When Love Forces You Into The Spotlight

“woman and toddler in TP tent” by Hannah Olinger on Unsplash

5 Things I Would Never Do For Myself

If your child has special needs, you carry an extra burden, more so if you’re a single parent. If you’re normally a very shy person, like me, it will be a shock to find yourself thrust into the public spotlight. But moms and dads will do things for their children they’d never do for themselves.

Having a child with special needs changes you. It has to. Here’s your challenge, go solve it. If you look at the whole picture, you realize you just can’t do it. That’s why some parents will give their child up for adoption or abandon them. No judgement. I know that sudden terror of “Oh my God, what am I going to do? I don’t know anything about” — whatever your child’s diagnosis is.

The Toughest Year Of My Life

When my younger son was born, my husband was openly living with his girlfriend and coming ‘home’ on weekends. We were headed for divorce and I was already raising three children by myself. Then, I found out I was pregnant. When my younger son was born, he brought along a twin sister. Seven weeks premature, in distress. Later that day, I found out his diagnosis and my heart sank like a stone.

In The Midst of Battle, You Learn To Survive

That first year was a blur (largely due to severe sleep deprivation). Eventually, I learned to breathe. I found specialists. I began researching my son’s multiple disabilities and compiling notes and resource lists. I read the New York State Department of Education’s Commissioner’s Regulations on Special Education and began to memorize key passages. I would use them many times, in the years ahead. My heart slowly grew to accept the reality of raising five children on my own, of dealing with therapists round the clock, of fighting the local school district, of realizing my child had no one to fight for him except me. I learned, slowly, painfully, but I learned what I had to do, for him.

I learned to speak out. I learned to stand firm when others said “no.” I learned to insist, to quote the experts, to present the right documentation. I learned to wait, to write effective letters and emails. I learned to persevere.

Parenting a child with special needs is one of the toughest jobs on the planet, mostly because there is so little information, so little support. This was where I learned to ‘be the change you want to see in the world.’ I had no choice.

Other parents began asking “how did you get that therapist? how did you get the school to agree to those services?” I explained the regulations and started helping other families in our rural community.

“man facing woman on brown wall” by Alex J. Reyes on Unsplash

Five Essential Habits of Fearless Moms and Dads:

Here’s some tools I’ve found exceptionally useful in keeping my sanity while caring for my child. It’s a royal pain in the butt to gather this information and put it together, but you’ll absolutely be glad you did:

1. SET UP A CONTACT LIST AND UPDATE IT EVERY MONTH

Who do you contact the most? Your child’s teacher or residential house manager? Your primary care physician? Who’s on your personal support team? Make a list and keep it handy. Here’s some of the information on my child’s contact/info list for 2018:

  • TABS (Tracking and Billing Services) number (Required for all state services in New York State. Your state may call it something else.)
  • health insurance ID numbers, phone and fax numbers, for his private insurance and for Medicaid. Include the correct diagnosis codes used by the insurance companies and the addresses where I send claims and correspondence
  • contact info for pertinent state agencies
  • state and federal social security contacts, who we talk to, what department they’re in
  • my child’s care coordinator’s contact info
  • name and address & contact info for the medical center, primary care physician, dentist, dermatologist, etc.
  • alternative healthcare specialists
  • pharmacies, local and any online compounding pharmacies you use for your child’s medications or nutritional supplements
  • if you’re a legal guardian, your county’s surrogate’s court clerk, phone, fax, etc. and your child’s file number
  • contact info on any special supplies you order regularly
  • contact info for speech therapy, occupational therapy, assertive technology, etc.
  • if your child is in residential placement you’ll need contact information for the group home, including any cell numbers for the house manager and others, also numbers and names of day habilitation staff, job training staff, finance, nursing, etc.
  • does your child go to special programs like swimming, fitness, therapy dog training? You’ll want that contact information as well
  • keep track of contacts you use regularly but not that often, like summer camp. Do you have a deadline for registration each spring? Keep that in front of you, as a reminder to get your paperwork together

In short, list everything someone else would need if you weren’t in the picture and they had to step into your shoes. Get the essentials down on a one-page contact sheet. Every time a new service or contact person changes, update your contact sheet and get a copy of it to your spouse or standby guardian. Be prepared and you’ve got one less thing to worry about.

