Wednesday, October 21, 2009

Rights of Parents of Children with Special Needs!

While I was at a support group meeting for parents of children with special needs* last night I was given a handout that got me thinking. And since it is National Spina Bifida Awareness month I thought I would share my thoughts with you! If you want to find out more about SB make sure you check out THIS post and THIS one too! Remember that knowledge is power, so pass it on, share with your friends and get educated about these wonderful people so you can better share your lives with them!

*for those of you local who are interested I will share more about this group at the end of this post!

So, on to this hand out that got me thinking. It was an article written by Sol Gordon, Director of The Institute For Family Research and Education, Syracuse. In it Mr Gordon said "Parents are acutely aware of their responsibilities to provide for their offspring, but they are seldom aware of the rights they also have as just plain people and as a parent of a child who has a delay or special needs condition." This quote and some of the examples that he gave got me to thinking about what MY rights are as a special needs mom, as an individual, as just plain old me! So here is my take on this subject!

Parents need the freedom to:

~KNOW that you have done the best that you can. It's okay to look at a situation or circumstances and know that, although things may not be perfect or what you hoped for, when you have done the best that you can. You did it! Congratulations. Celebrate, or at least be content. Most times, the best that you can do is good enough!

~Enjoy life as intensely as possible, even though you have a child with special needs. Things may look different and you might have to think outside of the box, but that doesn't mean you can't enjoy it all! Look for joy, peace and grace in the little things.

~It's okay to have hostile or negative thoughts once in a while. Own the fact that life is not always a rose garden, but don't let it control who you are. Have the thoughts, then let them fly free. Holding them will only make you negative and no one will want to be around you.

~Enjoy you alone time. It's hard, there's guilt, but work past it and ENJOY your alone time!

~Have a week vacation yearly without the children, have dates, celebrate weekends away, and make time to enhance your marriage. I know... I need to WORK on this one, but I know it's importance and have made a goal to make it a reality in my life!

~Feel free to say at times you don't want to talk about your child's concerns! You don't have to go into detail or deep with everyone who asks. Sometimes it is healthier to just say "We are living it and doing fine!", after all it's the truth but it doesn't bog you down.

~Tell your child that you will ALWAYS love them, but it's okay to tell them that you don't always like certain things that they do. Honesty is best modeled not taught. Your kids may be confused in the beginning, but they will appreciate it and row from it latter.

~Devote as much time as you want to or need to to the special needs, but allow yourself the freedom to take a break, step away and come back at it another time.

~Tell teachers and other professionals what you REALLY feel about the job that they are doing. Be sure to do it in love and with grace, but feel free to speak your mind, negative or positive. So many times professionals only hear the complaints, make sure you give out praises where praise is due.

~Tell people about your child's progress and achievements with REAL pride. They ARE different, but that should never take away from how hard they work for their accomplishments.

~Have hobbies, personal interests and alone time. Be YOU.

~Spend a little extra money on yourself even though you feel you can't afford it. Martyred parents are seldom appreciated by anyone, least of all their children.

~Fill your life with love, peace, patients, joy, grace, kindness, goodness faithfulness and self control. Remember to get your fruits in everyday!

If you are a parent of a special child what would you add?

*And for those of you special parents that are local, do you know about the new support group offered for ALL parents of special needs children? It is a great group, a safe and intimate place to share your joys, frustrations, fears and accomplishments. It is also a great way to share information, ask questions and seek new directions. We meet once a month on the third Tuesday in South County (AG area). Please let me know if you would like more info or would like to join us!