My name is Judith and my daughter Jordan has always been a little different. As an infant & toddler she was very energetic and smart. She was crawling at 8 months old and started walking two weeks later. It wasnt until she was about 18 months when we started getting concerned something was not quite right. She was trying to talk but it seemed to be in her own language and very little was understandable. We did early head start, some speech therapy, even had a simple test for autism at that point. It wasnt only her speech, we saw other things like very little if any eye contact, sleep was rare, she had fave things and stuck to them totally uninterested in anything else and much more. Looking back now, I wish I had known more about autism and the signs, & had pushed for more intensive testing. The woman who did the testing wasnt with Jordan even an hr n it was at my house. At that time she didnt think Autism was there so Jordan then continued to work with the early head start worker n eventually in speech focused head start for two yrs. Then for several yrs we went from one doctor to another, many different diagnosiss, therapies, even a period where she was hospitalized at a psych hospital for a week at 4 years old. I had never heard the term Aspergers until one particular therapy session when Jordan was about 4. After seeing Jordan every week for some time and seeing some of the things I had been dealing with at home she gave me a book strictly about Aspergers to read. For the first time I was seeing all Jordans behaviors and various traits in one place. Finally some sort of explanation. It was hardly that easy by any means. The problem is girls tend to be more difficult to diagnose as being on the spectrum than boys. Especially if they are high functioning or have Aspergers. I had no clue about any of this until I was in the middle of it and we hit roadblock after roadblock. There has been many many red flags, more than I can even count at this point but we cant change the past only work on bettering the future. Finally earlier this yr, Jordan was able to get into a fairly local NeuroPsychologist who specialized in Autism. She was a godsend and my nerves were beyond shot leading up to, during, and throughout the waiting period for the results. We got the call the results were in, so there I sat across the desk and felt like the world depending on the next thing the dr said. I thought with Jordans long history I was more than prepared. Then it happened, Im confident that from the testing I completed, and all the paperwork I have read over (school, medical docs, etc) that you were right in your suspicion of Autism. It is my professional opinion Jordan falls under the High functioning end of the spectrum along with a learning disability in math. It literally felt like the air was sucked out of the room, I couldnt breathe, but Jordan was sitting inches from me so I had to keep a straight face n thank her for everything. She could tell I needed some time n simply said, give me a call when youre ready or have any questions or help with anything, ever. I want to see Jordan once a year and keep track of how she is doing. From that point I have felt like I have been on a roller coaster! emotionally and otherwise. The best thing I did for myself is when I got the official word I took a few days to take it in, feel any emotions that came, n just be. Then I did my research, for support, services & programs in my area, therapies that could help. Made a to do list so I could keep track of things and not get overwhelmed. This helped a ton and still does! We as new autism mommas have to be our childs voice, their advocate, n sometimes their army. They depend on us to do what has to be done and stay strong doing it. To keep my energy up whether good day or bad I take some me time, whether its in the morning before the kids are up, after bedtime, during school hrs, whenever, its crucial! What have I learned throughout all of this? Never give up! Not on your child, yourself, or what you feel is best for your family. I had tons of pushback along the way from many so called professionals, told me I didnt know what I was talking about and there was no way Jordan would ever be found as being on the spectrum. I did not give up, I did not let anything get in my way and finally we have the correct answers and we proceed from this point forward. Autism doesnt change who the child is before the autism diagnosis, or who they could be in the future, only changes the path a little to getting there. There are good days and bad but no matter what there are lots of people out here that have been in your shoes and new parents everyday starting this journey. You are never alone! If you have a daughter on the spectrum just think pink makes the spectrum look good dont it?! The biggest part of my everyday sanity is the supportive community on Facebook, whether its a great day and Jordan has done something great or a bad day and Im at the end of my rope theres always someone who has been there, done that, we get it, n they get us. Whether its online or in your community find a support network! Family, friends, whoever because we are not alone and we often need a shoulder n a hug. Newbie Autism mom Judith :-)
Posted on: Mon, 27 Jan 2014 23:31:06 +0000
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