New Year’s Resolutions for Special Needs Families

As parents and caretakers, we often forget about all the goals we should focus on when the needs of our children arise. Let’s face it, we may experience more emergency situations than most. It’s hard to get back to thinking about ‘big picture’ goals. Here are some of the average resolutions that are beneficial: eating healthier, putting away the phone at dinner, spend more time with family, take a vacation, earn more money, but you’re not average. This moves us forward into the first and most important goal of “self-care.”

Self-care for the caretaker – I know it is easier said than done, but when we suffer emotionally, mentally, physically, and financially our kids also suffer. The quality of care we need to provide is diminished. The answer is to prioritize a full night’s sleep, have an enjoyable conversation with friends or family, or schedule a personal therapy session. Consider establishing a regular schedule of therapy sessions, a date night with spouse/partner, and relax with a walk in the park. Try yoga, read a book, go fishing, painting, taking a long drive, and singing along with the radio as loud as you want. All of these activities can be done in as little as 30 minutes to an hour. If the kids are in school pick a day to give back to yourself. The house chores can wait. Take a mental health day, or a personal day and get out and do it!

When you start taking this time for yourself you may experience “caretaker guilt.”. It may feel uncomfortable. You will learn that you can simultaneously agree with two opposing thoughts that are playing tug of war. “I need to take care of myself in order to give the best care to my child” and “My time is needed for the long list of things I have on my to-do list”. Do your best to make it a priority to care for yourself. From my own experience, you will realize that you will feel a lot better. You will develop more patience during the stressful times. You cannot pour from an empty cup. When I started to take time out for myself it was a struggle. First, I made sleep a priority. I got Nathan to sleep all night, and I started doing the same for myself. I used to catch up on Netflix after the kids went to bed, but then I decided to turn off the television and get to bed. I started to have more energy! Next, I started with gentle exercise and Epsom salt baths for my sore muscles. Since implementing all of these practices, (along with a good multivitamin) I have not had an anxiety attack in over 4 years. I feel so much better!

Develop a plan for respite – Many countries, states, and even insurance providers can be very different when it comes to respite benefits. These benefits can also change from year to year. I encourage you to call your medical insurance provider or care coordinator to find out the exact details on the respite benefit. Do not rely on hearsay for your understanding. Applying for benefits may require a letter of medical necessity from your physician. Talk to your doctor, they may be able to provide the information you need for approval.

Cultivate friendships with the people that work with your loved one whether it be at school or in the after school/adult programs. They may be willing to provide care services on evenings or weekends so you can get a few hours away. Care.com has the category of ‘special needs’ care services. This might be helpful if there is a provider in your area.

Organize the mountain of paperwork – It is like having a part-time job as an office admin to take care of all of the paperwork. It is exhausting. There are all of the insurance forms, official diagnosis forms, therapy reviews every 6 months, IEP’s, evaluations and so much more. It is hard to keep track of it all. The filing cabinet is overflowing and you can hardly close it.

Today it is easier than ever to go digital. At little to no cost, you can scan and upload the important documents to websites like Google Drive, Dropbox or Box. Install the apps on your phone and they are with you at all times, password protected.

Start the year with safety! The new year is a fresh start for new family goals. Most importantly we want it to be safe. It really goes without saying but it can be very challenging when our kids do not understand danger. We have to plan ahead and work to try to prevent any harm coming to our children than most people. So we created “The Ultimate Safety Guide For Your Loved One With Special Needs.” You can download the guide here. In the guide, we feature products to secure your home and products to help when traveling. We also feature devices like AngelSense that is a wearable device that lets you track and locate your loved one at any time. It has a 1-way voice feature that lets you listen to your child’s surroundings. It can send alerts to your phone or apple watch.

Click here to order AngelSense.

The guide also features IfiNeedHelp – a special needs registry with emergency contact information with a scannable QR code on wearable products for those that may wander. You can get a discount on your first order when you use code: Angelman Today at check out.

The Ultimate Amazon Special Needs Shop also has a category dedicated to safety products that can be shopped here and save with Amazon Prime.

Read a book (or listen to an audiobook) about your child’s condition – Here are some suggestions: Angelman Syndrome: Communication, Educational, and Related Considerations by Stephen Calculator, Le syndrome d’Angelman: Regard sur une maladie neurogénétique rare (French Edition) by Anne Chateau.

Rethink therapies – Weekly therapy sessions are typically recommended and we schedule our lives around them. PT, OT, ST week after week, wash and repeat. But what do you do if your child has grown tired of it? Doesn’t like the facility or the staff. I have a few suggestions. They might make you cringe. They may make you think of the lost opportunity for skill building, but sometimes everyone just might need a break. Feel free to take time off from therapy. I also want to share some other therapy options that you may or may not have heard of; Anat Baniel Method – Neuromovement, Craniosacral therapy, Music therapy, Aquatic therapy, Hippotherapy, Hyperbaric Oxygen therapy (HBOT), Sensory Integration therapy, Massage therapy, and Chiropractic care.

Cheers to the New Year! I wish you much health and happiness! Take it one day at a time. Always remember you are doing the best you can, and every day is a fresh start.