If you are a parent that found out you have a child with special needs, here is a bit of information that I have learned over the years that I would like to share with you.
- You are their voice! When it comes to Doctors, Therapist, Teachers, Family Member. Mama and Papa Bear hast to come out. I myself am not a confrontational person. I don't like to make waves. I don't like to be the loud parent that everyone talks about. But when it comes to my Child... it take every ounce of me to do so!
- You have the right to your child's medical records! Get a file folder and label files to keep things in order. One for IEP's, Dr's Appointment, Neurologist, geneticist, tests, file for all the Doctors your child has or had in the past. Even if you have to pay for them it is a good idea to always have these records
Doctors have a lot on their plate and to have all that information ahead of time speeds up the process as well as helps them out! They are not lazy! They just have more Patience than they should have. I know it is a lot. My Son has a big case full of information with his first 5 years of life.
- Take someone with you to your appointment If you can! There is going to be a lot of information said at these appointment and it can be overwhelming. If you have someone there that could take notes of what the doctors says. An extra pair of ears as well as someone who can ask the doctors some questions that you may not think about at the time because you are so emotional drained and your mind is trying to make sense of it all. If you can't have a person with you take a tape recorder. It may seem silly but it does help a lot to be able to go home and re-read notes or slowly hear what the doctor as said.
- If you can get into a support group. There is just so much that your friends can help you and support you with. They are amazing and wonderful people and can support you only to a point. Find other people who are going through the same thing or similar as you. They may know information that could help you more than you know it.
- Give your self a break! It is very important to take care of yourself as well. You will need those breaks away from the stress and the decisions you have to make. Go for coffee with a friend, a jog, go to the movies. I myself love to craft... or should I say make cards for other people. In my last post, I don't have time for that but I know I need to do something for myself so. I am blogging and writing tutorials I found on line and it is fulfilling for me.
- Most Important: Communicate with your significant other if you have one!! Its going to be tough if you have someone who has a hard time dealing with all of this. Keep each other informed if anything because it is both your child. Make the tough decisions together . Having a child with special needs can put a strain on a marriage. I know this because I am living through it. Everyone handle these situations differently and we need to respect that as well.
In my next post I will tell you Alex's Story. I hope that this helps anyone who is reading this. If it give you some help and some hope! You are Amazing people! With an Amazing journey a head of you! Your child was given to you for a reason! Know and believe that! You may not like the situation but the love you have for your child is just enough to help them through this journey called life!