To breathe new life

I am having a hard time putting into words the feeling I have this morning. I think it could best be described as determination and happiness. Happiness?? wow… happiness! This feels good.

Last night my oldest daughter started Girl Scouts. It has been some time since she was a part of something. About a year and a half ago she stopped doing gymnastics. This was both her decision with a combination of my own. Unfortunately funds were low in our family and we had to cut a few recreational activities plus, she was not enjoying it anymore. She would always ask to not go on her gym nights. I decided to stop gymnastics with the full intention that, as soon as finances were back on track that she would join in something. Well, money never got right.

I can almost compare this to families who plan to have a baby…
If you plan for the perfect time to have baby, you will never have a baby because something always happens.

I couldn’t let that stop my kids from joining something. In fact, I believe children MUST be in activities outside of school to keep them focused. Well, after much talk she decided to join girl scouts.  Last night was her first troop meeting. After an hour and a half with her first meeting my daughter ran out of that school happier than I have seen her in a long time. She had made a group of friends and she was on top of the world.

I felt like a new life had swam right thru me. I couldn’t help but smile for my baby girl. We went home and I found I instantly had energy to do things around the house and I was HAPPY.

To see my daughter happy and thriving is one of the most incredible feelings. These are the things we as mothers  must see. When our children are happy, we are happy.

I guess I just wanted to update the world wide web with the fact today – IS A GOOD DAY!

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Living with Autism

After Alexis’ diagnosis I think I sat in a world of denial. I hope to discuss some of the emotions I have gone through in the last 2 years of her life towards the end of this blog.
Right now though, I would like to talk about some of the behaviors my little one has that make her who she is. I also want to explain what autism is to us and our family.
Even to this day I will see a specific characteristic in Alexis and it is almost like a light bulb goes off and I think… there it is… thats what it is…”That is autism”.
I think most people have a misconception of what Autism is and even to this day I get a lot of eye rolling from friends and family who either don’t want to accept that she is a child with autism OR they simply don’t believe in it. The amount of times I have personally heard  “she just needs more discipline” or “if she acted like that with me; I would put a stop to it real quick” or even “you just spoil her too much”. At one point in my life, even just a few short months ago all the back to the beginning days into her diagnosis; I would simply nod my head and even say “you’re probably right, I do spoil her rotten”. At that time I simply didn’t know enough about autism to come back at them with anything intelligent. To be honest with you I was extremely ignorant to autism and what it actually meant. I believe most of our world is, and that is sad because it is a very common struggle for our kids these days.

In 2014 the CDC released a statistic that identified 1 in 68 children (1 in 42 boys and 1 in 189 girls) as having autism spectrum disorder (ASD). That is an astonishing number of children in our country today who struggle with many of the same things Alexis does.

I think the misconception and the denial most people face is due to the outward appearance and behavior Alexis has. When she has one of her “meltdowns” (that is the term we – along with the school have decided to classify her most emotional times as) it is easy to assume it as a tantrum. I see it all the time, people look at me and roll their eyes, and I hear from their mouths “she needs to get control of her daughter”.  What these strangers who know nothing about my daughter and even FAMILY do not see and what no one even sees or feels – is what Alexis is feeling on the inside.  certain situations she literally feels pain. Pain from sounds (sensory overload), lights being too loud, Noises piercing her ears and yes, sometimes it’s a melt down due to being unable to work through her frustrations.

The biggest struggle for Alexis currently is being in public and the most common place we are in public is when we go grocery shopping or any type of department store. Alexis has yet to learn when is the appropriate time to act silly, hyper and playful. This is typical of any child 5 years old, but with Alexis – all the lights, all the people, all the different noises and all the different things she looks at completely overwhelm her. I would imagine it is something like a kaleidoscope of figures and something like what I have posted below.

color_me_vivid_kaleidoscope_by_tasteslikepurple1

All of the different things she feels, sees and senses become too much for her brain to analyze and the only way she reacts is by making her own type of noises, movements and distractions.

Giving her “the look” which I can easily do to my 9 year old and she instantly stops what she is doing – does not work. She sees my face smiling, sad, angry and it doesn’t connect to her brain to know what emotion I am feeling. To her, every expression on my face is the same. I must talk her through how I’m feeling and explain to her that she cannot act the way she is.

 

It is so hard for me to pin point all the challenges we have with Alexis because what goes on in our life has become our normal. I would imagine if someone came into our home for longer than a few days in a row, they would certainly be able to point out more specific things, but to list them all for you myself seems impossible. To make it the easiest and not draw out a big explanation, here are a few of the amazing fun, unique and interesting things that make Alexis who she is.

She can become consumed with a particular activity she is doing and drown out the world around her. Typically this happens when she is on her Ipad or when she is playing with her action figures, building blocks, marbles or magnets. It is almost like tunnel vision, she cannot hear or see anything else going on around her, therefore she is consumed with what she is doing and why I think she has such an amazing imagination.

Her biggest reaction she has to every particular situation is laughter and acting silly. Like I stated above, she doesn’t completely understand others emotions by body language or facial expressions so her way of handling this is to act silly, make loud noises and to get very close to the person she is around.

She is extremely loving and affectionate to whom she chooses to be.

