Go see Marni?” he whispers.
“Yes, Tony… We’ll see Marni tomorrow. Go to sleep now” I say shutting the door.
(5 mins later)
“Mommy? Moooommmy?” He says loudly as he knocks on the wall… again.
“GOOD NIGHT, TONY!” I say with my best patient hat on.
“Good night, Mommy!”
This continues for a bit and he finally falls asleep.
(I’m seriously considering some sleep medication… for ME!) 🙂
Becki
One of the things most parents raising kids with autism know well is the constant embarrassment or humiliation that goes with the territory.
The calls from school, the looks, the stares, the general inappropriateness of everything they do. Especially in public. Yes we’ve tried teaching them everything you did as they were growing up. The problem is that, with autism, they lose their skills. They are socially inept. And it doesn’t bother them.
But it’s hard for the parent or caregiver to take them public places and deal with the inappropriateness and the social disgrace. In the beginning, I was devastated. I’m a very social person – always have been. I thrive on being the entertainer and being entertained. I’m what they call a “High I”, for anyone who’s studied personality types. From the DISC profile, a “High I” is defined as:
| Influential(Inducement, Inspiring, Impressive, Interacting, Interesting) | Social, persuasive, friendly.Energetic, busy, optimistic, distractible.
Imaginative, focus on the new and future. Focused on people than tasks. Tell rather than ask. Ask ‘Who?’ |
What does this mean, to “check your ego at the door”? It means to get out of your own stinkin’ way. It’s not about you.
My husband and I went to a seminar back in 2003 that taught us both this concept. The seminar had nothing to do with autism, yet everything to do with how to live through it. We went to this seminar with friends thinking we were going for our business. We ended up being there for our survival. What we learned in that short weekend was nothing short of a miracle. We learned that the gifts we were given were for a larger purpose. Our natural positive attitudes and zest for life were there for a reason — so we could endure when times were so tough that we didn’t want to face another day. The ‘gift’ I think we have is that we can find humor in every situation, that we are strong in social situations, so therefore, we can overcome the awkwardness and get on to the business of teaching our son the very things he needs to survive in our socially driven world.
Am I saying that only certain people can survive raising a child with autism? No. What I’m just saying is, this is how we ‘ve managed to survive.
So last week, as I rushed to school to help in a crisis situation with Tony, I literally checked my ego at the door. I steadied my emotions, thanked the Crisis Team on the way in — who were also there to help — and proceeded to calm Tony enough so I could take him home.
It’s so not about me. Every parent will tell you that. The difference here is that I’ve had to get over caring about what everyone else thought. I’ve had to get over the humiliation and the frustration, because this is not the first time it’s happened.
And it most likely won’t be the last.
Becki
This is something that will totally intrigue my Tony. Watch and see. Pretty fascinating!
http://www.youtube.com/watch?v=h60r2HPsiuM
Becki
Today is a special day. Today Dave and I celebrate 22 years of marriage. I just wanted to take a minute to let you know about my husband, who is the silent partner of this blog.
Back in 1995 when Tony was first diagnosed, one of the professionals working on Tony’s program told us that most marriages with a special needs child, will end in divorce. It’s usually too stressful, financially devastating, and most of the time the couple will disagree on discipline strategies or therapies.
Geez… thanks for the head’s up. Any other good news?
I remember having this conversation with Dave shortly after hearing that Tony was diagnosed with PDD-NOS: Pervasive Developmental Delay-Not Otherwise Specified. (which, by the way, I could not accept as “autism” — another story at another time) Dave was the one with the level head and the one to go to the library and research the subject. I, however, cried for weeks. In fact, if my memory serves me right, I even threw a book at him that he brought home for me to read called “PDD-NOS and the Autism Spectrum”, screaming “OUR SON IS NOT AUTISTIC! HE IS NOT RAINMAN!”
Dave is the one who listens to me day in and day out with my ideas, plans, therapies, research, and frustrations. Dave is the one who encourages me to write. Dave is the one who sees me at my lowest points, yet still manages to get me to laugh.
