I have been at this for sometime now that my son is a teenager. I have been that parent (and still am) that will listen and ask other parents for ideas or advice on new therapies or therapists, treatments, doctors, etc.… I see parent groups on social media sites and/or the Internet support groups give their recommendations or share resources that they have used. It certainly helps having that support but parents really need to make decisions that are best for their unique situations.
As a parent, I understand first hand that we do the best we can for our children that I will mention did NOT COME WITH A MANUAL, UGH! Making decisions or hiring different professionals to work with our children is by no means an easy task. As a matter of fact, it is one of the most difficult decisions to make. Everyone has an opinion about everything and some are extremists. Everyone has their personal experiences or their children have had experiences that then dictate their opinion on the matter. We have to all realize that we all have different expectations of our children, we all perceive our children’s strengths and weaknesses in different ways, and to be totally honest, we are not always realistic with our children’s capabilities. Now before you tell me where to go, read me out. We must ALWAYS set the bar high, we must always push our children to reach their full potential, and we must NEVER give up!
Unfortunately, our children and all that comes with having a disability can be advantageous to some. We hear of a new type of therapy that costs thousands of dollars, a new medication or diet that cures our children, a school that sounds to good to be true, or the best… a pill that makes our children verbal. I have seen and heard it all. As parents, we are open to trying because who knows? We will never know unless we try. The amount of money that is spent and hours put in is inconceivable.
Advocates, the “A” word. Where do I begin? I feel that the word “advocate” has been taken way to far. The stories I hear are insane. Since when did becoming an advocate mean disrespectful, unprofessional, degrading, knowing it all, and why must they YELL? The fee is what? Why would anyone want to go into a situation and make it worse for a student? Why would anyone want to have a good teacher or therapist reconsider his or her career? The kicker here is, does the “advocate” even know the child? Now, before you yell at me again, read me out! I have been in situations where mistakes have been made, environments that were not conducive for a student that adjustments needed to be made, classroom changes were non-negotiable, and IEP’s were poorly written and/or not being followed but this can all be rectified with understanding student and parental rights, understanding the child’s needs, and working collaboratively with the team. You can respectfully agree to disagree and try to work out a solution. When that is not possible, you exercise your rights as a parent to file for a mediation and/or due process.
Having a child with a disability keeps me on my toes 24/7. His future and his success is my #1 concern. Because of this, of course I am forever stressed. I have a lifelong situation with my child and all I want is the very best for him. I do not and should not have to constantly fight! I want to effectively “advocate” for him and create the best damn team possible so my son reaches his full potential. So my son can be as independent as possible. I will spoil all that work with my son, make them feel beyond appreciated, and support them as they support him. This has worked since I started this journey and this has helped many families that I have the opportunity to work with.
Do your homework and research before bringing anyone on your team. Make sure everyone understands your goals and that all work together. Try to take things day by day and celebrate the accomplishments when possible. Life is to short and our children need us around as long as possible. Be healthy and smile, our children not only need that but feel that.
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