Uncertain Times – March 2020
Our children are now home for an unknown period of time. For all parents, social distancing is stressful and disruptive. For parents of kids with special needs, social distancing is so much more than that. Our kids thrive on routine, they NEED various therapies, they require extra support for school work. Pulling those supports and services out from under them can have ramifications for years to come.
So what do we do? We can’t just give them busy work to do on their own. We often can’t just send them outside on their own. They require us to provide 1:1 support throughout the day, to be their para, to be their ABA/Physical/Occupational/Speech therapist, to be their teacher, to be their parent. We are call on now more than ever to be more than most.
Eventually, schools will open, kids will go back, and life will return to normal for most people. For us, our kids will have a difficult time transitioning back into every day life. Our lives will be disrupted for far longer than most. At that point, we will have to deal not only with our children returning to school and therapies, but with figuring out how to make up the time they lost, requesting compensatory services at school. At this point, there is no guidebook for how to make up the time or for the requirements of the school district under IDEA and we have no idea how this will all play out.
But for now, we are not alone. While we are social distancing we can keep tabs on each other and share ideas through social media. We will make our schedules, become teachers, therapists, and aides. We will take each day as it comes and we WILL get through this together.
Summer Balance – July 2019
Camp and ESY and therapies…oh my!
Summer is tough. Caregivers of children with disabilities are torn between having typical summer fun and making sure their children are staying on track with services and routine. It is easy to tell people to take time to enjoy the summer, but actually doing that is nearly impossible. As families with special needs, we don’t often have the opportunity to sleep late, go to the beach, swim, and relax (what does that even mean???).
Is there magical advice I can give you to enjoy the summer? No. Personally, I’m woken up by 5am, struggle until the start of ESY and/or camp, run around like crazy, pick up kids, struggle to bedtime, and collapse on the couch. Occasionally, we can carve out 10 minutes to turn on the sprinkler (after 30 minutes of setting it up, getting kids changed, etc). We might get to the beach once this summer…it will not be relaxing.
Here is the only advice I have…adjust your expectations. I used to look forward to the summer with great plans of enjoying time together, taking fun trips, doing exciting activities, and spending long days relaxing. Every time these expectations weren’t met it would be disappointing and stressful. With adjusted expectations, I consider it a win if we get that 10 minutes outside in the sprinkler. If half of the family gets to the beach, we’re doing well. Maybe we’ll roast some marshmallows and nobody will burn themselves.
If, at the end of summer, the kids go back to school with some summer memories, we’ve done a good job.
Navigating the Unexpected – January 25, 2018
Expect the unexpected. We’ve all heard that. We thought we understood what it meant. We think we’re prepared to deal with the unexpected.
Until the unexpected happens. A doctor sits us down and tells us we’re dealing with a diagnosis we didn’t see coming. Our own diagnosis or that of our children, whether the diagnosis is autism, cerebral palsy, a chromosome disorder, or any special needs diagnosis, throws us into a whole new world. In situations throughout life we’re told we can sink or swim, but really sinking isn’t an option in this circumstance. So we swim. We research, we learn, we find a community we didn’t know existed, and we swim.
I’ve been there. I’ve heard the unexpected diagnosis. More than once I’ve sat in that chair, heard the words, and felt the feelings. I’ve faced the unknown. I’ve done the research, I’ve learned, I’ve met people along the way that I never otherwise would have met, and I’m still swimming. As I swim, I’m grabbing hands along the way and helping others swim too.
First as a mother and now also as a disability advocate, I’ve learned how to navigate unexpected circumstances:
1. Listen to the doctors/therapists/teachers, but proceed with caution. The truth is, as helpful, caring, and intelligent these people may be, they do not know everything. They cannot see the future any better than you or I. A common saying is, “Once you’ve met one person with Autism, you’ve met one person with Autism”. This is true for any diagnosis. No two people are the same and no two circumstances are the same. Look ahead with hope and work hard.
2. Find your community. Not necessarily the one where you currently live or the one in which you were raised, although these communities are also vital. Find the people who get it, the ones who have also faced the unexpected. They might be in a local support group or they might be online. These are the people who are going to help you swim. These are the people who will give you resources, support, and a shoulder to cry on.
3. Ask for help when dealing with doctors, insurance companies, therapists, and schools. You are emotionally tied to your or your child’s diagnosis. I’ve been in these meetings in two capacities. As a mother, meeting with doctors and fighting for insurance coverage or educational services is difficult. Hearing all the things “wrong” with your child clouds your ability to think logically and strategically and to get what you need. As an advocate, meeting with doctors and fighting for insurance coverage or educational services on your behalf is my job. I am able to detach emotionally in order to think clearly and rationally.
4. Live this new life. Okay, so I give advice better than I take it, but this is the biggest way to navigate your unexpected circumstances. Your diagnosis doesn’t stop the rest of the world, so why should it stop yours? Sure, you’ll have rough days and those days will be harder than the average person can even imagine. But after you get through that start fresh. You have a new normal, a different normal than a lot of people, but this is your life. These are your circumstances.
