Her Beautiful Mind…2 Years Later
In April of 2016, we were still reeling from having just received our 3-year-old daughter’s diagnosis of Mild Autism. The process was stressful (to say the least) and I shared a little about it in a blog post (you can find that post here).
It has been 2 years since this crazy, scary, beautiful journey started. Our lives have changed. Of course they have. When you hear the word "Autism" with regards to your baby, you know life will never be the same.
We had no idea exactly how. No idea. It simply isn't possible.
Autism is a spectrum, so if you have met one person with Autism, you have met one person with Autism. You hear this word, and your mind goes to the worse-case scenario. The "what if's" consume you. Then you get a little more information. Start working through your child's specific needs. And I mean working. This isn't easy. Neuro typical kids have school and maybe a couple of extracurricular activities. ASD kiddos have those things, too. Plus therapies, social groups, and IEP meetings.
Speaking of therapies, before Autism enters your life, you don't know what therapies are involved. We had never heard about ABA therapy before. Never thought of speech therapy as being a thing kids on the spectrum would need. Occupational therapy is necessary for many kiddos, too (and although Aly currently does not receive it, she may need it in the future; it's another option that needs further research and exploration for her specific needs). We didn't know there were inclusion preschool classrooms. We didn't know about any of the resources available. A lot of phone calls, meetings, and questions had to (and still do) take place in order to determine the best course of action for our girl.
So, here is a glimpse at how the last 2 years have gone for us. My prayer is that it will give you insight into our lives with ASD, as well as, some hope if you are at the beginning of your own journey.
1 Year Post-Diagnosis
April of 2017 was a period of reflection for me, as I looked back on our progress over the past year. In some ways, it felt like we just found out about her diagnosis. In other ways, I was amazed by how much has happened and far she had come in just 12 short months. We were able to focus so much more on her strengths. Her Preschool teachers adored her (still do!) and told us positive things about her several times a week. Here are some favorites (because they are our favorite things about her, too, and it is nice to know she had teachers who see who she is):
“She can read!”
“We can explain things to her. We can talk to her almost like she is an adult.”
“We love her imagination! She is so much fun!”
“Oh, yes; we keep the rocks she brings to us. We have a little rock collection here for her.”
(Because she is teaching herself Spanish and Sign Language) “By the time she is 10, she’ll be speaking several languages. Maybe even Russian. We can see her being a UN Interpreter when she grows up.”
The first year after her diagnosis was a busy year. But when looking back, she won’t remember it the same way her daddy and I do. She remembers the special weekend in Julian, her awesome teachers and school friends, going to Sea World with her friend Willow, apple picking, many visits to the zoo, her first camping trip, and spending time with her Auntie and Uncle in snowy Big Bear. These are the things she still talks about. And that is our goal for her moving forward. To focus on the good.
2 Years Post-Diagnosis
Now, April of 2018, we are focused.
Focused on the “wins” of each day.
I am focused on her future as well as my own.
We are no longer fearful, but we know we need to keep our eye on the prize.
She has CRUSHED every goal set for her in the last 2 years of Preschool, so next year she will head to Kindergarten. While she will still have an IEP (Individual Education Plan) and appropriate accommodations for her specific needs, she will be in a typical General Education classroom.
With all neuro-typical classmates and a Gen Ed teacher.
I go through moments of nervousness, but our school district is a good one. I have faith in our partnership with them and I have faith in her abilities.
We still have moments of denial. She is so high-functioning that sometimes we forget and get frustrated, thinking she is being disrespectful.
It helps to pay attention during therapy times to see how they deal with her meltdowns and other behaviors.
It also helps to remind ourselves that she is an inherently GOOD kid and if she is exhibiting a “bad” behavior, she may be having a tough time and we then have to exercise our own flexibility and open-mindedness to discover the cause.
The anger, fear, and frustration we felt at the journey leading up to her diagnosis is fading. It was scary when we were told she was not progressing in her first Preschool and we would have to find a program that better fit her needs. It was frustrating because we didn’t know what those “needs” were yet. Now we just have to deal with IEP’s, making sure we advocate for accommodations she needs at home at at school, and insurance battles.
