|Walking in the neighborhood|
I talk with families often, and I've seen a pattern in the ones who have a difficult time gathering information and resources. They come to me frustrated, disenchanted and sometimes with the wrong information.
Here are my suggestions for finding resources and using them to best serve your child:
1. Ask the right people for assistance.
Lately, I've been talking with parents who can't find information about certain topics. When they tell me who they've asked, it's the incorrect person. The parents are frustrated because they thought the person should know the answer.
If you ask a doctor about community services for your child, it's not likely they will be connected to what's available. Unless they are personally invested in the special needs community, doctors won't have direct knowledge about what services are offered by the state or county.
Everyone's job is specialized these days. Each person has a slice of the information and it's up to you to access it. Not fair - yup! Annoying - definitely!
As a parent or family member with a child with disabilities, you've got to become a sleuth or investigative reporter. Google keywords to begin the search. Start with a local or national nonprofit organization that may have information about disabilities. Call and ask for the name of someone who will speak to you. Then continue on your quest.
It's time-consuming, energy-sucking and often disappointing. But when you do get to the right people and they are ready to help you, it will be worth it.
|Chilling in the group home's living room|
2. Set expectations based on new information.
My mom shared the story, "Welcome to Holland," by Emily Perl Kingsley when Ben was first diagnosed with a disability in 2004. It's about someone traveling to Italy, with all the expectations and excitement that go along with such a trip, but they arrive in Holland instead. Still a beautiful place, just not what they knew. If you're not familiar with the story, I recommend reading it.
3. Make decisions with all the information.
Be sure you have all the data before moving forward with a change or major decision. Double-check your sources and get any guidelines or policies in writing.
Separate fact from hearsay: When we learn about some service through a nonconfirmed source, it's smart to check it out firsthand. Make the call, send the email and check the website. False information can set you and your child back.
Evaluate the emotional issues and the practical plans that are in motion. After weighing the pros and cons, we made the decision to take Ben out of high school before he was 22 years old, the legal age he can stay in high school under IDEA.
I loved Ben's teacher and wasn't quite ready to let school go. I was sad he wouldn't see those classmates any longer. My reasons were more emotional than practical.
The real facts were I was getting him up at 5:30 a.m. every morning to get on the bus at 6 a.m. – the schedule was grueling. School holidays and teacher workdays were tough to get caregiver coverage. We love the day program because he has a one-on-one caregiver, is out in the community almost every day, and they have Ben on a successful toileting schedule.
After more research, we found out that if the day program didn't work out, Ben could return to school, as long as he wasn't 22 years old yet. Ben's been at the day program for over a year now.
4. Stay in the present and plan for the future.
Look for resources your child needs now but keep the next five years in mind. What do you want for your child? What do they want for themself? What's available to help your child create their own sense of accomplishment and success?
The same skills we've used to help our middle son get to college are the same ones we've used to get Ben into a day program and group home. Different goals and levels of support but both are thriving on their individual paths.
5. Join support groups and online communities.
I've found support through Facebook groups and random people I've met in the waiting room of a doctor's office. I can ask and answer questions, share my own stories and read about other experiences. It's a great way to connect in a positive environment to people who understand some of what you're going through.
6. Keep notes in one place.
First – take notes, write everything down, or record it (see note below). You will not remember everything that was said in a meeting or on a fact-finding mission.
When you make calls, send emails or collect business cards, keep everything in one place. Start a notebook and tape business cards inside.
Document calls and conversations: Who did you speak to, when did you speak and what's the plan for moving forward? Always get a phone number and email address for each person. Make a plan for follow-up.
Create a folder within your email for any email related to your child. If you record a conversation – check the laws in your state for recording conversations. A recorded Zoom meeting proved valuable last year with an important issue.
After any meeting, send a follow-up email thanking everyone and reviewing what was discussed and who is responsible for the next steps.
|Ben with his youngest brother Sean|
Your voicemails and emails will get lost, forgotten and skipped. Call again, resend an email or try another person.
Set up Boomerang on your email account – it will remind you to follow up with someone who did not respond to an email.
Always follow-up. It's not personal if someone doesn't get back to you. Everyone is busy and forgets. Remind them politely about the conversation and then ask again.