Things I wish I knew before becoming a SN Parent.

 I love my daughter and this life as a special needs parent has taught me so much more than I ever thought it would. I've become more patient (okay, a little more) understanding, informed, strong and just about every positive trait you can think of. Sadly, I've also become more aware of the ignorance and hate towards special needs children and people, be it neurological like Naysa or Autism like a good friends incredible son. People get sent my way and come to me when they find out or meet someone whose child is SN and I love being able to help and guide. I tell them the things I wish I knew before this journey in hopes it will be of use.

1.) ADVOCATE ADVOCATE ADVOCATE!!!!
       Being apart of this SN world means YOU will be the reason your child prospers or fails. You need to do your research on treatments, therapies and anything else that will give your child the best chance. Do not let doctors bully you into doing things you are not comfortable with, i.e vaccinations. If you let yourself live in the stage of denial (it's okay for a little while, we've all been there) you are wasting precious time that could have been used to help your child thrive. Remember, no one knows your child like you you do. If aren't satisfied with a therapist, doctor or nurse...get a new one! It is your right as a parent to ensure your child has the best care.

2.) Ignorance Is Everywhere & People Are Cruel.
     People fear what they do not understand, so they chose to remain ignorant. It is your job to educate them. They will stare, make rude comments (most of the time unknowingly) whisper and give looks. Don't stand for it! There are a number of ways you can approach the situation depending on what was said/done and depending on your personality. I tend to be more on a blunt side, if you can believe it ;) I've actually been thinking about getting business like cards printed with her conditions, a snarky comment and the link to my blog and email address for questions. Most recently I caught a man just staring at her head and said "Isn't she beautiful? She will two in March and can guarantee she's been through a hell of a lot more than you and I combined." That leads to questions, which I am happy to answer. Majority of these instances end well and they walk away feeling enlightened. If they are just rude and don't want to listen, then kindly flip them the bird and be on your merry way with your little miracle :) If you don't educate and teach acceptance...who will?

3.) Pity Party's Are OKAY! 
    This isn't the life you pictured. You didn't expect to have countless doctor visits, therapies, medications to be administered at precise times. You never thought you would have to watch your child struggle to do simple tasks or work so hard to learn his ABC's. It's OKAY to feel angry, resentful, sad, scared....You've been dealt an unfair hand, it's what you do with it that matters. Three years into this life changing diagnosis and I still break down, get angry and I'm sure I always will. The key is to let out your frustrations in a healthy way...kick box, take a bath, cry it out and move on. You can't stay in this pity party funk forever, sorry friend!

4.) Do Not Compare Your Child
    I know I know....easier said than done, I struggle with this myself. It's human nature to compare and breaking the habit is no easy feat. The fact is, every kiddo, neurotypical or not, is different. No one child develops the same way or rate as another. The process is just as unique as our kids. A child with Spina Bifida cannot be compared to another who has Autism, just as a preemie cannot be compared to a full term. It's just not the same and they are developing the way their bodies and minds are meant to. It's hard seeing a friends kid Naysa's age walking and talking while she still struggles with learning to crawl and sit up but I remind myself of Naysa's injuries and all that she CAN do. Focus on the positives and be thankful for the ability your baby has & remember it can ALWAYS be worse. Embrace and cherish what you have. 

5.) Stay Connected To Other SN Families.
     Sadly, after Naysa was born I lost a few "friends" who just didn't know how to handle my new role as a SN parent. God help them if they ever become SN parents themselves, & if they do, I will be right here to support them. Because that's what we do in the SN community. It's important to have other friends who are in similar situations, who understand what it's like as a special needs parent and the daily struggles we face. It's equally as important to keep the good friends you had pre-diagnosis. It not only gives you a healthy sense of what was and keeps you motivated, but it educates them and believe it or not....makes them better people too. My friends now think twice before judging a child throwing a tantrum because he may be on the spectrum or have a chemical imbalance, they cringe when they hear the word "retard" or "retarded" and some have even taken it upon themselves to educate others, & I love them for it. A good support group is necessary, you can't do this alone and you shouldn't have to.