School is very challenging for her due to the amount of people she is around, the lights, the noises and the best way for her to release the pain and uncomfortable feelings  she is feeling is commonly by moving her legs, arms, whole body, humming, singing and jumping. When she is going through a rough time in her day she has found that making loud screaming noises is a form of comfort.

She has an extremely high tolerance for pain.

She has yet to build any friendship, but we are working on teaching her to play with children instead of parallel to them.

I have found that she has successful transitioned into social situation by mimicking her older sister. More times than not I will see Alexis’ movement mirrored from what I have seen and heard Jaylin (her sister) do. It can be something as simple as putting her hands on her hips when she is mad to saying the same exact thing as Jaylin and following her around as if they were attached at the hip.

Last but not least – she just wants to have friends and be a kid like everyone else.

 

Our Road to a Diagnosis

Since the day my youngest daughter was born; I always knew she was unique, amazing, incredible, her own person and extremely loving. I remember holding her as a new born baby and feeling astonished at the amount of, or should I say lack there of, crying she would do. She always seemed content and she had the sleeping thing down with in the first 3 months of her life. I truly could not have asked for a better baby.

When Alexis hit 1 years old she was already walking and I was amazed since it had taken our oldest 13 months to get the whole walking thing down. I do remember feeling concerned as to the vocabulary as months went on after her 18 month mark and even into her turning 2 years old. She would do a lot of pointing, grunting, whining towards her sister and to me. I always chalked it up to the fact she was the baby in the family and one small whimper and me, her sister or her daddy were getting whatever we thought she needed, so we didn’t put too much thought into it.

Once she turned 3, our in-home care provider whom my children have gone to since my oldest was 3 months old, mentioned getting her evaluated to start in the early child hood center. She  mentioned that she always recommends this program to families who live in our town and the earliest kiddos can get tested is 3. I was clueless about this program because we had just recently moved to the particular city we now live at this time. Our baby sitter raved and raved about this program and mentioned it was free (as far as tuition and what not – of course our taxes pay for it). We aren’t the most financially fortunate people so the idea of free school for my daughter who I did have some slight concerns about was everything I needed to hear.
At 3 years old Alexis was having a hard time focusing, listening, potty training (still), forming full sentences, sitting still and she would not talk to me, communicate with me or show she understand what I was saying. I was concerned.
So the next few weeks following her 3rd birthday I got her evaluated. Little did I know this school was exactly what we needed. This was put in our life for a reason and I couldn’t have been more thankful. This school is for kids who just need that little boost to get started before kindergarten and well, Alexis was accepted and we were thrilled.
At 3 years old we were going school supply shopping, preparing her for bus rides to and from school and helping to get her excited for teachers, new friends and all fun things involved.

Little did we know what was headed our way….

The school year started Alexis was cute as ever with her new back pack and her first day of preschool outfit.

She’s the little blonde below…

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I could tell she was confused but excited for this adventure and I didn’t really have much hesitation sending her to school. I was happy she was getting this early jump on education, but then the phone calls started. With in the first couple weeks of the school year her teacher was emailing and calling expressing her concern for Alexis. She wanted to come together with a few other people/counselors/social workers/teachers with in the school to discuss Alexis.
Honestly, I was shocked. “what??”
At this point I could see and understand what issues they were having. We were having some issues similar at home and at daycare, but I’de never experienced this sort of thing before. My oldest daughter was in her 2nd year of school and she was thriving and I had never received a phone call of concern over her. I was confused, but I went to these meetings with an open mind.

The first meeting was overwhelming. If you’ve ever been to one of these you will understand. There is one of you and about 10 other people. They go on and on about their concerns for your child and you start to think, “do they have anything good to say about my baby” and they do, but you’re numb. At least I felt numb… or overwhelmed…

The next step was to have her tested and evaluated to start the IEP process. “the what??”
I was so confused. I had never heard of this before in my life, but it sounded like a good idea and it sounded like they all wanted what is best for my daughter, so the process began.

I was sent home with numerous documents and questionnaires to fill out about lexi. It took me daaaaaayyyy to fill them all out.
Again, I was overwhelmed.

After months of testing, evaluations and meetings after meetings… I finally had the final report of the IEP. Alexis tested in the young child with developmental delay. ok??
What does that even mean?
I guess I understood it, I recognized it and I even accepted it… but what can we do to help her is the question I wanted answered.

They were going to have some one on one time with her.

Alexis’ biggest struggles are as follows:
Social interaction
Hyper
no focus
She can’t sit still
She doesn’t understand your emotions (As in someone she is interacting with)
No eye contact
Melt downs
Unable to understand what she is feeling.

As the school year went on, she didn’t improve or seem to be soaking in the help she was getting so I finally made an appointment with our local children hospital to work on getting her evaluated for what I thought  might be ADHD, ADD and at the most – autism, but I never gave that too much thought until the months after the evaluation – 2 summers ago and they diagnosed my daughter with ASD which stands for Autism spectrum disorder. My daughter has Autism.
She has been labeled.
She will live with this for the rest of her life.

The shock didn’t ware off until 2 years later, now… when she started kindergarten…

And I will continue on my next blog about the emotions that came along with this diagnosis.