Friday, February 1, 2013

Do you have a child with Special needs? Thing I feel you should know!

     Something has been on my mind for a long time now. I still don't know how to write it all down but I am going to try. So here it is.
     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.
     First I want to tell you that I understand the fear and the overwhelming amount of information that is being thrown at you. I also understand the flooded emotions that you must be feeling right now. Know you are not alone and that you have friend who are there to support you. I want you to know how special you are. For this child came into a family where you are the perfect parents to take care of them. There will be challenges, there will be fears, there will be overwhelming joys, and there will be times that you yourself will be tested beyond believe. A few tips to help you through some of the challenges! 
  • 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
I am realizing how important that is at this time. My Alex is going to have hip surgery at a different Hospital. He has to have a pediatric doctor check him out as well as a Neurologist, and other people. They need the records from his last health insurance doctor. I had a lot of them already because I have been keeping all his records. I didn't have some of his EKG and MRI a notes. It took about a week and a half to get. They can't clear him for surgery until they get to take a look at it. If you have it already then there is not much waiting time. I learned that the hard way.

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! 

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