My head is swirling. The legal size notepad in front of me is filled with a list of phone numbers that I need to call or should have called already. I dial the first number: voicemail. The second is a wrong number. The third only accepts intakes on Wednesday. Autism is not covered by the fourth program. There is at least a 6 month, 2 year, several year wait list for the fifth, sixth, and seventh numbers. After calling the ninth number I am informed that Caroline will be considered for services after I fill out a 10 page application and send a copy of all of Caroline’s medical and educational records. There is an answer at the tenth number; unfortunately, the doctor is not accepting new patients. And finally the eleventh number the doctor is taking new patients but they are scheduling for August. With that I decide that to take a break—today is probably not the day to call the insurance company to discuss the meaning of “medical necessity”.
Being a parent of a child with special needs requires great organization and communication skills as well as a high level of self-awareness. Ohio is the fourth state that I have established care for Caroline. Along the way I learned a few tips and tricks.
10 (Hopefully) Helpful Tips and Tricks from Caroline's Mom
Get your documents organized—kids with special needs generate a LOT of paper between medical and educational records; applications for programs, and medical bills. I keep a copy of ALL of Caroline’s medical records, yes all of them. They are now in a binder and sorted by specialist and then by date…many of them our scanned and saved electronically. This saves a lot of time when applying for government programs because almost every program requires documentation of diagnosis to determine eligibility. The binder that sits next the medical records binder holds every educational document we receive. The third holds medical bills---paid bills are filed in the back with a note including the date they were paid, in the front I keep all unpaid medical bills filed by amount (let’s just say this binder is top heavy). In each binder, I keep a piece of notebook paper so I can document every conversation I have minimally I document: who I spoke with, the date and time, and a brief summary of the call. I hope to move this documentation to a Google Doc but right now the hard copy is nice to have.
- Find a Social Worker. Social workers are the best way to find out about services and programs that can benefit your child. In Ohio, Milestones (a local nonprofit) connected me with this information. When I contacted them I didn’t beat around the bush. I explained that my daughter has autism, failure to thrive, global developmental delays, is nonverbal, requires nutritional support from a g-tube, is medically involved (has had several surgeries) and our insurance does not cover most of her treatment. I also share off the bat that my husband and I make a decent living (though more than half of it devoted to paying for Caroline’s care) so we are not eligible for programs that consider income. Why waste time…I cut right to the chase. I also make sure to ask about respite. I know it seems like a luxury but next to the wait list for waivers the wait list for respite is the longest.
- Find One Good Therapist and One Good Doctor. One, only one? Yes, because that one doctor and one therapist will connect you with other amazing therapists and doctors. Don’t stress about finding a whole team at once.
- Make a Memorable First Impression at Your Child’s School. Let them know you are organized, articulate, and informed. When it comes to getting services a first impression goes a long way. I like to bring all my records and copies of advocacy materials. I also make a habit of citing recent court cases and any bad publicity the school has received. I know it is low but again information is your friend. I received some great advice from a neighbor (who I never met in San Antonio) about how to prepare for an IEP her tips and the knowledge I have gained being married to a high school principal make me pretty effective at getting Caroline services but I still haven’t cracked the code to getting enough services.
- Don’t Be Afraid to Accept Help. One of the reasons that I developed such close friendships in San Antonio so quickly is because when people offered to help I said yes. And when they said I would like to help but I am not sure what I can do, I would say it would be great if you could XXXXX...It took a long time before I would ask for help but my life is a lot better now. By the way I am looking for a volunteer administrative assistant…if you know anyone who is interested message me.
- Create Task Lists and Consider Using Google Docs. So when someone does offers to help I know what needs to be done. I put everything on the list and share it with John, my husband. That way, when either of us has a free moment we can work on the list and mark it complete.
- Find a Friend. Someone who isn’t judgmental but is available to catch up after bedtime. It helps if she likes wine.
- Know When To Kill with Kindness and When to Have an Edge. I am super, super nice to anyone connecting me with services. I try to strike a balance between infuriated and understanding when talking to the insurance company—I mean it is not the customer service reps fault that the company chooses not pay for any of Caroline’s services.
- Know When to Take a Break. Raising a child with special needs is exhausting. I have learned the only way that I am any good to anyone is when I take time for myself. And sometimes, after a couple of really bad days—I just take a week off. I don’t call the insurance company, I don’t do any filing, I don’t make any new appointments---I just maintain. And that is okay—I am Caroline’s mom but even Caroline’s mom is only human.
- Make Time to Be a Parent, First. This was really hard for me. I spent so much time trying to find the right specialist, fighting with the insurance company, and reinforcing therapy that I wasn’t bonding with my daughter. Don’t forget to be a parent—yes part of parenting a child with special needs is organizing and advocating but the most important part is being present your child’s life.
These are tips that work for me. Believe me, I know my processes and lessons don’t apply to every parent who has a child with special needs but if they help one parent, I will be happy. What tips and tricks do you use to organize your life and keep your sanity while parenting a child with special needs?
#11. Take a moment to be proud of the kind of Mom you are. What you do on a daily basis to maintain your normal would break a great many good Moms.
ReplyDeleteI imagine that list is helpful to those who live with much of your situation. For me, I cried. The weight of what you carry must be enormous. And yet, you wrote it out, clearly, with detail and humor. It's nice to think that every parent would do what you do if they had to. But that is just not reality.
Caroline has an extraordinary family who fights for her. If only every child had that. So, remember #11.
This is excellent advice, especially the take time to be a parent and find one good therapist. It's true- many of us will find time to work with a child (even if our caseloads are bursting at the seams) if a respected colleague asks.
ReplyDeleteI'm a huge advocate of the families I work with step back from "special needs parenting" and embrace plan old parenting any time they can. Sometimes, just being a mom and having some snuggle time or giggles or whatever is so much more important than getting in those extra ten minutes of home program. After all, don't we do all this therapy so our children are capable of fully participating in the world around them?