Peanut had her Autism evaluation today.
Let me first start by saying, currently I am feeling numb and crushed. This has been a very emotional day for us…I think maybe me more so. The test was conclusive that Jana’s current assessment scores are reflective of her having moderate to severe Autism (In CA they are not able to legally diagnose until the age of 3.) So what does a dual diagnosis mean? It means even more changes. She will now need to add ABA (Applied Behavior Analysis) to her therapy schedule. She has a chance of being non-verbal and/or limited communication. It can further delay or impair her mobility and walking, her fine and gross motor skills and her overall development. With this dual diagnosis, the chance of her attending a mainstream school is now in question. She will most likely never be able to live on her own, she will probably never create a deep relationship with someone to marry, and I have no idea what her developmental goals will be now.
Listening to the doctor list off where Jana fits developmentally in different areas felt like she was stabbing me in the heart. To hear my precious 27 months old has an overall age development of a 5-10-month-old was devastating! I knew she was delayed…obviously, but not that much! It took every bit of energy I had to hold it together while she listed off Peanuts delays. With each new test result, I saw more and more dreams I had for her vanishing away.
I am part of a FB Down Syndrome/Autism support group. I went to them almost immediately for help. I felt broken and alone. The amazing family I’ve found in our Down Syndrome community suddenly felt so disconnected to us. She will no longer be experiencing what most of those kiddos experience. As they continue to develop and grow…she will stay the same. She has never “fit” with typical kids, now I feel she doesn’t fit with kids with DS either. A mother responded to me and it touched exactly what I was feeling…
I think we all feel that way when getting that second diagnosis. It is like getting the wind knocked out of you, again. Just like when I heard that my son had Down Syndrome although the second diagnosis it was a shorter time to get through the feelings of “loss”! I tell people when you hear your child has Down Syndrome, you go through a time of mourning the loss of a typical child. When you get the Autism diagnosis I mourned the loss of a typical child with Down Syndrome. It’s like before your child is born you dream about who they will become and what they will do and then, bam, Down Syndrome. Then you think, look at all of these young adults with Down Syndrome doing amazing things, then BAM, that second diagnosis! Now what do you dream? One day at a time, sister. Create my own dreams each day. My son is 15 and even though he’s non verbal, he touches everyone’s heart that has the opportunity to know him and changes people’s lives for good. I know that sounds strange, but people tell me that all the time. Keep up the good work.
Right now I feel stuck. Right now, I no longer know how to dream for Peanut. I feel like we are starting from day one again. New obstacles she will face, new setbacks, new fears we must now conquer. Just thinking about how much harder life will be for my sweet girl now brings me to tears. She had to work hard with “just a DS” diagnosis. Now she has to work even twice as hard…to still be drastically behind her typical and DS friends. This really sucks! There is no other way to put it. I don’t want this diagnosis. I do not want to fight with our Regional Center to add ABA. I don’t want to add yet another specialist we need to see on our already busy calendar. But we will do it! I told myself I am allowing this weekend to be sad and have a small pity party…but when Monday comes along, it’s back to business. I will do everything imaginable to help my daughter be the very best she can be. If that means she will only reach a 3, 5, or 10-year old developmental stage, then I will always cherish my forever baby. I will support her, love her and cheer her on along the way as she makes her own dreams. She will still be a world changer…you can bet on that!