You are your child's best advocate. No one will fight harder or longer in the face of never-ending challenges and occasional bouts of discouragement. Here are my tips for being the best advocate for your child with special needs.
Trust your instincts
Feel like a therapist isn't a good match? It's OK to break up! When it comes to doing what feels right for your child, following your instincts is critical. That said, we parents (typically) are not the experts so raise your concerns and be open to suggestions. It's never an easy conversation to start, but professionals understand you're a parent and should want you to feel comfortable with a chosen approach.
Build a team
Build a trusted roster of professionals, and take your role as team manager seriously. Sometimes players must be cut from the team, because even though they're very nice and you have a history of sharing accomplishments, they're simply no longer effective in what you hired them to do. Cut!
Stand up for your child respectfully, but never apologize for disagreeing with someone about what's best for your child. A specialist may be the subject matter expert, but you are the expert on your own child. If you're not comfortable, get a second opinion. It's your right.
Identify real friends
You will need real, true friends. You will have dark moments when you need a shoulder, a vat of wine, a shopping excursion or just a laugh. Make sure they know how important their friendship is, and that you value the ability to be honest, even when it's ugly. You are human. Accept it.
You will be frustrated, angry and bitter at the world. It's OK. Just lash out at something that can't feel, or sue you for assault. Go to a park and kick a tree (you can hug it later). Go to the garage and pound an old cushion. Get it out of your system, then go back to your child and go forward.
Whenever you're around other families with children who have special needs, compare notes. What's their favorite website for the best toys for children with special needs? Why do they love their speech therapist so much? I heard about something called play therapy at dinner with other moms of children with Down syndrome. One of our most cherished Team Charlie members is the play therapist who joined our team just one week after that dinner conversation.
People will say hurtful, stupid things that will fall on your stunned ears. Take a moment. Take a breath. Then respond. You don't have to be hurtful, but you should be honest. "I need you to know that when you said X, it hurt me because of Y." Don't look for an apology, look for understanding. Move on. If someone is a repeat offender, send them to friend prison and cut ties!
You will make mistakes that seemed like the best choice at the time. They were. You will always make decisions based on what you feel is best for your child -- and there will always be times when you reflect on those choices with a degree of regret. Let go. Move forward. Your mistake was made with love and good intentions.
Bask in the moments
After months of therapy and practice and repetition and prayers and silent deals with the devil, you will look up one day to witness your child accomplishing something you hadn't even considered. Take a moment. Take a breath. Rejoice. Hug. Smile and give kisses. You can Facebook about it later. In the moment, put your cheek as close as possible to your child's cheek and exude pride.