This is a post by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of a blog about her two children with autism, at autismmommytherapist.wordpress.com.
It seems impossible, but somehow you’ve crossed everything off your initial to-do list, and your son or daughter is set. Maybe he is now firmly ensconced in an Early Intervention program, and you’ve already booked the eight million school evaluations required to get him into a pre-school program. Perhaps your daughter is older and has just entered a classroom, spent a few weeks there and is doing well. You’ve dotted your I’s and crossed your T’s, and for once there’s no phone call to make, no appointment to schedule. You’ve gotten the help your child needs.
And perhaps as you’re enjoying a latte (which I hope you are, you deserve it), you wonder what’s next.
First of all, make sure you savor the moment. Take the time to celebrate your successful navigation of your state’s Early Intervention system or your school district’s IEP team, and give yourself about twenty hugs and buy yourself a little something fun.
Then take a deep breath, gird your loins, and move on to the next phase of your life with an autistic child.
I remember being at that phase, with my eldest son who is severely autistic being enrolled at three-and-a-half in a full day pre-school program and pregnant with my second child. While part of me wanted desperately to sit in bed all day and watch “Sex and the City” re-runs, I knew there was still a lot to do that I’d put off while trying to get the appropriate services for my child and dealing with our move to a new state. Here are ten things I did (or wish I’d done) after the ink dried on my son’s IEP.
1) No matter how exhausted you are, get your child out in the community. It was a struggle with us with Justin (I have the tiny little bitemarks on my body to prove it) but getting him out so he could have a repertoire of leisure activities was crucial to his happiness and to our family’s. It set him up for a lifetime of being able to try different things, which will set him in good stead when I’m no longer here to take him places. Yes, I’m always planning.
2) If you haven’t already done so, join a parent group and/or your school district’s special education PTA. You will make invaluable connections at both. Try to find parents of kids with your kid’s level of autism as you’re making friends. These people will be a wealth of information for you and a lifeline.
3) If you can afford it, hire an advocate to check out your child’s school program. A fresh set of eyes may see areas that need to improve, or may reassure you that they are doing all they can for your son or daughter. It’s always good to know one in case you need an advocate at an IEP meeting. If you’ve already met you won’t be scrambling to find one.
4) If possible, volunteer at school functions or offer to be a class mom. This is a great way to get to know your child’s teacher and your school’s administrators better. You may also make friends with other parents too.
5) No matter how difficult your child can be, take any offer of babysitting you can and get out. You need a night off from autism once in a while. Even if it’s for a few hours, a break will help.
6) Now that your child’s program is set tackle the big issues one at a time- perhaps it’s sleeping, or eating, or potty training. If your child is in a private school there may be a BCBA on staff who can help you. If not and you can afford it, consider hiring a BCBA from an agency. Pick an issue and prioritize.
7) Educate your friends and family as to what’s going on in your household. Perhaps you’ve been too tired up to this point to talk to people not in the “tribe” about what raising an autistic child is really like. It’s time to tell them and ask for the support you need, even if it’s just an ear to listen. My husband and I kept too much to ourselves, and if I could go back in time I’d be more open with everyone in our lives.
8) Make those doctor appointments for yourself that you’ve been putting off. Just do it.
9) Get involved in an autism walk in your community. It is so powerful to meet so many families like (and unlike) yours. It will give you strength.
10) I can’t stress this one enough- take care of yourself, not just your kid. Autism is a marathon, not a sprint. You owe it to yourself and your child to be whole, healthy, and happy. Do whatever it takes to get there.