Tuesday, April 19, 2016

Transatlantic Tuesdays: Achieving the Impossible

#TransatlanticTuesdays is a collaboration between Maxine (in the UK) who blogs at Down in front, please, and me (in the US) - sharing our journeys in the form of letters to one another.
Links to play catch up are at the end of this post.

Dear Maxine,
Well, life has been busy for me, and I thank you once again for being patient. Now that I've gotten through one of my bigger hurdles as a blogger/writer, I can go back to the norm.
Of course, I had to reread your letter, and of course each one you write brings both a smile to my face and a new perspective to my eyes. I just love your style, lady. Your writing style, that is.
I love that you never feel like you've hit a wall, but that you are running along it and enjoying the view. This means life hasn't smacked you in the face--you're careful and make sure to watch the signs and hazards. Similar to your recent sharing of the marathon you are training for--I wish you the best of luck!
Now, you asked me this question:
I'm curious to know what was the one success any of your kids has had which has surprised you the most? Is there anything you didn't expect from any of them and then they've gone and done it and you thought 'whoa, wasn't expecting that!'
So, I made sure to blow those egg shells out of my path before I set out to tell you the most amazing story ever, and keep in mind, I have three children. They have all accomplished great things in their short lifetimes, but what I always go back to, time and again, is when my daughter learned to ride a bike, back in December of 2012.
I had just given birth to my third baby, born with a cleft palate. I was adjusting to pumping for him, using a syringe to feed him while he sucked on a pacifier, and basically doing the things that moms of newborns do--up at all hours of the night, feeling pretty frumpy, and living in survival mode.
The winter break came, and since my husband is a teacher, he also gets the 3 weeks off. Julianna had just turned 9, Blake, our other son, 6. We knew he was ready to learn to ride a bike, and talked about doing it during the break since we'd have more time to help him. Well, in reality, it would be all on my husband, since I was very busy with a newborn. So we planned to do this right after visiting with family on Christmas day.
And then Joel, my husband, posed the question to me: "Do you think we should teach Julianna, too?"
I'm embarrassed to admit that I thought Julianna wouldn't be able to learn. I told him this, and said it would probably be too hard, and not even worth trying. She lacked the coordination, balance, and muscle tone/motor skills to ride a bike. Her sensory issues, to me, would not even make it possible, and I even started looking into other options for her, like some type of tandem bike for older children. When you think about it, there are many steps to riding a bike--knowing how to push off to start riding the bike, keeping your balance on two wheels, pedaling to keep the bike going, using the handlebars to turn when needed, and stopping when needed. Too many steps usually meant too hard to learn for someone like her.
But my husband wouldn't accept that answer. "We have to try, at least!" he said.
So we removed the kids' training wheels, packed the bikes in our car, and headed to the church parking lot. I walked with my newborn in the stroller while Joel worked with the kids. By day 1, Blake had learned to ride. We expected this. He was loving his new freedom. But Julianna needed more time. Day 2, 3, 4 turned into a new week. She was making progress, but whenever she couldn't do it, and would fall down, she would get very upset, and want to give up.
Since Blake was riding independently now, Joel had Julianna all to herself. He had her go down little ramps to help her start to pedal. He held her seat. He ran with he as she rode. He did all the things a dad does when helping their child to learn. It wasn't until week 3, near the end of the winter break, that she did it. It all clicked! Her body was able to maneuver the bike and she was riding all on her own. I saw a change in her that was miraculous to me! She could do something for herself--something BIG. She felt accomplished. I'm sure I cried. To me, it was one of the best moments, and I owe it to my husband for not giving up.
Now one of our favorite things to do is go on bike rides with our family. It makes me feel like we are a normal, typical family (even though we are far from it). It gives Julianna a sense of independence that she can't have in other areas of her life (at least not yet.) And the whole experience has taught me that autism does not mean anything is off limits--EVERYTHING is worth trying! Potential is limitless, and if it doesn't work out, then that's okay, too! Trying is better than assuming something is impossible.
And so, Maxine, I turn it over to you now, and leave you with this question: 
Since you will be running a marathon this Saturday, how does this event compare to your experience as a mom?
Perhaps this will give you food for thought as you run 26.2 miles!


Transatlantic Tuesdays  |  Archive
02 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/transatlantic-tuesday-letters-from.html

Friday, April 15, 2016

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Saturday, April 2, 2016

Guest Post for World Autism Awareness Day: Derek's Story, by Nicole C.