I keep my contact list in a special notebook that goes with me every time I leave the house. I keep online info in a file on my laptop, with a copy of this contact list so I can keep updating it. My current list is titled “Joe.contacts.9.2018.”

2. GET YOUR PAPERWORK TOGETHER

Keep a personal log or journal of everything you do for your child, who you spoke to and what their response was. If it’s an email, note that with the date, so you can find it when you need to.

When you make an appointment, it goes in your phone, but also in your daily log. Does your child need services he’s not getting? Here’s a way to keep track of those needs and where you’ve looked for them. Talk to your doctor, therapist, specialist. Find out what documentation you need to get that service. Not sure how to put that together? Find an advocate like me and work with them. Usually a doctor’s report saying your child has this or that diagnosis is sufficient to start the ball rolling on securing appropriate services.

If your child is over 18 and you’re taking care of all these things for him, you should be his legal guardian, by the way, and have your spouse, adult sibling or someone else your child trusts as a standby guardian, just in case. Again, if your child is over 18, this is very important. Don’t put it off! Call your county’s surrogate court clerk and ask for the paperwork. They’ll coach you through the process. You don’t need a lawyer to do it for you.

3. IF YOU DON’T PUT IT IN WRITING IT DIDN’T HAPPEN

Whatever you have to do today: call your special education chairperson, find out why the doctor’s report didn’t get sent to your school district, call the insurance company about a claim for your child’s therapies — note it on your daily log and email or text. If you have to call someone, ask for their email and follow up your conversation with a written “thank you for — .”

Put everything in writing. If you have an email for that contact person, use it. Even text counts. I figured out how to send texts to my computer and attach that (dated) document to an email, as proof written contact was made. And that written note, text or email is part of my son’s official correspondence, part of his file in that school district. It counts, so, document everything: every communication, every fact, every event, big or small. Make a note of it.

My only caveat, is to read over your emails before you send them, and if they’re the least bit emotional, tone it down. Read Pam and Pete Wright’s book, From Emotions To Advocacy for some helpful advice on presenting yourself as a poised, polite, professional advocate for your child. You are the expert on your child. You want people to take you seriously, so pull yourself together. You can do this.

When dealing with your insurance contacts, be sure to get the first name of whoever you spoke with and a call reference number or contact ID# for that conversation. You’ll have the date on your log. This ensures credibility and cooperation from your child’s insurance company.

4. STICK TO THE FACTS

Controlling your emotions is so important, and so difficult, it bears repeating: if you want your child’s school district or residential placement to take you seriously as an advocate, keep your emotions under control. It’s not easy, I know. If your child is nonverbal, like mine, people tend to ignore them and it’s hard to see your child hurt or neglected. But you’ve got to stick to the facts and leave out the emotion.

“Your child has been hurt.”

“Is he safe?”

“Yes.”

“Tell me exactly what happened.”

Stay calm and start taking notes. The person you’re communicating with can’t help you if you’re screaming at them. Find out exactly what happened, when and where it occurred, and who saw it. React later. Facts, timeline, witnesses, gather that first. Then, what steps can you take, to make sure it doesn’t happen again? Write it all down, sign and date it. Get it to the right people. Then go see your child and comfort him.

“selective focus photography of woman and boy” by Bruno Nascimento on Unsplash

5. LET IT GO

Then, at the end of the day, make a list of what you need to do tomorrow, and lay it aside. You’ve done all you could today. Don’t feel guilty, and stop worrying about all the things you child needs. Tomorrow is another day, and you’ll do the best you can. Until then, give yourself a break. Take 30 minutes to soak in a hot bath, sit down with a cup of tea, call a friend, or whatever you need to do to feel yourself again. Give your kids a hug and tell them you love them. Because that’s why you’re doing all this. You’re a good parent, you love your kids and tomorrow is another day.

Parenting a child with special needs is one of the toughest roads you’ll travel. But the good news is, if you can handle this challenge, you know you can handle just about anything. And, there’s a bonus: you can help others.

Life becomes real when you’re down there in the trenches. Just surviving another day is something to be proud of. Maybe your child will grow up to be independent, maybe he won’t. But you will. You’ll be just fine.

If you found this helpful, please share it with others. May it be a blessing to you, and to those you love.