It's only a season...

Many times in life my father has told me, "It's only a season." He said this as a teen when I was sad over a boy. He said this when I was in college and stressed out over homework and grades. He said this when I moved to Arizona on a whim in my early 20's and changed my mind. He said this when I was indecisive over changing college majors. He said this when my son was diagnosed with autism and again when my daughter was. He said this many times over the years when I experienced difficult times in life, money, family and other troubles. 

Great advice that I didn't always receive well. There were moments when it angered me as much as the phrases, "God only gives you what you can handle," "it's all relative" or "it could be worse." 

I had a moment today on my drive home where for the first time in my almost 39 years where I said this phrase to myself. This has been a tough week at our house. We received some news about our children's progress and placement change. We have had some financial issues that require attention and a few more things that make the phrase, "when it rains it pours" sadly applicable. 

I am sad. My husband is sad. I have been crying off and on for a few days now. I need this down time. I deserve this down time. I never truly grieved when our children were diagnosed. I was upset, but was immediately hoisted into the drivers seat to blaze our trail. I did it with gusto and don't have any regrets, but now is a time when I (we) need to regroup. 

We didn't chose autism, but we made the decision to take on the therapies, driving and all the effort it takes to ensure the best for our children. We could settle for less as it would be so much easier, but that has never been an option for my husband and I. We will drive anywhere and jump through any hoops necessary if it helps our children. I am not willing to put effort into therapies, schools or strategies that don't yield success, but this next phase in life is a good option. It is just change that has an enormous impact on every aspect of our lives.  I am sad my son needs to take a step back to maximize his learning, but it is okay. I want him to be as strong and happy as he can no matter where that level is. As for my daughter, this is a good change for her as well. I am grateful for a program that can meet both of their needs and individualize strategies to cater to each of their strengths. 

This change is going to present some huge challenges and I doubt I am done crying. This will be a test for our family. I guess I need to remember those words my father will certainly say when I tell him what is going on, "It's only a season." Maybe I should do my best to shift my emotion from sadness and frustration to relief and perhaps happiness if we weather the storm when it is over. 

I think it may be time for me to try and embrace the concept I have heard a million times, "It is only a season." This is just a shift, not a big move. I don't need to be the annoying voice saying, "there is always a silver lining," but I think it is time to look at this as a "season". I don't know if I need my umbrella or snow boots, but I am in. Totally and completely in. Let the adventure begin! 

How do you measure progress?

How do you measure progress? How do you quantify success?

To even obtain a diagnosis you have to go through a great deal of evaluations and measures of performance. It just is what it is and we need to go through this to get services much of the time. It is an overwhelming process that can make one feel as though they are swimming upstream in a sea of chaos. Test scores, ranges of average, eligible scores, etc. The list goes on and on and the numbers can make your head spin.

I am a special education teacher and I am immersed in evaluations and outcome measures all day long. Refer, test, report, repeat. Great families, amazing kids and wonderful co-workers.  That is my teacher hat and I love it!

At home, when I put on my autism mommy sombrero things look a little different. I am on the opposite side of the table listening to others quantify success and measure progress with test scores. Both of the kids go through an annual testing process that involves many standardized checklists and evaluations. In addition, every 90 days the team meets to go over the Individual Treatment Plan where we review progress and add/adjust outcomes. It is nice that I have a say in what is worked on and this breaks down to many hours spent in meetings. It is NEVER stressful and I am grateful that I have a voice in the plan and that they help us make sure we have some maintenance and generalization at home.

I was never surprised by either of my children's autism diagnosis. I knew it in my gut long before the reports were written. On the other hand, I will never forget the first time a psychologist explained to me that not only does my son have an autism spectrum disorder (299.00 in the DSM), but also the axis II diagnosis of mental retardation (318.00 in the DSM). I immediately burst in to tears and told them to continue as I wiped my eyes. It wasn't his delivery, he was just doing his job. I wasn't even surprised. It just stings...

After 9 years of these evaluations, diagnostic criteria, measures of skills met and age levels of performance, I really don't care. I am not woe as me in my corner focused on the news delivered. I am not shaken up by the fact that my 8 year old has the verbal skills of an infant or that my 12 year old writes like a preschooler. Neither one is toilet trained and frankly they are both very globally delayed.

We look at progress differently. It is not all about numbers.

