15 New Years Resolutions for Special Needs Parents

15 New Years Resolutions for

Special Needs Parents

With the new year truly underway, I have had a lot of thought on what kind of “New Years Resolutions” I want to focus on for this year, even though we are almost 2 months in. It is as most would expect, get healthier, declutter, read more, etc, etc. But as I was deciding what to put on my “list” I began thinking of what some productive goals would be to make in the realm of being a Special Needs Parent. It can be hard to make hard and fast goals with a special needs child (i.e. walk by X age, talk by X date ). Just last year really put my ambition for these types of goals for Sage to the test. Sage had a really hard 2023 with a lot of regression, disappointments, and struggles, so my idea of a goal for her is to be happy and continue to progress in whatever way that happens.

With the struggles of 2023 still looming in my mind, I switched my focus onto what are some goals that I can make for me as a Special Needs Parent, something I can control within myself. In my desire to find appropriate things I looked up some special needs pages that gave me some great ideas of what I want our year to focus on, but to make them more relatable for our situation. Most of these are more of a Mindset shift than anything else, but I know for me I need to be constantly aware of how I am feeling and thinking in order to change some of the intrusive negative thoughts that I experience and focus more on the good happening every day.

 1. Celebrate all the Small Successes

When focusing on only the “big” milestones, it can get discouraging when your child struggles to meet those skills. We have learned over the past 2.5 years to find all the small things to be happy about and celebrate. Sage is working on what most people would say are “basic” skills, but for her they are a huge stride forward when she even gets close to achieving a new skill. She has been working on rolling over, sitting independently, standing with support, and bearing weight through her arms.

Just a few days ago we were working with her on rolling, and she did most of one roll all by herself! Clover and I got so excited with her and showed her how amazing it was. She kept doing it pretty good for a while. She has also been slowly increasing the time she will tolerate standing and I can see how much stronger she is getting. An outsider looking in, these would seem small, but to our family we couldn’t be happier about her small success already this New year. We get to celebrate all the smallest of milestones, or more like inchstones, that she achieves, and we are so happy to get to celebrate her!

 2. Make the time to DECOMPRESS.

Even if it is at 1 AM, take that time to clear your mind and relax. I have created a somewhat bad habit of staying up way later than anyone else in my house because that is the only time of day where I have time truly to myself. Everyone else is sleeping so I can watch what I want, write, read, or mindlessly scroll on Social Media. It has been good for me to have the time where no one needs me, to just decompress and unwind. I am working on letting myself not feel bad about staying up late, because I do need sleep, but it has become even more important to find any time I can to just relax because during the day that is a rare thing. Decompressing as a caregiver to a special needs child is so important, so you are later able to be there more fully for your child and family.

3. Soak in the sweet moments.

These moments won’t last forever, even if sometimes they feel that way, but take the time to truly be present in the moment with your child. Even if it on a hard day, and all they want is you to snuggle with them, do it!

Sage has good days and bad days, but on the bad days all she wants is to be held and cuddled. Currently, we are weaning a pretty harsh medication, so she has been having more rough seizures and she has needed a lot more love and cuddles. It can be hard to not worry about all the things that need done or the underlying reason for her bad days, but just enjoying the snuggles, being there for her, I know that is exactly where I need to be.

Sage isn’t the only one that we get to soak in the moments with, Clover also shows us these amazing moments. She is such an amazing sister to Sage and will get her to giggle even when it is the worst day. After I have Sage in bed if Clover is still up, she will come and sit with me and just soak in the cuddles. Days can be hard, but these little moments happen more often than I usually notice, so I strive to be in the moment and soak in the memories with both of my girls.

4. Take the Picture, Make the memory.

With these fragile kids, you really never know what the future can hold, so I say, make those memories. Take pictures of every moment with these sweet kids.

I am a perpetual picture taker; I have thousands in my phone and even more on other memory cards. I have never regretting taking a picture, but I have regretted not taking them…. I have noticed the times I take less pictures are usually the harder times, the bad days, but even those days I wish I had more pictures to look back on. I also struggle to have pictures with me in them, so I try to take selfies with my girls as much as I can and have my husband take them every once in a while as well.

I don’t think you can have too many pictures of your life and family, as long as you are still involved and present as well. So, take that picture and make those memories; enjoy this time with your kids and family.

5. Express yourself.

 I think we are hardwired to try to stay strong, but if you really let yourself feel it all, every once in a    while, it can be a cleansing and rejuvenating thing. I often hear from people “You are so strong; I don’t know how you do it” or “You always have such a positive view of things”. I am here to tell you, on the outside, what we show people, is not how our day to day tends to be. We have all had our meltdowns, or felt it all a little too much, and that is not a bad thing. Occasionally losing it can be a good, cleansing release for us. Then to quote Bluey:

Have a little cry...

