To the family with a new diagnosis,
Our world is full of acronyms. My husband is a member of the military and they have an
acronym for everything. I was becoming quite conversant with them. Having a child with special needs opens up a whole new world of acronyms. ASD, ADHD, FAPE, IEP, FERPA, IDEA are just a very few. When your child receives a medical diagnosis, you are automatically put in a mode where you need to play catch up. You don't know anything about it most of the time but now you will live, eat and breathe it for the next while as you struggle to find out everything about it that you can.
You go through every stage of grief there is. Frequently multiple times. This is natural. Your spouse will too and frequently not in the same way. You mourn the loss of your perfect child and the dreams that you had for them that now may or may not come true. You are now worried about the future in a different way. What will the future look like for my child? Will there be a future?
You find yourself suddenly impatient with parents around you when your friends are complaining that they spend all the time shuttling children to one after school activity to the next. You'd be happy if yours could actually do an activity. Instead you spend all your time at therapies, doctors appointments and playing catch up on everything you missed while you were at said appointments.
It may not be tomorrow, and it may not be next week. But it does get better. You find the places for the answers you need. You find supports, sometimes it takes creativity, and you could always use more.
It takes time and frequently you need to become a forensic detective, but eventually the pieces start falling together and you find the supports necessary to not just survive but thrive. So hold on. Ask questions. Keep searching. Sometimes you have to invent or lobby for the answer. It does get better. Breathe. Most importantly, take time for you. As they say on the airplane- "Put on your oxygen mask first."
You will come out of this a better, smarter, more compassionate person.
This is a guest post by Calleen Petersen. She can be contacted at lollielean@hotmail.com.
Labels: Letters