I know, in my head, that the way things were handled at her first preschool was the best for Aly because it made us jump on the situation and handle it as quickly as we could. They knew something was up and that they weren’t equipped to handle her differences.
In my heart, though, it’s like I have PTSD. Aly was hand-picked by last year’s teachers to be in this year’s “4-year inclusion” classroom for her final year of Preschool. This means that, she is in a General Education classroom where the majority of kiddos are neurotypical, while Aly and only a handful of others have IEPs and individual pull-out services (Aly receives 30 minutes a week of Speech/communication therapy).
Her teachers were so excited. I was, too, but when they said the words “General Education”, had an unexpected reaction.
My eyes filled with tears.
I dug my fingers into my husband’s leg.
Flash-backs of incident reports and phone calls to come pick up my daughter for kicking, biting, and repetitive behaviors filled my mind.
Despite my trust in the teacher sitting across from me, and despite my excitement going into the meeting, I became terrified.
But, I kept telling myself that she will be in the same school, right across the hall from the Special Education teachers who know her very well. I kept telling myself that she has come so far since that first year of Preschool. I kept telling myself to be still and know that God has got this. I really should hang a pretty sign that says “Psalm 46:10” somewhere prominent in my home…at least until she graduates from high school…
Everything has turned out great. She is a leader in her Preschool class. Other kids look up to her because she is so smart and can read to them. She is able to see last year’s teacher every day. This teacher has become a cherished friend because she gave me hope. And she has cheered us on as we received the news that Aly will be able to go to her school of residence in a Gen Ed Kinder class next year.
I still feel anxious.
I still get that PTSD-like panic when I think about it. Tears well. Heart beats faster.
I am still human.
I have faith in my girl. She can do this.
Regardless of all the other emotions we feel, above all, we are thankful.
Things are different than they were 2 years ago.
Aly is thriving in school.
She has a best friend with whom she bonded immediately in gymnastics class. Although, no longer in gymnastics class, the girls are now in the same Girl Scout troop and LOVE participating in this new activity together.
While she makes progress in most of her goals, new challenges continue to pop up. For example, she has started to develop a stutter. It doesn’t seem to bother her or slow her down, but the Speech therapist at her school has continued to work with her on this specific problem. It was actually sort of a blessing because I was nervous about her losing her IEP going into Kinder but because of her Speech needs, she was able to keep it (and I was able to easily add accommodations to it that I would like to see met in the classroom).
We moved to a new house with a yard and fulfilled our promise of getting a dog for our girl. Although a (mostly) untrained adopted rescue, this pup has been a calming influence on Aly.
Regarding the symptoms (which can be found at https://autism.lovetoknow.com/Symptoms_of_Mild_Autism) covered in my first blog:
My Muse – Leading Me to Become Spectrum Inspired
My amazing girl has inspired me to capture moments as they happen, for our own family as well as for my clients. We were blessed to move into a new home with room for a studio so that I can continue to photograph posed newborns and first-year milestone sessions because I LOVE them, but family sessions receive a documentary-style approach. I have always been a fan of this style and follow many photographers with similar artistry. During our journey over the last 2 years, I found the group Spectrum Inspired, which is an organization that connects families who have been touched by Autism with photographers to do free lifestyle/documentary style photo sessions for them.
I became obsessed with this group and promised myself that one day I would work up the courage to apply to be a photographer. At the end of 2017, I finally did it and was accepted!
I am so excited to be able to give back to my local community in such a profound way. Images of my kiddo being herself are (obviously) near and dear to my heart and I know other families will cherish them the same way.
Incidentally, if you are a family that has been affected by Autism, you can apply to be considered for a free Spectrum Inspired session.
Filling out the application will give the organization information to help them get to know your family. Once accepted, you will be put in contact with a local SI photographer to discuss the details of your session.