Navigating The Special Needs World: 4 Helpful Tips
1. Stay Organized.
So much of our lives are unknown right now. We feel chaotic and cluttered but it’s important to try to stay organized when it comes to your child with special needs. Try to keep every piece of paper that relates to your child’s disabilities, services, needs, schooling and so on. I wish I had kept more of Ben’s paperwork. We moved when he was 5 and some of his paperwork is now hard to get my hands on. For example, I had a formal document with Ben's diagnosis that was given to me when he was just a week old. I never thought I'd need that and didn't keep track of it. But, I did need it when it came time to apply for his Social Security benefits. We were able to contact his old pediatrician and request a copy. But, I wonder what would have happened if that Doctor had retired and closed his practice? Try to keep the current and historical papers readily accessible in print and digital format, if necessary. Occasionally review files and ensure that your paperwork is up to date.
2. Education is important.
Educate yourself. Once you enter the special needs world you have to educate yourself on a host of topics that other parents never encounter. It’s good to read as much as you can about your child’s diagnosis and be familiar with terminology relating to it. Learn about your rights, what you can and can’t get your child, any new therapies that might help your child, and lots more. Be willing to learn. Use other parents as a resource. If you don’t understand keep asking questions until you do. Remember you don’t have to accept anything a doctor, therapist or school official tells you – you are the best advocate for your child. It's acceptable to push back on the opinion's of others when you feel you have to.
Educate others. People are going to ask questions or make comments. You can serve your child by taking the time to respond with the appropriate information. Ignorance leads to fear. With understanding comes acceptance. We all dream of living in a world of acceptance. It starts with us!
3. Learn to have the guts to stand up for your child.
No appointments until next May? The school can’t possibly provide an aide? Insurance won’t cover therapies for children with developmental delays? When you encounter a no, don’t take that for an answer. Just keep asking , with a smile on your face. Remember persistence and determination are generally always rewarded and being kind goes a long way.
4. Remember to take care of yourself.
Parenting my typical kids is hard work but parenting my child with special needs is even harder. It is important to take care of yourself or you will burn out. You can not help your child until you meet your own needs. Remember just like on an airplane , you must ensure you have your oxygen mask on first, then help others. Do something that makes you happy. Get exercise, sleep, and eat well. Remember that without a healthy you , you can’t take care of someone else.
Being an advocate for your child is hard. I believe it’s one of the hardest jobs I have ever had. But it’s also the most rewarding. Believe me you can make a difference for your child and for other children. We can do this one step at a time.
Written by Leigh Ann Kaman
