Our journey ahead

I will do my best to keep this brief since I know most that read this blog know what is going on in our lives. I have a feeling it's going to be a very long post so you might want to get comfy!



When Macie was around 16 months I started noticing that she wasn't making a whole lot of progress with talking, pretend play, naming body parts, animals, etc. At first I just thought she was "developing at her own pace", but then other things started happening. She wasn't using the words anymore that she was previously using, she started doing some repetitious things (rocking, hand flapping, etc.), and her emotions were very extreme. These are just a few of the things that I noticed, but just to get an idea. Emma was just born, and Macie's whole life changed in a matter of days so I just thought it was that at first. Since I was up so much in the night, I started noticing that Macie was tossing and turning all night long, she never seemed to sleep peacefully. She never wakes up completely, or cries out....just restless. I started doing some research online (not always a good thing) on Autism, sensory disorders, sleep issues, tantrums, etc. After doing all my research I realized that she has an awful lot of red flags for Autism and Sensory Integration Disorder. I became obsessed with observing Macie, doing research, and asking questions to family, friends, and her Doctor. I was convinced she was/is Autistic and I was a wreck. I contacted Child and Family Connections of DuPage County- they evaluate children ages birth to 36 months. After speaking with our Case Worker, she felt it would be beneficial to send out three therapists to evaluate Macie. Occupational, behavioral and speech. They all came out within a 2 week span and did their evaluations. We also met with a Social Worker to help us wrap our brains around everything that is going on. Last Friday, all the therapists, case worker, and social worker came back to our house to go over their "findings". They found she is deficient in many different areas and they are recommending immediate and aggressive therapy in all areas. It was hard to take all of it in, but was reassuring to know that we are helping Macie at such a young age. She is at such a critical age right now and therapy should help her tremendously. She will hopefully catch up to where she should be. I asked them about Autism, but they won't/wouldn't diagnose that with her right now. They want to do about 3 months of therapy and then re-evaluate her. If they suspect she may have Autism, they have to refer us to a Developmental Pediatrician, and they make the diagnosis.
All of the therapists were concerned about her sleeping habits and also her possible allergy to dairy. If she's not sleeping and/or doesn't feel good due to allergies, that may contribute to delays in some areas. We have an appointment with her Dr. on Friday to discuss those two issues. I am sure he will refer us to an ENT, and an Allergist.
The Developmental Therapist has already called to set up appointments and get going with Macie. All of this is done in our house, they come to us for everything. That is a huge relief considering Macie will have therapy 4-5 times per week. We will also have a social worker come here twice a month to talk to us about everything.
So, that's where we stand right now. I will do my best to keep everyone updated on her progress.