What they don’t tell you about being a special needs momma 

Friday afternoon, what usually is an afternoon of in home speech therapy, instead entailed me holding my phone with my shoulder, while talking to Haven’s neurologist on how to meet my special needs child’s need’s during her sedation and procedures, all while holding a bag full of clothes for poor Mia to puke in with one arm, and driving down Main St in Auburn, rushing to the doctor with the other arm. A year and a half ago that would have been my most stressful day ever, I would have done it but I probably would of lost my shit while doing so. This year, it’s just another day. The never ending chaos doesn’t effect me like It used to, I’m used to it, honestly I expect it. I’m a realist, I don’t like to candy coat things, I beg my doctors to always give me 100% the good, the bad, and the ugly. If I  know whats coming and what to expect I am capable of handling it. I hate the unknown. I’ve had to find a balance between my need to be a realist and my new(ish) found role of being a special needs mom. Our world is ever changing, its hard to always know what’s going to happen next and I’m learning, well trying to at least, to go with the flow when I have to. Most days I have no choice. Being a special needs mom changes you, I wish someone would have warned me, written me a manual or something.

I am not the person I was a year ago. I am not the mother, friend, or girlfriend I was a year ago. My outlook on life has changed. My priorities, my people, my wants, needs, and goals. They have all changed. This life has hardened me in many ways, yet I’m weaker in others. I no longer cry when I should, yet find myself unconsolable with other things. Patience. Oh patience, it has never been my strong point, I still struggle with it but its about a thousand percent better than its ever been. Better with my girls that is and the curveballs life continues to throw at us. However it tends to lack with others, the stupidity, the complaining about mundane things I wish were my only concern, I have no patience for it. This has become especially prevalent with other moms, friends and other parents. Some days I want to shake people, wake up, walk a day, what a good child you have, you have it SO good. Your parents/in laws always want the kids and it seems overbearing? I am so jealous. I’d kill for that. Your child said momma 200 times today and it’s driving you crazy? LUCKY YOU. I’ve prayed, cried, and begged for over a year to hear those words. What I wouldn’t do to have your concerns. My new found role has driven me far from those I used to love and I’m becoming more okay with that. It’s hard to sit in a room with people that don’t get it. It’s hard to listen to others complain about things that I can only wish for. I recently had coffee with another mom who has a little girl with Autism and it’s easily one of the most refreshing things I’ve done in SO long. She got it, and me, like no one has. We shared a lot of the same worries and fears, hopes, and dreams, and annoyances and dissatisfaction with the people and world around us. Autistic girls are so much different than Autistic boys and although others mean the best they don’t always get that. She got that. She gets the struggle to have friends when you’re a special needs mom. She just got it all. We got each other. Very few people in my life get it. Thankful God led me to someone who gets it in a time when I needed it most. 

I wish someone would have warned me how scary and intimidating things would get once school comes into the picture. Tomorrow is Havens ISP and transititon into preschool meeting and I’m absolutely dreading it. They sent me a 12 page questionaire book I had to fill out prior and I was in awe at how ridiculous some of the questions are. Who makes these things?! Our therapist has warned that the School is going to push me into placing having in the special needs preschool. I’ll probably end up stepping on some toes when I push back with a big fat no. I’m so over society and those in educations need to constantly push my child to conform to the worlds idea of normal or to toss her away in a special needs class. Haven is very high functioning in most areas and children like her are not a one size fits all thing. Haven tends to mimick those around her, when we’re with Lyla she babbles and does baby squeals. If I stick her in a class surrounded by lower functioning children, there is no doubt in my mind she will regress and I’ll be Damned if I let that happen. We have worked entirely too hard For that to happen. I am actively looking for a possible preschool environment that will be a good fit for Haven. If anyone has any recommendations on area programs or preschools I would love to hear. If I don’t find a fit we are both comfortable with I’m fully prepared to hold Haven for a year. 

My quick two cents on the political craziness that has taken over the world. I have never been real into politics, but having two girls growing up in this world, one disabled has made me more aware and involved then ever before. You are entitled to your opinion. I am entitled to mine. I will try my hardest to be respectful with mine and my posting but I will not apologize for my fears and concerns with our presidents ignorance when it comes to those disabled and his newly elected Secretary of Educations stance on where disabled and special needs children do and do not belong in the school system. I am truly fearful for Havens future with those currently in office. I don’t care where you stand, I am convinced if you had a special needs child you’d get it and share in those fears. It’d make you want to march, and scream it from the roof tops. If you are friends or family of mine and don’t at least have an afterthought or concern About this but claim to have love for Haven, we are probably better off without you. I’ve said it before and I’ll say it again, I refuse to stand behind those who do not stand behind us.

Thanks to those who have checked in on Mia. Today has been rough, the pain comes and goes in waves but overall she has done well. She’s a tough cookie. We will be couch bound for the week Dreaming of spring break and the beach.

As always thanks for following our journey, love and light to you and yours. 
xoxo Taylor  



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