It’s been 6 months since we found out Aidan was on the Autism Spectrum with PDD-NOS and it has felt like I have been on spin cycle every day ever since. I’ll never forget the morning he got the diagnosis, going in I was completely torn. I wanted a diagnosis, I mean I wanted to know what was wrong with my little guy BUT who would ever want something to be wrong with their child? At the same time feeling scared that another doctor was going to look at me like I was crazy and say “oh no he’s just a two year old”. Then we went through the test where the doctor asked me and his early intervention coordinator (yes she went to the appointment with me, she really is THE BEST!) a bunch of questions and then played with Aidan. At the end of the appointment she scored his results and told me she was diagnosing him with PDD-NOS. I fought back the tears even though I had anticipated the results; I hated to imagine what he was going through. The next few weeks were an emotional rollercoaster, Between being happy to have answers, sad that he had the diagnosis, and mad that it took so long to get it, I was feeling plain Crazy and since Hubby was working 18 hour days back then and didn’t really have any idea what Autism was I was feeling very lonely. But all these feeling soon passed because I quickly realized I didn’t have time to have a pity party I needed to find every way possible to help improve my sons condition! Right now Aidan receives services 5 days a week from different therapists, he has a speech therapist, developmental therapist, occupational therapist, autism therapist, and two floor time therapists. Luckily our insurance covers it all because we could never afford this type of care. My little guy is VERY busy but luckily he loves all of the wonderful ladies that come out to see him so he really enjoys it. These services have helped him so much there are days I look at him and think how could there possibly be anything wrong with him, this is all wrong…. Then he has a melt down or a really unregulated day and I am smacked back into reality. Yet no matter the struggles we have and will face I can’t say that I would change anything given the chance because he is hands down the funniest most loveable little boy I have ever loved!
One of the many tests the neurologist referred Lilly to was an EEG for her staring spells that have been scaring me allot lately.
We can be in the middle of playing when all of a sudden she just completely zones out and stairs off into space or at an object. They are doing the 48 hour EEG to rule out any type of seizure disorder.
We went into Children’s Hospital and it took them about an hour and a half to attach a ton of little electrodes to her head then wrap up and cover them all then run the wires to a case that they put in a cute little backpack. I was a nervous wreck that I was going to be back in an hour with them all pulled off but I was shocked and proud at how good my little princess did! she didn’t touch them at all, all weekend! Not one fell off and she didn’t fight me once about the backpack. I did try to keep her separated from Aidan whenever I had to do something that took my attention away from them but all and all it went allot smoother than I anticipated!
We went back and it only took about 20 minutes to get them all off, her hair was a hot mess but the grease they use to remove the electrodes helped allot with being able to comb through it and within one wash it was back to its normal curly mess.
NOW we have to wait 2 weeks for the results….. seriously! ugh
Lilly went to the optometrist to make sure her squinting and eye rolling weren’t caused by any type of vision problem.
She did awesome! Her timid personality really makes these types of appointments alot easier than the boys!
She passed all her tests, and has no vision problems:)
Something had been Tugging at my gut lately about Lilly, and after walking through Aidan’s “diagnosis stage” I remember always hearing “a mother just knows, follow your gut” so I made an appointment with a neurologist at Children’s Hospital who was absolutely fabulous…… And Lilly got the diagnosis of autism spectrum disorder! It’s so strange that feeling you get when a doctor confirms your child has a disability, that feeling of sadness that they have something that may hinder them, happy that you have answers, worried about upcoming tests and specialists, and so many more feelings that are jumbled into that pit in a mothers stomach. As I work through those feelings now knowing both twins are on the spectrum I have good days and bad days but am absolutely dedicated to learning how to become the best advocate my children could ever have.
I never thought it would be so heartbreaking to say goodbye to the twins EI teachers, but I was in tears every day of the week saying goodbye to one after the other.
I know when Anthony was a toddler and had a speech delay, it was sad knowing his therapist was leaving and he was growing up BUT when the twins therapists left it was so much different, yes I was sad that they were growing up so fast but at the same time I was uber excited to see them going off to preschool, I mean finally a moment to shower without a little person trying to climb in! What I was sad about was way more personal this go around, the twins each had 6 therapists and about 20 hours of services each, so these therapists weren’t just teaching the kids, they listened to my meltdowns, went to doctor appointments with me, watched each milestone the kids met alongside me, they taught me how to parent two autistic toddlers and showed me every resource available. They were more than therapists, they were in our home every day, and were family.
So I wanted to do something special, but with 12 of them I couldn’t afford anything close to what they deserved, but I came up with these cute little Bracelets, the stamped boxes say it all!
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