1. What was your pregnancy and delivery like with your child? Were there any complications?

My pregnancy with Derek was uneventful. It was very similar to my pregnancy with my older son. The only thing that was notable was that he wasn’t as active as his brother. He was born 5 days before his due date via repeat cesarean after a failed induction. The induction wasn’t for any medical reasons. It just so happened that I was due the Monday after Thanksgiving, and my husband’s company was shutting down for the week of Thanksgiving. Vacation days being sparse, we asked the doctor if she would do an elective induction at 39 weeks (the Monday before Thanksgiving) so that my husband could be with me. As much as I tell myself we were doing what was best for our family at that time, I sometimes wish we had waited for him to be ready on his own.

2. When did you start noticing that something wasn't quite right with your child? How did this make you feel?

Derek was a very relaxed baby. The type of baby you would sometimes forget was in the swing or bouncer or laying under that little baby “gym” on the floor. He was quiet, happy, and just seemed to be taking in everything around him. I think having an active older brother who is only 19 months older than him allowed him to settle into that position. Most of his milestones were a little delayed (from a medical perspective), but nothing we weren’t used to, as his older brother didn’t walk or talk until between 18 and 19 months old. We became concerned shortly before his first birthday. He refused to hold his bottle or take a sippy cup. He was unable to feed himself. He raked his food up with his whole hand instead of using the pincher grasp. He wasn’t babbling the same way the kids in my mommy groups were at that age. Around 11 months old I self-referred him to our county’s early intervention program. We were already working with them for our older son, so when I voiced concerns about Derek they offered to do an evaluation.

Early intervention set him up with an occupational therapist and a feeding specialist. His feeding issues quickly became a thing of the past, as we witnessed when he stuffed his face with birthday cake at his 1st birthday party! Soon the feeding specialist was replaced with a speech therapist. He ended up walking around 16 months, but to this day (at almost 3 ½ years old) he is still mostly nonverbal.

3. When did you seek out answers for your child? How did you get them?

Early last summer, when Derek was about 2 ½ years old, I had been reading about sensory processing disorder. He avoided certain foods – fruits, vegetables, and pasta are 3 big ones that he still avoids to this day. He was uncomfortable with walking on different surfaces – it took him awhile to transition from carpet to linoleum; he avoided grass like it was hot lava. He even refused to walk on concrete for some time (even with shoes on). After doing some reading and talking to other parents, I reached out to his occupational therapist. While I had my concerns, she was the first person to flat out express that she thought Derek had autism. Her words exactly – “The thing with sensory integration is that all kids with autism have sensory processing issues but not all kids with sensory processing issues have autism.  For Derek, I see it being the first since he struggles with more than just input such as the social/engagement piece.” I remember feeling like someone had just laid me out on the floor when I read that. As parents we all know what it’s like to question things about our children, but to have someone independently express those concerns – it can be like a punch to the gut. That is when I began to actively pursue a formal evaluation.

4. What is your child's diagnosis? How did having your child receive a diagnosis make you feel as a mother?

Derek’s diagnosis is mild to moderate autism spectrum disorder. It was approximately a month or two wait from the time I scheduled his evaluation to the time he was actually seen. In that time my husband and I did a lot of observing and researching. By the time we received his diagnosis it was pretty much a foregone conclusion in our minds. Which made it easier when the doctor very bluntly told us, “well, let me just tell you, he definitely has autism. No one stims as much as he does and doesn’t have autism.” We knew a diagnosis was the gateway to getting him the help he needs. 

When I let myself be overtaken by everything, then the self-doubt begins. What could I have done differently? Was it something during my pregnancy? Was it the induction? The Pitocin? But I know I can’t be my best for him if I let these questions take over my mind. I have my pity party and move on. I have to be mentally strong to take care of him, advocate for him, and be the best mom I’m capable of being. 

5. What have you learned from your child? What do you want others to know about his/her diagnosis?

Derek has taught me patience and that looks can be deceiving. He may be nonverbal, but he sure knows how to get what he wants! And he’s smart – don’t let him fool you! He has this big, beautiful brain that’s just wired a little differently. For me, he is joy personified. His smile, his giggles, his big blue eyes . . . they give me hope. Hope that he’ll be the best person he’s capable of being, whatever that means for him. Hope for acceptance. Hope that someday he’ll understand just how much his mama loves him.

Derek is now almost 3 ½ years old. In the short time that we’ve been on this autism journey I’ve learned how much the idea of a “spectrum” really suits an autism diagnosis. Every person with this diagnosis is unique. You will never meet two the same. I’ve also come to realize that this isn’t just a learning disability or something that can be taught out of him. There is something truly different about his brain that we may never understand. 

So today, as we raise awareness and acceptance, I want people to open their minds and their hearts. Listen and observe a little more, talk a little less. When you spend time with an autistic person, you can’t expect them to enter your world. Enter THEIR world and I guarantee you, you will be amazed. Don’t pity them, appreciate them and love them for who they are. Don’t expect them to conform to your norms; take immense joy in allowing them to march to their own drummer. You will learn something new—
I know I do every day.