My daughter uses a Dynavox to talk now. One of my favorite memories was when she used her "words" (this is what we call her Dynavox) at the pediatrician's office. When the doctor came in to say "hi" and I told her to say "hi" back, she didn't push the "hello" button. Instead, she hit the "goodbye" button and pushed him away. She did not want to be there and she made sure we knew that. The two of us laughed and appreciated her sassiness. That's my girl!

My son has become so good at requesting items that he can string together 5-7 words to ask for McDonald's or a cookie. This was a child who couldn't do anything but use the sign for "more" at the age of 3. He can now say, "I want McDonalds." We will say "no" and he will say, "I want yellow McDonalds please." We still say "no" and he says, "I want more yellow McDonalds fries please." At this point we often cave. Way to go buddy!

I understand that we need the numbers to get services and to maintain funding and that is fine. I am not sad, they are always better than the year before and that is grand.

Our normal measures progress in smiles and laughter and we have an abundance of that in our household. Life is pretty good. Celebrate the little things...

I'M MAYOR OF THIS TOWN!

"I'M MAYOR OF THIS TOWN!"

I will never forget the first time those words came out of my mouth. It was about 4 years ago when we were doing at home ABA with Little pants and I was having a disagreement with our lead therapist over finding some balance with ABA and keeping her in the ECSE placement part time. I was confident that she needed both and they could be successful as long as I was facilitating the communication between the two and making sure they supplemented one another. The school was ready to serve and was recommending more days of class. The lead ABA therapist was hell bent on only participating in their programming. Both sides forgot that we still had private occupational and speech therapy, but both sides were truly rooting for my daughter. They just forgot that sometimes there is more than one party involved. As a teacher, I see this happen a lot. No one side is bad. It just boils down to philosophical differences.

"I AM MAYOR OF THIS TOWN!" I screamed over the phone to the lead therapist when I was explaining why this was the road we WERE in fact going to take. Seriously, was I going to listen to someone question my parenting choices and tell me how to educate and treat my child's autism? Was I going to listen to this head strong therapist, who wasn't even a parent (nevertheless a parent of a child with autism), tell me that maybe my parenting styles just don't match my child's needs?

Hell no! I AM MAYOR OF THIS TOWN!

To make this long story short, I took the issue to the clinical supervisors who were happy to listen to how I wanted to do things and at the end of the day we kept Little pants in her school program. Her ECSE teacher and speech therapist came to my house to observe therapy (and brought me a Starbucks!). Both sides were curious of what the other was teaching and at the end of the day it worked out. I only kept her in ECSE programming for a couple years and I have no regrets. We now have a combination of ABA, speech therapy, occupational therapy and education all in one through the ABA therapy program. We chose to take both of our children with autism out of the public school system for a variety of reasons, but that is another blog all together.

I think that the relationship between the public school system and ABA service providers has improved some over the years, but back then there were some individuals on both ends that just couldn't see the forest through the trees about why an eclectic approach was best for my little girl.  They both just didn't completely understand what the other was about and how they can benefit children. I get it, ABA isn't what you do at school and vise versa. I have heard it a million times and by the way, I was an ABA therapist in college and a special education teacher by trade. Sheesh- if anyone gets it, I am pretty sure I do! I really think the push from the lead therapist at the time was coming out of ignorance for what the school was actually providing. I really don't think that the two half days a week I was planning on keep my daughter at school was going to inhibit any progress in ABA. At the end of the day I was right! Little pants flourished in both settings.

Here's the thing- autism is a spectrum disorder, so why wouldn't I utilize a spectrum of therapies to treat the issues?

I would like to point out that this was one small hiccup with the ABA service provider we have. They are AMAZING and I am grateful for everything they have done. This error was on behalf of the individual therapist only and she no longer works for their organization.

I have always been comfortable standing up for what I think is right and have never feared trying new things. Advocating for my children is no different, but when the going gets tough and you are in those first years of diagnosis and early intervention, one's confidence can be low. The combination of grief and mommy guilt can wear on even the most confident of souls.

What I have learned from this is simple- I know what is best for my kiddos. I don't need to follow the same path as other parents or do what everyone else suggests. I have my own instincts that make me a very formidable mayor and I will scream it at the top of my lungs any time I need to do so.

I AM MAYOR OF THIS TOWN! Don't question the choices I make for my children or suggest I do it any other way. No one knows what is best for them as much as I do. You can be an expert on anything you want, but don't you dare tell me you are an expert on my children.

Disclaimer- my husband has had an equal voice and we have always agreed. He just isn't as vocal. :)