autism, parenting, supportive, Uncategorized

7 Things Not To Say To An Autism Parent

I have found myself in several situations that in a conversation with people with good intentions had no idea how offensive their comments or questions were. It can be an awkward situation if you meet an autism parent and don’t know what to say. So I’ll share a few of the things I suggest not to say.

DON’T SAY:

1. He doesn’t look like he has autism. He looks normal.

Of course he looks normal. He is normal but no he’s not typical. Kids who have autism don’t have specific look to them. Just say you have a handsome son.

2. What is his special gift? What can he do? Is he like Rainman?

There is a misconception that just because you have autism that you must have special abilities. While this is true for some with autism it is not true for all of them. You could say what kind of things does your son enjoy doing?

3. What do you think caused it? Was he vaccinated?

We don’t know what caused it and neither does the medical community yet so don’t ask that. And before you ask the vaccination question you should brace yourself for a good smack on the head. I don’t believe vaccinations were the cause and if you looked into the physician that years ago said that they did cause it you’ll see that all of his research was fabricated and he lost his medical license. So again I don’t know what caused it but I can’t change it. All I can do now is do my best to get him the best therapy and support he needs to be successful.

4. Have you tried changing his diet?

Some children with autism are VERY picky eaters. In our case Noah has less than 10 foods that he will eat. So tell me more about your suggestion to only cook one meal and that that he’ll eat when he’s hungry. Yeah…no. He’d rather starve. You can try the starvation method on your own child but what I’ll do is offer new foods and encourage him to try them but I will not force him to eat new foods. I’ve learned to pick my battles.

5. My child has meltdowns too. Have you tried disciplining him or being more strict?

Please do not compare your child’s temper tantrum to an autism meltdown. These two things are not the same in the least. When my child is having a meltdown and doesn’t have the words to tell me what is wrong. He can’t tell me what I can do to help him. It is one of the most helpless feelings an autism parent has. So no I can’t try discipline. I can’t spank the autism out of him. What I can do is utilize the tools I’ve been given by his therapist to notice the signs of a meltdown coming on and try to prevent scenarios that can cause a meltdown.

6. I read this article on autism and I think you should try…

This is a tough one. I have done countless hours of research concerning autism. I actually get regular emails from organizations that are doing on going research about autism. I can assure you that I am well educated and up to date on the latest information. I am always willing to read an article with a new point of view. So in this case instead of giving your recommendations based on the article you should probably just say I read an interesting article about autism, can I share it with you?

7. I’m so sorry.

I have said this in previous posts but I’ll say it again. PLEASE don’t feel sorry for me, I don’t feel sorry for me. Most days are wonderful. Noah is a blessing. He has changed the way I see the world. I only post about our autism journey to help bring awareness not to seek your pity.

 

I hope that if you find yourself in a situation where you are talking to an autism parent that you’ll remember the things NOT to say.

~M

 

 

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autism, Uncategorized

Fears for the Future

Noah was officially diagnosed with autism when he was three. I had no idea how much my life would change with this diagnosis. It was devastating in the beginning. It was like I went through a grieving process. I was terrified about his future. We had no idea what to expect. Autism has no two kids alike. They call it a spectrum for a reason because the severity and behaviors vary from kid to kid. The things that you assumed would come naturally were now a waiting game. Sometimes I wondered if those milestones would ever happen. Having a typical kid before Noah meant that I already had my own preconceived ideas of the things he would do as he grew. Maybe it’s my own fault but I assumed he would be a lot like his brother. I assumed he would be athletic and want to play sports but he had no interest. He loved dinosaurs, animals and bugs. I assumed that he would be a little chatter box and talk non stop but instead I was thrilled to get him to say any words at all. The worries and fears that I had for Noah and his future were new territory for me.

How will he be treated by his peers? Will he be bullied? Will he ever have a best friend? Will other kids play with him on the playground or will he even acknowledge them if they approach him? Will he be able to continue to be in a traditional classroom? Will he go to prom? Will he graduate? Will he go on to college? Will he move out on his own? Will he get married? Will he have kids? The list of questions for his future could go on and on. Some days I let these questions and these worries take over my mind but recently I read a quote that helped me change the way I was thinking.

“Don’t let your fears for the future stop your joys in the present.”

It occurred to me that I’ve been letting so many of my fears get in the way of the day to day successes that we have. I’m working on just taking things day by day instead of worrying constantly about what the future holds for him.

Noah has had so many breakthroughs this year. He has learned to ask for help instead of getting frustrated and crying. He has learned to wait (2.5 mins to be exact) before he asks again for something. He has adjusted to being in a traditional classroom. He is making progress academically and has been able to learn in an environment with all typical kids around him. He has learned to look to his peers to do what they are doing if he didn’t understand the directions given by the teacher.

One of my biggest fears has always been him being bullied. We are so lucky that it is not an issue in his class. There are 3 girls in particular that go out of their way to help him. I get emotional when I think about the fact that they have taken on the job of helping him without being asked to do so. Kids can be wonderful, kind and loving little humans.

When the autism community talks about autism awareness and acceptance we want to teach everyone but I feel like adults need the most teaching. Kids model what they learn at home. I’m just happy that we have amazing kids and parents in Noah’s class that practice patience and kindness toward others that are different. They give me hope.

