In the special needs community, we, as parents, count on each other. We talk in lobbies and waiting rooms, we share names of helpful therapists, and sometimes we even cry on each other’s shoulders. In 14 years of parenting my autistic son, I’ve certainly done all of those things. But as a former social worker, I also find myself applying skills I used professionally to our personal lives. It’s helping us get better outcomes for our son and our whole family.
For all these reasons, I wanted to offer some tips I’ve learned along my journey, and I hope that they will help you along on yours.
Take a case manager attitude. Your child will have some wonderful doctors and therapists, but let’s face it: They’re not going to be there in the long run; you will. One way to advocate for your child is to keep track of their records: educational, legal, medical. That requires an organizational skillset that will come with practice. To get you started, try to find a parent training through your special needs resources, or take a class in case management.
Build your child’s medical file and bring it to appointments. If we go to a new doctor and they say, ‘We’ll have to get his records,” I don’t want them to have to wait. I have a portable thumb drive I can give to new doctors and a huge folder I keep at home. Keep a master list of which medications your child has tried, with dates and any reactions. I also have a document scanning app on my phone; I scan papers right in the doctor’s office and send them to an email address I set up for my son so that everything is kept digitally. It’s never too late to start this project; your pharmacy might be a quick resource to start a previous medications list, for example. Just start wherever you are, working backward as you work forward.
Go to the Family Cafe If you haven’t heard of it, it’s a huge disability conference held annually in Orlando, where those who have a disability are welcome — and I emphasize they feel welcome. It was so nice to gather information (even how to deduct specialty diet foods as a medical expense); plus if my son acted out, no one stared!
For those who are unable to attend, most of the presenters will post their PowerPoints or contact information on the Family Cafe site so that you can request their slides by email. Conference sessions include everything from parent empowerment to “sibshops” — workshops to help a brother or sister better understand their sibling’s diagnosis and how they can help.
Open an ABLE United account. I hear the same thing over and over, that having money will cause someone to get kicked out of their benefits. That’s not the case anymore and more people need to be aware! I am so grateful this has become available and legitimately circumvents that issue.
Don’t settle for the first answer. Doctors initially struggled to diagnose my child and at first listed him as having “bipolar disorder and/or Asperger’s.” Medications were inadequate, services were limited, school settings were toxic — it was a nightmare. But as I continued to observe my son and give feedback to doctors, they changed his diagnosis to autism spectrum disorder. It was amazing! Doors just started opening. So find another place, keep going, and do your own homework.
Practice self-care (but don’t use me as your example). I can list a ton of advice about self-care but that would be hypocrisy in the making! I will say that I’ve found a local church that takes special needs kids for a few hours once a month; if you can find something like that, by all means, take advantage. (I do.) I started exercising at a boot camp, and I can tell you there is nothing more therapeutic than taking one of those 20-pound medicine balls and throwing it on the ground. I also don’t watch the news; I’ve got enough negatives on my plate and try to avoid as many additional downers as possible.
Think creatively about your particular situation. Your unique problems will require your own unique answers. For example, I noticed huge improvements in my son’s behaviors after revising his diet. We cut out all food dyes and it made a remarkable difference. (If you, too, find Halloween and Easter challenging, check out naturalcandystore.com.) We also put keypad locks on our bedroom and pantry doors. That might sound extreme, but special needs parents understand the need to keep both their special needs child and uninformed guests away from certain foods and powerful medications. Don’t be afraid to experiment, keeping what works for you and abandoning the rest.
Talk, listen, research, repeat. Engage with other parents wherever you find them. I value our doctors, but I don’t think they always “get it” unless they also have a child with special needs. Get on Google, go to resource centers, join several Facebook groups. If I have a question about my son’s IEP, I can post it online. I’ll get some good information as well as some bad information that I have to filter out, but at least it’s other viewpoints.
Pick your battles and strike your balance. I used to love going to festivals and shopping on Black Friday, but I know my son’s triggers and avoid crowds as much as possible. Do I accept that his room is filthy, or do I get him to do his school work? I’ll take the latter, and I just give him lots of buckets in which he can stuff his clutter. Ultimately, I can’t change anything, but I can make things worse by huffing and puffing. I have to choose which battles to fight, and so do you.
Summer Alvarado is a former social worker and a mother of three, including a 14-year-old with autism spectrum disorder. She lives in Pace, Florida.
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