Before I begin, I just want to warn you that this will be long and it is very personal.
Last week, my inquisitive, intelligent, loving, energetic, beautiful 3-year-old daughter was diagnosed with Mild Autism.
This was not a total shock to us because we have been going through a lot of evaluations and work with various organizations to get support (I will get into that more later), so we were mostly prepared for it, but it was still not easy to hear. In fact, in some ways I think I am still in denial and I know I have a lot to learn.
I believe it is important to share our story because...
I care about raising awareness. After all, April is Autism Awareness Month.
Autism looks different for nearly everyone with the disorder. There are several traits that psychologists look for and if an individual has some of them, they are diagnosed with "Autism Spectrum Disorder". Aly falls in the mild end of the spectrum, which means that, while she is extremely "high-functioning", she exhibits the following symptoms (these symptoms are listed and discussed in further detail here):
Avoidance of eye contact - For Aly, this looks like fleeting eye contact only when I BEG her to PLEASE look at my eyes and listen to me. She glances at me for a split second then looks away as she continues to listen.
Staring at others - I thought this was completely normal for toddlers, but during her evaluation, I was asked if she does this. Turns out, it is one of the symptoms she exhibits.
Intolerance for changes in routine - This is a BIG one for Aly. She thrives on her routines and can do quite well when we go on vacation or to a friend's house ONLY if we stick to her routines. For example, her teeth brushing routine looks like this:
Mommy or daddy brushes teeth while singing "Twinkle Twinkle Little Star"
Aly has a turn to brush her own teeth while Mommy or Daddy sing "Twinkle Twinkle Little Star"
Aly uses a specific cup to swish and spit TWICE.
If any of these steps are skipped (even when she sees Mommy or Daddy brushing our teeth), she corrects us and makes sure it is done right.
Difficulty starting or maintaining social interactions - In a classroom setting, it is difficult for her to ask a specific person for help. She will struggle with a task for a while before holding up the object she is working with and quietly announce "Need help". On a neighborhood playground, she will go up to other children and say, "Hi, my name is Aly", but seems unsure how to proceed from there. She might follow the kids around, she might join in their game (if invited), or she might just walk away after introducing herself.
"...people with classic autism refrain from engaging in social situations, but mildly autistic people will seek social activities and want make friends with others. The challenge is that they just may not know how to do it." - Marcelina Hardy, MSEd, BCC
Difficulty taking turns talking (dominates conversations) - I thought this was another toddler thing, too, but she tries to get involved in a conversation by talking over those who are already speaking. It seems quite rude, but it's just that she currently lacks the social skills to recognize the need to take turns in a conversation.
Difficulty reading other people's body language - She recognizes a change in body language or facial expressions, but she doesn't know what it means. We have been working on this at home and now she constantly asks, "Mommy, what you feeling?". I am very careful to describe my emotion in a factual way and explain why I am having that emotion. If it is anything other than "Happy", she tends to grab my face to make me smile because she knows that smiling=happy, and my sweet girl likes people to be happy.
Advanced language skills for her age - She has always been a loquacious child, happily chattering away to no one in particular. She loves to quote books, TV shows, and movies and it has always been fairly easy to understand her.
Talking a lot about certain topics with which she has a preoccupation - This changes up a lot, but sometimes it's all about dinosaurs (specifically, Dinosaur Train). Currently, its about My Little Ponies; how many there are, their cutie marks, what they like to do, what colors they are, etc.
Verbalizing internal thoughts - When she gets going, her verbal stream of consciousness can last for quite a while. It doesn't always make total sense (because is the verbalization of the thoughts of a 3-year-old), but it makes life interesting and fun.
Hypersensitivity to lights, textures, taste, noises, and other stimuli - This one is slowly emerging, as she has decided she doesn't like tags on the back of her shirts. She also covers her ears at "loud" everyday noises (toilet flushing, garage door opening, water going down the bathtub drain).
I care about giving hope to others who may find themselves in a similar situation.
Aly's story began in December 2015, when it became clear that she was having issues with progressing and being successful in her preschool. After a few months of adjusting her schedule and speaking with the teachers and administration, we were told that it was necessary to pull her out of the school she loved and start the process of figuring out what program would be best for her.
Guys, this was SO HARD. I cried a lot. I questioned my abilities as a mother. I questioned the motives of the school.
All of that heartache was not really necessary. We didn't understand the timing involved with going through the process of school district evaluations and getting her diagnosed. It turns out, the abrupt decision from the administration was the best thing for her.
I was able to call the school district and get her in to be evaluated for a new preschool, which she started at the beginning of March.
I was able to push the local Regional Center to get her in for a psychological evaluation at the end of March...Ok, I may have called them 3-4 times and got turned down at first but finally called on the verge of tears and they agreed to get us in...You do what you have to do and follow your Momma Bear instincts.
I care about parenting my amazing little girl as best as I can.
That includes building a community of supportive, loving people who understand her.
That includes being a strong mommy who shares her burdens. Sharing my burdens means I have enough strength to take on another form to fill out, another therapy, another day of "Mommy, what you feeling?", another tantrum.
That includes setting an example for my daughter that coping in a healthy way is important. For me, coping means taking photos and blogging.
If you have a problem with me sharing this, I don't care.
I don't care if you haven't done your research enough to know that children with this disorder should know that they have it in order to become successful adults. (But, if you wish to educate yourself, you can find an excellent article here.)
"They have to have the expectation that autism is a challenge, not an excuse, to meet the basic standard demands that we all meet every day...High-functioning adults with autism knew they were different. It made a huge difference if they looked at this as a challenge for integrating, rather than being separate or different from others who are their age, it made a big difference." - Bill Jensen, Ph.D.
I don't care if you think I should parent my child differently based on what you think you would do in my situation.
I don't care if you stop following me right now.
This applies to everyone; friends, family, and followers.
That being said, I have some AMAZING friends who have been through the local school system and similar psychological evaluations. These ladies have been invaluable resources as I try to navigate through the legalities and red tape. They have supported us in every way, from talking me through my next steps in order to avoid unnecessary delays, to praying with us, to babysitting Aly while we attend meetings and parent therapies. Erin and Christy, I love you girls and thank God for putting you in our lives.
At the end of the day, I want to do everything I can for my daughter to be successful. I am faithful that God can get us through anything, as long as we do our part to fight the good fight.
"I have fought the good fight, I have finished the race, I have kept the faith." - 2 Timothy 4:7 (NIV)
Her daddy and I have a lot of fight left in us. And so does she.