It’s the most wonderful time of the year 

Let it snow, let it snow, let it snow. Winter is back and here with a fury. My grandma, Mia, and I were supposed to go to the ballet today to see the Nutcracker but decided not to risk it, as bummed as we are I am happy to be safe and warm in the comfort of my home. As much as I do not enjoy the snow or cold I will admit I have so enjoyed this much needed snow day. I’m fighting a chest cold so I have been couch/bed bound, Havey and I have been taking it easy while Matt took Mia out to enjoy the winter wonderland. He brought me breakfast, then hot tea, and now said he is cooking dinner. What a much needed nice break. Hope you are all safe and sound enjoying your snow day!

It’s been a few weeks since I’ve written anything, and there’s a bit of rhyme to my reason. I know I have mentioned this before, but when I started my blog it took me months to gain the courage to post it. The thought of so many people being let into the most sensitive and vulnerable part of our lives was so intimidating to me. What was even scarier though was the thought of grown men and women passing judgement on my innocent 2 year old. In making our lives public it opened up the door for others to speculate, judge, and make comments about my child and our lives even though they have no actual interest in Haven or her journey. I am quite sure some people talk to make themselves feel relevant, or because they are so bored, upset, whatever it may be with their own miserable lives that they like to see the pain in others. Whatever it may be, we are, and I am not the one. I have grown leaps and bounds through the years, especially this last year but unfortunately I’m not to the point where I easily let others ill intent towards my family, especially my innocent children, roll of my back. I am a momma bear. Emphasis on BEAR. I am and forever will be quick to attack when it comes to my girls.

Last time I wrote I briefly touched on our visit at Riley’s but wanted to elaborate more for my family who keeps up with this. Let me start by saying I am blown away by all that Riley’s is. So many times at the doctors and specialists around here I am so uncomfortable and frustrated because they do not know how to interact with Haven. They are so taken aback with her meltdowns and resistance, its just a miserable experience for everyone. Not one time during our 3 hour visit did I feel that way. Haven was her normal self and they were all smiles. The people that work there are meant for kiddos. Our specialist was amazing, very encouraging and caring. She referred us to their Autism Center there, along with their Insomnia clinic, a sleep psychiatrist and a psychologist. A very good start to figuring our girl out. We head back down soon for an overnight sleep study, then Haven will get her tonsils out. More than likely an inpatient surgery due to her sleep apnea and the general issues autistic children have with procedures. Mia will also have her tonsils out as soon as we get cardiac clearance from all of her doctors. We can’t catch a break around here.

Haven added Physical Therapy to her already very long list of therapies last week. She did extremely well for her first session, especially for having Speech and Occupational beforehand. We have been working on exercise’s at home to help stop her toe walking and to help regulate her body and balance. Afterwards we toured our first ABA center, for those that don’t know what ABA is it stands for Applied Behavioral Analysis Therapy. It is mainly used to treat Autistic patients. From the start I have been pretty much against ABA, but as Haven has gone down hill in some areas our doctors and specialists have pushed us towards it. I try to be open to anything, so I set up a tour with one In Fort Wayne that was supposed to be more relaxed and more preschool based. What a nightmare, I left in tears and terrified of the life my daughter has before her. The reason I was so against ABA in the first place was because it can be very demanding and extreme. Up to 40 hours a week, many adults that did ABA as a child now have PTSD due to such extreme measures to change them. That’s exactly how the Behavioral director there made me feel. She looked at my child as a broken Autistic kid that they were going to fix. They would rewire Haven, and she would learn all the correct things “normal children” do. I am not trying to change or rewire Haven. She is not broken. She is a brilliant, vibrant child, that thinks and acts differently that societies definition of “normal” and I wouldn’t change her for the world. What is normal anyways? Who makes up these guidelines? I want to let my children be children. The ones God planned for them to be. I understand moving forward that we are going to have to work with Haven on a lot of things but that just wasn’t the fit for us. We are not giving up though, a sweet friend reached out with a resource and we will continue to tour centers and hopefully find a good fit. 

We are all so excited for Christmas to come. Pixie (our elf) has returned and the girls are loving it. Mia packed her in a jar to take to Adams for the weekend, and she was extra silly there. For us I don’t like the elf so much for the good and bad factor of it but more for how excited Mia gets every morning. There is nothing like the magic Christmas brings to children, it makes all the crazy and chaos worth it. We made a trip to the Autism Center last Sunday for their silent santa, although the girls weren’t a big fan of santa they loved the other activities and Haven had so much fun playing and interacting with kiddos like her. I wish there was more activities around here designed for kids like Haven.

It’s so crazy this year is coming to an end. I can honestly say this has been the hardest year of my life. I have learned so much about my girls, myself, and Matt and I. I feel like we’ve all really changed as a whole. The things I used to care about are miniscule thoughts now. My worries are so much different. Things I never thought I’d have to worry about fill my mind now. I’ve gotten through days I didn’t think I could. I’ve felt my heart physically break as they gave us news and predictions about Haven that would change our lives forever. I have cried more tears than the last 24 years combined. I’ve fought a hard fight to get Haven what she needs and for people to hear our voices. We have a lot of tough days and choices ahead of us but I truly think we are headed in the right direction and for that I’m ever grateful. My views on the world and people around me are ever changing. I’ve been lucky enough to have gained and grown in some awesome relationships and friendships. I have lost some on the way as well unfortunately. You really find during tough times who’s on your team and who isn’t. I have no time for fair weather people, albeit friends, family, or acquaintances. I am happy to see this year coming to an end and look forward to the New Year ahead. I wish all of you a Merry Christmas with those you love and peace and joy as we enter the New Year. 




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