Saturday, January 20, 2018

We finally may get some answers!

So I haven't really spoken about this here, but I think it's time I open up about this, this issue gives me so much anxiety and I am very fearful, so hear it goes!

My youngest, my boy, my Dylan is finally scheduled to meet with a neurologist in April, we finally will get some answers to a lot of questions that we have, I hope!!!! Fingers crossed!!!!

After have two girls we were ecstatic to have a boy. You know mom's and their boys. The girls were and are all about their dad and I can't be happier, I am a total daddy's girl myself. So I was so happy to have my boy. His pregnancy was very difficult for me and after he was born, there were so many changes in my life that happened so quickly and as I detailed in this blog before my postpartum with him was something that I am starting to actually deal with almost four years later. I guess all these issues have made my bond with him a little tighter. Of course I love all my children, Layla is my independent, strong minded girl, ready to take on anything and everything, Ava is my dreamer, her love of life and her imagination always reminds me not to take everything so seriously. The there is Dylan he is a creature all his own, he loves to follow his sister, but he is his own child, OK playing on his own but happy to have others around him, he won't be told to do things on anyone's time. He likes to figure things out on his own and he will not be rushed, he will get there on his own time.

I know every child is different and we shouldn't compare, but when it came to seeing the advancements that the girls had, and the age that they achieved them and seeing that Dylan was not accomplishing them it got me a little worried. Especially with his speech. I wrote about this I think here before, but Dylan speech was delayed when he was younger. I would call him my caveman because he would grunt to get attention from us and didn't really speak. I found this difficult to deal with and I wanted to "fix" him. With the help of his pediatrician we found a speech therapist, who has become a friend, and she was a godsend, let me tell you. She helped Dylan find his voice and lord he has not stopped talking. I am so grateful for Jenny, she was so patient with Dylan and she was one of the first people to tell me that she saw red flags for Autism in him.

I read a lot, and I follow a lot of blogs from moms with Autistic children and I saw those flags too. But I had to admit that will all of the acceptance and all the praise I give for those moms who many have become my friends, like Amy who is over at the Awesome mom, I had a moment of panic a moment of "nope not my kid" So I went to Amy for help, for guidance, for a kick in the ass when I cried "why my kid" when my husband tried to turn a blind eye and tell me that nothing was different about Dylan, she helped me navigate through all these feelings and struggles. At the time of his speech therapy he was 2 going on 3 years old, the program he was in was ending and in order to get him additional resources we had to go to the department of education in our county and get him evaluated, if they deemed he needed more help they would start him in a school. My child was not even potty trained and I was facing the possibility of putting my child every day on a school bus and sending him off to get taken care of by other people. My husband and I got ready for this meeting we drove almost an hour to this place, that day was a tad cold for Florida, so we bundled our kid up and got in the car, traffic was a crazy, and Dylan not really good in cars long distances throw up all over himself, his car seat was a mess his jacket was full of throw up we had to pull over. I called the place told them we would be late and we tried all we could to clean Dylan up as best we could. What a first impression, we made has we took Dylan in to this classroom wrapped in my husband hoddie because his jacket was full of throw up. The evaluation proceeded and Dylan did great. He answered all their questions, he sat down and stood still when he needed and they were amazed by his vocabulary and his speech. We left there with a clearance that he was free to be finished with the program he was in and that he didn't need any extra help. The recommended we put him in daycare to help with his social skills, cause at that point he was only with his grandmother during the day while we worked and the girls went to school. I was a bit disappointed, as a mom you know your kid, so they told me if in a year we felt he still needed more help we call to get another evaluation.

We took their advice, we got Dylan fully potty trained and we enrolled him a daycare near our home that Ava went to when we first moved and like its run by a church, they understand financial struggles and work with your budget, so we started him there part time. My god he hated it every day it was a struggle to get him to go and I would leave him there every day in the verge of tears, he would cry while he was getting ready and when we would leave him there, I could hear his cries in the hall way. I would call from work to check on him, they would tell me once I left he quieted down, that I needed to stop calling that he was fine. We had another angel sent to us in the form of his teacher, Ms. Helen, she was like a Dylan whisperer, she understood him she took her time with him and she didn't mind taking the time with him, and like she likes to call it giving him his space.

I still was a little unsettled, though Dylan's speech is now where it is supposed to be, there are parts of his behavior that I just found out of place I guess. He complains about noise, everyone is noisy to him especially in his class, he plays well with his sisters, but until recently when we went to parks he didn't interact with others. He plays with others now but I notice when he is done he is done. He doesn't mind playing alone. He loves routine, he needs it, you break his routine and he freaks out. He does "flapping" a lot especially when he is angry or over stimulated, he walks on his tip toes most of the time unless we correct him. It's been a over a year since that evaluation and I still notice somethings in him that I worry when he goes to a "normal" school environment like Kindergarten he will be deemed as a problem when he is not, I have come to realize that Dylan just sees the world a bit different then we do. He needs things orderly and his way not because he is being difficult just because this is all he can handle. So I did what any mother would do and I asked for help until someone heard me, I went back to his pediatrician and I was able to get someone to observe him and she agreed that he did show some signs but we needed to get him to a neurologist so that they can evaluate him. After a lengthy process of calling doctors that accept our insurance and wait list, yes wait list. I finally got the call yesterday that Dylan will be seen by Florida Hospital Children's Neurologist in April!!!!!

I know April is still a long time from now, but when you sitting at home looking at your kid wondering why, wondering what you can do to help your child, its a relief. A relief to finally get some answers, finally get someone to tell me how I can help better understand my child, and how I can better help the world understand my child. All I want, what every mother wants for their children, is a fair shot in life!!!!  I feel this appointment will led me in the right direction, his pediatrician feels he is on the spectrum she used words, like highly functional and others, that at the time though gave me hope ,because someone was justifying my thoughts also gave me worries. I feel like this appointment will shed some light on things I guess because he is my child and sometimes I am at my wits end and can't wrap my head around how to help him, how when I tell him to try to calm himself and he looks at me with tears in his eyes and says " I can't calm down mommy" I wanna know how to help him.

I see all these amazing families  out there fighting the good fight, I am in awe of them, many I have featured on this very blog. So I know whatever they tell me in April, is not the end of the world, and it may not even be a surprise, but I feel well help me better navigate this world for my child and help me better understand him, when it's 6:30 in the morning, I just finished getting his sister ready for schools, and he doesn't want to put on his sweat pants because he deems them uncomfortable when they fit him just fine, or when he freaks out when his cars aren't all lined up or why he will only eat little Caesars pizza all the time, and it has to be fresh, and it can't be too hot or too cold, or all the other wonderful beautiful things that make him Dylan but sometimes work my last nerve.

I want the world to understand him, like we do, I want everyone to see how special he is, how funny he is and I want him to thrive. I guess that is what all parents want. I want that for all my kids, I guess with Dylan we just have to work a little harder, but as his mother, I won't stop fighting for him, trying to get answers to make his life easier.

I want to thank all the moms that I follow, through blogs, through facebook, Instagram, your strength, your honesty, your courage is what has helped me make decisions for him that I hope will help us on this journey. I thank you for being so honest. I thank you for being warrior moms!!!!

It truly does take a village, and after April I may call on that village more!!!

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