Susan Senator

I was once like you are now
and I know it isn’t easy
–Cat Stevens

I remember my very first parent support group, hosted by Greater Boston Association for Retarded Citizens and the Autism Support Center in Danvers. I braved snowstorms worse than last night’s to get to my meetings. Back then, Pre-Internet, the live, face-to-face parent support group was my lifeline. List-serve? Who knew? YahooGroup? Sounds like a bunch of whiskey-drinkin’ good ole’ boys. No, no, back then we had to trudge through three feet of snow uphill both ways to get our autism support.

One of the best things about that group was this dad, who had a teenage autistic son. When he spoke, I felt the ground shake with his hallowed vision. For this dad knew what The Future was like, and I needed to know that. I wanted to meet his kid, befriend him, and live in their house so that I would know what was maybe going to happen for Nat, what it would feel like, look like. I was starved for information that would lead me to Do Right By Nat, that big goal in the sky.

Some of my readers feel that way about me, because Nat is 18. I completely understand this feeling. Instead of worrying about will-he-ever-be-toilet-trained, or why-can’t-my-school-system-buy-a-clue, Ned and I are worrying about stuff like how’s-Nat-going-to-be-able-to-work, really work-if-he-occasionally-erupts-over-the-wrong-lights-being-on, or where-and-with-whom-is Nat-going-to-live? Or, how much money are we going to need for him, and how does that work? What is Social Security in terms of disability? How does he get it? Instead of wondering how much Nat will be able to talk, we now know: it is quirky and sometimes difficult to understand, sometimes not at all accurate. Which is in some ways what it was when he was four! But somehow, I understand now just how much he knows, and I am not worried in that respect.

Advice Tidbit#1: Development Happens. We also found that NOT ALL DEVELOPMENT OCCURS WITHIN THE FIRST THREE TO FIVE YEARS OF LIFE, Goddammit!!!!!! Sure, Early Intervention is a necessity, but if it doesn’t happen for your child by the time he is five, that doesn’t mean much! Nat developed a lot of his current language ability at 8. We really developed a great connection with him when he was 12.

Advice Tidbit #1a: Quit worrying about “normal.” To some mysterious degree, our kids are who they are. What they need is for us to educate them fully; to support their challenges; and then to accept them for exactly who they are. To love them with high expectations, but not with the aim of “making them normal.” (Whatever that is.)

Advice tidbit #2: Find out if there is money to prevent institutionalization in your state NOW and get on the waiting list. In our state, we have a special grant, the DOE-DMR grant, which provides a family with around $20,000 a year to pay for staff who can help prevent residential placement. We only applied for this grant two years ago, and we are still 40th on the waiting list. If your child is anything like Natty, you can almost always make the case that you are one step away from residential. But take notes, create paper evidence of your struggles at home. You never know when you will need it. School notebooks that go home are good sources of evidence of your child’s struggles.

Advice tidbit #3: Look beyond your school system for help. You should all be very familiar with your state agencies by now. You should know who your liaison is, and be in touch regularly, at least annually. You should be finding out if there is respite money or home support available for whatever diagnosis you can manage to apply to your child. If you don’t understand what they are telling you, ask again. You are not stupid; the system is.

Advice tidbit #4: Find the good organizations, the non-profits, that exist to help. I mean Special Olympics, Best Buddies, church and synagogue groups, community service programs at your local high school.

Advice tidbit #5: Parks and Recreation Departments have pretty good resources in terms of fun for kids. By law, they should be making reasonable accommodations for yours. If your Parks and Rec do not offer programs that are accommodating, complain. I believe it is IDEA, ADA, Title 1 or Title 9 that I am referring to. Perhaps your Special Education Director at your school department can create a liaison program offering activities for your kid. In our town, several parents got together and hired an outside agency to run a recreation program for kids like Nat, in partnership with the Parks and Rec.

Advice tidbit #6: Adolescence Happens. Grab them and hug them and smell them as much as you can while they’re little. While doing so, blank your mind and just feel the love, inhale it, bask in it. If all we get is tiny tender moments every day, rather than one big grand old time, then — take it from me — do not squander them. Being able to carry and embrace a child is a gift and IT DOESN’T LAST.

Take your time, think a lot.
Think of everything you’ve got. I will if you will!