Because I've chosen to make our story public, and especially because of the PDD-NOS videos I made of Anna on YouTube, I get a lot of emails from other parents who have questions or want to say thank you (you're welcome, btw). Recently, a woman contacted me about a little girl she is adopting from another country that has microcephaly (basically this means a small head circumference... Anna's head circumference fell off the chart at 6 months of age and hasn't been back on since), cerebral palsy and other issues. She is trying to find out as much as possible about the potential challenges of parenting a child with special needs and is reaching out to other parents for support. I was so honored to be contacted and wrote up some initial advice for her specific to cognitive challenges and thought it might be useful to share here. I wish her the best of luck in her adoption and know she will be blessed beyond measure for opening her heart and home to this special little girl.
Let's see, a few things come to mind that you should do when parenting a child with a cognitive disability. First, contact your state- or county-run program of services for mental health and mental retardation (MHMR). We live in Texas and ours is funded through the state and run by the county. They recently changed their name from MHMR to Integral Care to keep up with the (thankfully) progressive movement to ban the "R" word. We have decades-long wait lists for services so the sooner you can get your child signed up, the better. We first took Anna to MHMR when she was five; she was given some IQ tests to verify eligibility and we were assigned a caseworker. She meets with us monthly. We get community service and respite hours where networked providers can come to our home and work with Anna on specific goals... anything from eating in a restaurant, to academic goals, to self care, to a break for us. There have been a lot of changes in services lately and we've lost quite a bit of hours. Luckily my mom is a huge support and has contracted with the state to be a network provider so she is our respite person (and she lives next door!). That is a very good thing for continuity and convenience. Don't hesitate to ask family for additional support.
Up until age 3, each state offers early intervention programs to help with speech therapy, occupational and physical therapy, social skills, and academic skills. Contact your local ECI (early childhood intervention) office to schedule an intake as soon as you as you have concerns. They will get you set up with home visits to start on some goals. If you have good insurance, you should also get private ST, PT, and/or OT. If your child has sensory integration dysfunction, they can get specialized therapy with an OT to help with that. Until your child starts school, you can really make an impact with therapy.
As soon as your child is 3, contact your local school district to see if they offer a PPCD program (preschool program for children with disabilities). Between the ages of 3-5, the school district will take over where ECI leaves off... continuing therapy and placing your child in a preschool program geared to help maximize potential. You'll soon become familiar with the IEP (individualized education program); the IEP will dictate academic and social goals for the school district to work on from age 5 on.
I also encourage you to join a support board. iVillage is where I got my start and I met the most incredible group of mothers whose children have similar issues. I started with a child hypotonia board, added developmental delays, and finally added the seizure support board after Anna's issue got more complex. This group of women I've known since Anna was 15 months old and she is now 9. We actually meet once a year in person for a retreat without husbands or children. It's so nice to be with other moms who "get" it.
I have lots of resources, so if you need more information or know any parents who may be looking for information, please don't hesitate to contact me. My email is email@example.com. Good luck to all of my sisters in motherhood parenting children with special needs.