No matter your diagnosis, there is a community of people willing to help you swim. As you learn to navigate this new world, you’ll be the one grabbing people’s hands and keeping them afloat.
Contact Lighted Path Consulting for advocacy help at firstname.lastname@example.org or (203)710-2855.
Diversity & Inclusion Training – August 7, 2016
All too often our options for recreation and children’s programs are limited simply due to the inability of facilitators to meet our children’s needs. Whether those needs are behavioral or related to accessibility and extra support, if a program is unable to understand and accommodate, our children are unable to participate fully or parents are uncomfortable allowing them to attend at all. Lighted Path has developed Diversity and Inclusion Training geared toward children’s programs and we’ve seen a great willingness of staff to understand how they can help participants with special needs.
Our training outlines different kinds of disabilities, common behaviors and reasons for those behaviors, accessibility barriers, and how to make accommodations to provide an inclusive environment. Our goal is to enhance awareness, understanding, and acceptance to enable all children to fully participate in recreation, library, and other programs.
Contact us at email@example.com or (203)710-2855 to schedule a Diversity and Inclusion Training!
Time to Check In – December 19, 2016
As we find ourselves facing another holiday season we need to take some time to check in with our students to see how this school year is going. Take this winter break to assess how well the student’s education plan is working and to brainstorm any changes that should be made for a successful year.
Parents often spend a lot of time asking questions of the school faculty and staff to find out if the student’s education plan is working. School staff can provide a lot of feedback, but I suggest asking the student directly. Here are some general questions to start the conversation:
- What subject/special do you like best and why? – This question sets you up to talk about different teaching styles and environments which may help your student keep interest and succeed.
- What is your least favorite part of the day? – Generalizing this question to apply to the entire school day can give you some useful information regarding social settings (lunch, recess, etc.) as well as academic difficulties.
- How would you change your day to make that most difficult part more enjoyable? – Allow the student to brainstorm with you to come up with some suggestions.
As students transition to middle school they should become more involved in decisions regarding their education, including attending their Planning and Placement Team meetings, as appropriate. Participation may take the form of full meeting attendance, partial attendance, or even a written statement. The goal is to teach our students how to advocate for themselves.
Lighted Path Consulting now offers Self-Advocacy Training/PPT Preparation sessions for students to empower them to become more involved in their own education, and ultimately, to give them the skills they’ll need throughout life. Contact us at firstname.lastname@example.org or (203)710-2855 for more information.
And So It Begins… – September 1, 2016
Here we go again. A new school year. A fresh start. But how do parents and guardians know education plans are being implemented appropriately? Don’t worry…we’ll guide you through.
First, touch base with all of the staff who work with the student. Don’t be shy. Send an email to introduce yourself and ask when they’ll be seeing your child. Don’t be afraid ask questions and to let them know that you are aware of the student’s services as they are listed in the education plan.
If you don’t hear back from a staff member, reach out again. Understand that there is a lot of information flowing in the beginning of the school year and there is a chance that an email was innocently lost. If you still don’t hear back be sure to bring it to the attention of a supervisor or the principal. Wait a couple of days between each email, but don’t let them get away without responding to you. You want to be clear that you are involved and will follow through on all requests.
Be patient with the scheduling. It can take a couple of weeks for all of the staff and service providers to get a schedule in place for your student. That does not mean that the child should go without services. It simply means that the schedule could change. Be sure to request that you are notified of any schedule changes.
If you are unhappy with the way the services are scheduled, speak up. Make sure that all service times and locations are in line with the education plan. In addition, make sure you are comfortable with the schedule. You may not want services stacked all on one day of the week. You may want some services delivered in the morning rather than the afternoon. The school is required to follow the education plan and as long as they are fulfilling those services, they may not be taking other factors into account. Bring your concerns to the attention of the team, be patient, and be willing to work with them. They will most likely work with you to accommodate your concerns.
The end goal is the student’s education and independence. Make sure you work together with your child’s team to create a service schedule which will best meet the student’s needs.
If you have any problems working with the team, contact us at (203)-710-2855 or email@example.com.
SUMMER IS COMING!!! – May 27, 2016
For most people the thought of summer brings about feelings of relief, excitement, and anticipation. For parents and caregivers of children with disabilities, summer often causes feelings of anxiety and stress. Many people with special needs thrive on routine and summer disrupts that routine. Even children who receive Extended School Year (ESY) services experience a significant change in school hours, days, staff, and peers. ESY only lasts so long and caregivers are left with the task of keeping some kind of schedule and keeping up with therapies while still allowing children to experience summer break.
Here are some simple tips to get through this summer:
- Plan ahead – In order to keep a schedule, you must first have a schedule. Start with a blank calendar and mark down all of the necessary appointments (ESY, therapies, doctors, etc.) and then pencil in any optional activities (camps, classes, parks).
- Be sure to leave some down time – Yes, create a schedule, but schedule in some down time each day. Find the amount of time that works best for the child and be sure to save that time so everyone can decompress.