~M

cancer, graduation, med school, moving, parenting, Uncategorized

2017 RECAP

Well since I skipped a whole 2 years of blogging I’ve decided to do a recap of 2017 and then I’ll take on 2018 next. I can honestly say that 2017 had more ups and downs than any other year in my life. So many amazing things happened but several lows came my way too. The year ended with one devastating blow pushing it to the top of the list of worst year I’ve ever had. The year got off to a great start. In March Quinn turned two. Her personality grew just as fast as her hair did. Those crazy curls and her sweet smile  She is our little tornado princess. It’s impossible stay mad at her because of how cute she is!

In May it finally happened. Leslie finally graduated from medical school. It was such an amazing weekend full of celebrating all of her hard work. I can honestly say those 4 years were the longest years of my life!

She matched to an internal medicine residency in Warren, Michigan that would start in July. While her 4 years of medical school were over it was time for the next step. Her 3 year residency program would begin July 1st and even though.

We made the most of our summer and enjoyed time with friends and family. I would say that our favorite part of the summer was our week at the beach with my family. We had some great family pictures made. The kids LOVE the water and had so much fun playing in the sand. It was a great getaway for our family.

It wasn’t an ideal situation but the kids and I were not able to make the move with her that summer. We agreed that I would make the move to Michigan at the end of November or early December. Nathan was entering into his senior year of high school with his senior football season starting in in August. This was going to be such a big year for him and we knew that I couldn’t miss it.

We put Noah into a ABA (Autism Behavioral Analysis) Preschool full-time. He made so much progress in there summer program that we decided to pull him out of the public school blended class to be at the therapy center to help better prepare him for kindergarten. In this environment his teachers are trained to work with autistic children and could help shape and change any undesired behaviors this crucial year before kindergarten.

We had Quinn’s speech evaluated after she turned 2. They determined that she had a significant speech delay and would need speech therapy at least 2 days a week. She started speech therapy with the sweetest speech therapist. They encouraged us to have her around kids as much as possible because with Noah being very limited verbally she would benefit being in a environment with typical children to help improve her language. So she continued at her Mother’s Day Out Program twice a week.  She loved being the center of attention there and  she loved her teacher, Ms. Fiona. I think Ms Fiona just might be her favorite person ever. Being with the other children helped tremendously with her speech delay and her expressive language shot through the roof!

Nathan’s senior football season was amazing. I loved volunteering with the other Senior Moms to do things for the boys. I loved every min of watching him play. He was kicking better than ever. He kicked over 70 points for the year. They went undefeated in the regular season making them Division Champs. He was voted onto the All State Team for kicking and punting. He was Kicker of the Year for Greater Nashville Area. I could not have been prouder of the way he ended his high school football career.

I left my job the middle of November to get ready for the move to Michigan in December. I had started working at St Thomas when I was 20 years old. It was my first “real job”. I worked there while I finished school then took a night shift position in the respiratory department after I completed my degree. It was not just a place I worked. These coworkers were my family and my dearest friends. This wasn’t just a job for me because I loved what I did. I loved taking care of my patients in the ICU. I loved the challenge of taking care of the sickest patients in the hospital. To say I was sad to leave was an understatement but it was incredibly sweet of all my coworkers to make sure I knew how much I would be missed.

At the end of November with football season over we finally made the move to Michigan. The kids were excited to be in a new space and loved playing in our new backyard. There was so much to explore. They barely stayed inside for more than a few mins. Noah was able to start into a new preschool after being there for a week. I was super anxious about it but because the class only had 6 students and then there was a teacher and her assistant in the room. I still needed to set up ABA therapy but was happy to go ahead and get him started on a schedule. I had plenty to do to keep me busy around the house. When we got there Les hadn’t done much other than move her clothes into the closet and set up the TV. The house felt like a sad blank space and I needed the house to feel like home as soon as possible. I spent hours unpacking, organizing and decorating the house. Eventually I started to see a glimmer of this being home!

On November 31st I received a call that knocked the breath out of me. Nathan had been having persistent knee pain despite football being over. I scheduled an appointment with a orthopedic doctor. My dad called and said that the doctor isn’t worried about his knee his more concerned about the mass or cyst below his knee and they were sending him for a MRI. My dad is a preacher with no medical background so I called the doctors office myself. Once I was on the phone with the doctor he told me that the x-ray showed a tumor just below his knee and believed it was cancer. When I hung up I started frantically looking for flights and packing bags for myself and the kids. Booked 3 one way tickets back to Nashville for the next morning. Les dropped us off at the airport and kissed us goodbye not knowing when we’d be back in Michigan. Then there we were back in Nashville in less than 2 weeks. Nathan’s father and I sat in the waiting room of Vanderbilt Children’s Hospital with Nathan waiting for him to have multiple scans and tests. I was terrified to put it lightly. Then begins the long story of Nathan’s diagnosis and treatment and I’ll share all about that in posts to come. (The cancer in Nathan’s leg is illuminated in bright white in the picture below.)

But these last photos are of the kids together December 2017. We had no idea how Nathan would feel or how much weight he would lose once treatment began so I had a friend do a photo shoot of them together for me. I absolutely love how they turned out.

Then to round out 2017 I have a few photos from Christmas with our family.

And there it is 2017’s Recap!

~M