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…

lex.jpg

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.