Her Beautiful Mind

April 07, 2016  •  7 Comments

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. 

Copyright: Jecca Lynn Photography

 

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.

Copyright: Jecca Lynn Photography

 

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.

Copyright: Jecca Lynn Photography

 

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.

Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography

 

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

 

Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography

 

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.

Copyright: Jecca Lynn Photography

 

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.

Copyright: Jecca Lynn Photography

 

 

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.

Copyright: Jecca Lynn Photography

 

Copyright: Jecca Lynn Photography

Copyright: Jecca Lynn Photography

 

Copyright: Jecca Lynn Photography

 

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.

Copyright: Jecca Lynn Photography

Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography

Copyright: Jecca Lynn Photography

 

 

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.

Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography

 

 

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).

Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography

 

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. 

Copyright: Jecca Lynn Photography

 

Guys, this was SO HARD. I cried a lot. I questioned my abilities as a mother. I questioned the motives of the school. 

Copyright: Jecca Lynn Photography

 

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.

Copyright: Jecca Lynn Photography

Copyright: Jecca Lynn Photography

 

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.

Copyright: Jecca Lynn Photography

Copyright: Jecca Lynn Photography

 

That includes setting an example for my daughter that coping in a healthy way is important. For me, coping means taking photos and blogging.

Copyright: Jecca Lynn Photography

 

 

 

 

If you have a problem with me sharing this, I don't care.

Copyright: Jecca Lynn Photography

 

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.

 

Copyright: Jecca Lynn Photography

Copyright: Jecca Lynn Photography

 

I don't care if you think I should parent my child differently based on what you think you would do in my situation.

Copyright: Jecca Lynn Photography

Copyright: Jecca Lynn Photography

 

I don't care if you stop following me right now.

Copyright: Jecca Lynn Photography

Copyright: Jecca Lynn Photography

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.

 

Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography

Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography

Copyright: Jecca Lynn Photography

Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography

Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography

Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography Copyright: Jecca Lynn Photography

 


Comments

Aunt Donna(non-registered)
Thank you for sharing your struggles. God has entrusted you with Ally, and will give you the wisdom and resources you need. I admire you for pushing through. If anything I have learned in this life is that life is a journey not a destination. We are meant to struggle and as a result we grow stronger. Enjoy the journey, smile, laugh, cry, pray, and grow! She will be fine. She has amazing parents who love her and an amazing Savior Jesus who walks through the struggles with you. Your photography is amazing and inspiring. I love you. Auntie Donna
Grand Pa Dan(non-registered)
Here to help, always. For Aly.......
Kimberly Pollan Allen(non-registered)
Thank you for sharing. I also would have thought a lot of those qualities are just toddler things....you are a very good, intuitive momma! Aly is a bright and beautiful little girl who will flourish with parents like you! Keep up the good (hard!) work. :)
Amanda K(non-registered)
Such a beautifully written post. Aly is lucky to have such a wonderful mother and father who are ensuring the best outcome you can. I have no doubt Aly is going to be successful in life with the two of you encouraging her and making the best choices for her. She is a very lucky little girl!
Gramps(non-registered)
We are so glad you and Chris have found a path that seems to fit your observations and basic instinct. I too have been reading about this and have learned a great deal. We are here to support your decisions, not to judge them. It is clear that this takes constant attention and continued evaluation of what is working and what is not. One day does not win or lose the battle. It is a continued effort that will pay off in huge dividends as she develops and learns to master or accommodate her challenges. As an adult she will have a drive, energy, creativity, and unique view that leaves many wondering how she does it. We are so glad she has you and Chris helping her with this.
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