Although these years will go down silently in our own family’s history books, what I want the world to know is that I could not have gotten through it without Dave. We make a fantastic team. Maybe that’s why we were destined to meet all those years ago — at a bar named Champps. It still amazes me how God could send me someone so perfect for this job.
Has it been easy? Of course not. No marriage is. Do we agree on everything we do for Tony? Not for a minute. Do we try to hear each other’s opinions? Most times. Do we have a long road ahead of us? Absolutely.
I think what has gotten us through these 22 years is that we surround ourselves with loving family members and close friends. We have THE best support system a couple could ever ask for. For that, we are eternally thankful.
We had no idea what was in store for us, no one ever does. But nonetheless… I’m still praying for more of the same.
Happy Anniversary honey,
Becki
As I was digging through a closet last weekend, I happened upon a large stack of notebooks that literally took my breath away. They were all from Tony’s elementary school years. One of the best communication tools we used back then was notebook that would travel with Tony to and from school. His para-professionals (or paras, as we lovingly call them) would write me detailed notes of Tony’s school day, since Tony could not communicate that with us. Back and forth it would go, filled with the good, the not-so-good and even the very bad things that happened each day.
To say that this was important to us, is an understatement. This was the only way we could have an insight as to what was happening at school and how Tony was progressing. It took patience and dedication from these awesome paras to take the time, during what I’m sure was a very hectic day, to write a note to us. I looked forward to it every day — and I always wrote back. (Now, in 2011, it’s an email or a text to his paras and teachers)
The nice thing about the notebooks is that I have a slice in time that I can look back on and remember. I always say that I have a “gift” of being able to forget the stressful times and move on. I’m sure I haven’t forgotten them, but I’m just able to put them aside and move on to our next adventure. It’s the only way I can do it. Somethings I don’t want to recall — but others I do. It’s nice to see all the progress we’ve made over the years, still knowing there’s so far yet to go.
Here’s the very first page of his 2nd grade notebook. (Keep in mind, back 10-11 years ago, autism was not in the spotlight or as common as it is now, sadly)
“Tips for Tony:
1. If watching a video, Tony likes to watch and listen to the VERY end. He will get very upset if the video is stopped — or done so without warning.
2. Tony loves the computer. It is a good calming tool.
3. A good technique for Tony is: “First _________, then _________” i.e. “First math time, then recess!”
4. Tony may need a few verbal cues before cooperating. He can not “read” social cues, but will mimic someone who is upset or happy.
5. Tony needs and seeks out big, strong hugs for approval and acceptance. Also good for calming.
6. If overstimulated or overwhelmed, Tony may lose his cool. Be firn and stay calm. He is learning to calm himself. He will feel bad about it after, and may need some physical time – i.e. swinging, jumping, running
7. Last year, they used PECS (picture exchange communication system) to help him learn his schedule. If something will be changing, just give him verbal warnings — “Today is going to be different, Tony” 🙂
Another entry — 9.22.00
“Dear Becki and David,
I want to tell you how wonderful Tony is! Every day, we are seeing progress. He is adapting to schedule changes throughout the day, answering questions with yes or no, sitting quietly in a large group, making eye contact when Mrs. J is speaking… the list goes on and on… He makes us smile all the time!
I want to commend Mrs. E. for caring for Tony so much! She is dong a wonderful job mainstreaming Tony into the regular ed. classroom. She works very hard to make each day go smoothly! Gracias, Mrs. E.!! (this is the year Tony learned to speak Spanish – Mrs. E. was bilingual) You are appreciated!!
Mrs. S.”
I believe I cried when I read that. We were struggling so hard in those early years just to get Tony to cooperate and just “be” in our world.
My wish is to find all of Tony’s paras from all his years in school (including early intervention at age 2) — 1995 – 2011 — and express my thanks to each and every one of them. We could not have made this journey without them! We know just what a little stinker our Toneman can be and we know that your job was not easy. Rewarding? yes. Easy? not for a minute.
As we come to the last few months of Tony’s high school days, I can’t help but wonder how lucky we were through the years to have such great paras. If you are reading this, and you’re one of them… God bless you. We thank you for your dedication to our Toneman.
You can see by this picture, just what a little stinker he was (and is)! Tony - 10 yrs old - 2003
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