- Have a backup plan – Nothing wreaks more havoc on a child who relies on knowing what to expect than a change in plans. Be prepared with a fail safe activity that you know the child will enjoy in case you need to replace anything that might haven been canceled or changed at the last minute.
- Keep those bed times and wake up times – This can be difficult because it is light out later at night, there may not be a reason to get up early each day, and sometimes our plans keep us up late (I’m looking at you, Fourth of July Fireworks!). Do the best you can…you’ll thank yourself when school starts again in the fall.
- Don’t be too hard on yourself – Kids don’t need to be entertained every second of every day. If you don’t get out as much as other families oh well. If you don’t see the latest movie worse things could happen.
Try to remember that having special needs changes things and sometimes complicates things, but it doesn’t take summer away from us. With the right planning and preparation, it can still be an enjoyable time to decompress and spend time together.
Welcome to PPT Season – March 15, 2016
The end of the school year is coming which means we are now in PPT season. As we review current education plans, prepare for summer services, and modify education plans for the next school year, we need to make sure all i’s are dotted and t’s are crossed. Need help? Be sure to follow these steps:
- Review the current education plan prior to the meeting – all too often this simple step is missed, which leaves parents unprepared to advocate effectively
- Write your own goals – come to the meeting with ideas for updated goals
- Know your rights – it never hurts to review parental rights before a PPT meeting
- Ask questions, share your concerns, and take your time! – a PPT is the perfect time to ask questions of the whole team and to make sure everyone knows your concerns and expectations
PPT meetings are for the student and should be steered by the parent or guardian and/or the student.
If you have questions or need help preparing for your upcoming PPT meeting, contact us at firstname.lastname@example.org or (203)710-2855 today!
Healthcare Advocacy – January 21, 2016
Our healthcare system can be confusing, complicated, and frustrating. Ideally, we would visit a healthcare provider, insurance would pay their part, we would get any equipment or medications we need and be on our way. Unfortunately, we do not live in an ideal world.
All too often, we hear about trouble getting insurance companies to pay for services, frustration in getting healthcare providers to follow up with necessary paperwork to get services covered, and problems getting medical records released in a timely manner. Lighted Path Consulting can help with all of these issues.
The key to healthcare advocacy is persistence. Lighted Path can put in the time and effort on your behalf and work with your insurance company and healthcare providers to get you what you need so you can focus on your health.
Contact email@example.com or (203)710-2855 for more information.
IEP Review – November 30, 2015
Now that students have settled in to the new school year, it is time to take a second look at education plans. Now is the perfect time to review goals and the student’s progress and make appropriate changes to implement for the rest of the school year. While Individualized Education Plans are required to be reviewed annually, it is best to review them at least twice a year.
First, look at how well your child has acclimated to his or her new classroom, peers, teachers, etc. Then review the current goals and accommodations to make sure they still align with what is best for your child in this new environment. If your child is making good progress, now is a great time to step up those goals rather than waiting until the end of the school year. If you feel your child needs more focus on a certain area, additional goals may be in order (again, why wait until spring?).
Lighted Path can provide an IEP review and recommendations to make sure your child’s education plan contains the most appropriate goals. Contact firstname.lastname@example.org or (203)710-2855 to set up your IEP review.
Transitioning Back to School – July 8, 2015
Many people look forward to the end of the school year. Having the kids home to relax, swim, play outside, and go on adventures excites parents. Both parents and children savor the break from school and wish summer lasted just a little longer. But what happens when that isn’t the case? For many parents of children with disabilities, summer break brings feelings of anxiety and stress. Lack of structure and change in routine, along with decreased services, can make summer very difficult for children and parents alike.
After the challenges of summer comes the often difficult transition back to school in the fall. New routines, new teachers, new schedules, and different classmates can cause some regression and disrupts everyone involved. When the right program is in place, this transition is much more smooth and the child settles into his new environment much more quickly and seamlessly than without the appropriate services and accommodations. Education plans are often set for the next school year in the spring, but a lot can change over the summer and the transition can become very difficult.
Lighted Path Consulting can help to facilitate a smooth transition and make sure the appropriate education program is in place for children with disabilities as they transition back into the school year.
Contact us at email@example.com or (203)710-2855.
The Importance of Professional Development – June 2, 2015
Lighted Path Consulting offers professional development for anyone who works with people with disabilities. A professional is an expert in his or her field, but not necessarily an expert in handling special needs. Learning about the difficulties and frustrations of people with disabilities is vital to understanding how a professional can best serve that population. Implementing some ideas to best meet special needs can make a client’s visit much more enjoyable and keep that client coming back.
Our professional development presentation will
- Provide detailed examples of all the different aspects of lives of people with disabilities.
- Help professionals to understand what kinds of things cause frustration and difficulty for people with special needs.
- Give helpful ideas to alleviate any stressful situations and meet the needs of clients.
- Allow professionals to best serve those with disabilities.
Lighted Path Consulting will help all professionals to be more understanding, compassionate, and helpful to people with disabilities.
Contact us at firstname.lastname@example.org or (203)710-2855 to set up your professional development presentation.