Pick yourself up…

Dust yourself off...

And keep going!”

  

6. Organize all your paperwork.

It may seem tedious, but it is essential to have all your child’s paperwork in an easy to find location and organized. I have been trying to organize all of our important paperwork for not only Sage, but all of our family. When you have a medially complex child it can be very essential to have all paperwork on hand and easily accessible. You never know when or why you may need diagnosis paperwork, history of medications, insurance coverage, previous therapists or medical procedures.

Get a simple filing cabinet and files and keep the papers in a safe secure place. I am still working on it, too.  

7. Re-evaluate Therapies and medications.

With your child’s doctors and Therapists, talk about next steps and what you should expect this year to look like. I have struggled with switching therapists for Sage. I have gotten attached to each of her previous ones an it is hard to make a change. This year Sage will be turning 3 years old this year, and because of that she is being transitioned out of the Infant Toddler Program that provides in-home Occupational Therapy. So now we will have to find a new OT and also need to find a new Speech and Feeding specialist.

We are already adjusting Sage’s medications and looking for new options to try. It can be hard to evaluate the pros and cons of different medications, diets, or even possible surgeries. Finding the correct therapies and medications can make a world of difference in your child’s life and your life as well. Research what will be the best fit and most beneficial for your child.

 8. Unplug and be Present.

Being present is so important for you and your child’s well-being. This is one that I need to work on a lot this year. I find myself using my devices as a way to “unplug” from the stresses of day-to-day life, especially the hard days, but it isn’t a very lasting or a fulfilling way of getting the relief I seek. I have found that I find a lot more sense of accomplishment and fulfillment in my days when I don’t have my phone on me or have constant noise going. During those moments, I can completely engage with my girls and be more productive in daily tasks or goals. The constant input is a hard habit to break, and it really requires a lot of purposeful action, but the more you do it the easier it will be the next time.

9. Research possible programs and resources you haven’t yet tried or need to retry.

After years of navigating the Special Needs and Rare Disease world there are still programs that I just recently discovered, and I am sure there are some I have yet to hear about yet. The best way to find these programs is usually by searching your state website disability resources, national disability programs, therapists or doctors, and other special needs parents.

Some of the programs we have found are:

o   Kaite Beckett Program (through Medicaid)

o   Infant Toddler Program (until the child is 3 years old)

o   Social Security Income (income eligibility required)

o   MTM (helps pay for trips to doctor and therapy appointments)

o   Therapies- PT, OT, Speech, Feeding Therapy, Hippotherapy, Swim Therapy

o   Make a Wish Foundation (for critically ill children over 2 ½ years old)

o   DD Services (through Medicaid to help with respite care and therapy items in home)

o   Various grants to help with medical bills or medical/therapy equipment (usually very specific to certain disorders or conditions)

o   Parent Pay as Caregiver (still researching this one)

We haven’t had the opportunity to use all of these services and I am sure there are more out there that we will discover as our needs and situation change. Research what your specific state/area has to offer your child and you may be surprised at how much you could find.

10. Don’t be scared to Speak up and Advocate for your child. Be BOLD.

It has taken a lot for me to learn that I am truly my child’s best Advocate. No one, not any specialist or doctor will even know more about my child than I do. I am the one who is with her 24/7 and know how she reacts to things and ultimately what is best for her. I have learned over the past few years to speak up for her and not be worried about what the doctors think of me. If they truly want what is best for her, they will take my concerns seriously. As your child’s parent you have just as much say in your child treatment, medications, therapies, and overall healthcare goals.

11.   Don’t be ashamed to ask for help.

Help can come in lots of forms, and it can be so hard to admit that we can’t do it all on our own. Learning to ask, is the hardest thing. I want to be able to do it all on my own, and I wish I was able to, but that is just not the case. I will often just ask someone to come over and “help” with something and that gives me the ambition I need to get it done.

I am not the point that I am willing to leave Sage with anyone beside my husband, but just having someone to watch/play with Clover can be exactly what we all need in that moment. Just knowing there is someone willing to be there for us, can be the biggest type of help I could receive.

12.  Do something new, plan a new fun activity that your child can participate in.

During the summer it seems to be a lot easier to find activities that are inclusive, but during the winter we have to get more creative. In the winter we try to go to story time at our local library weekly, we go to museums, and we spend a lot of time dong activities at home. Then summer time they have splash pads, trails we can walk with a stroller, we can go to parks, and spend time in our garden/yard. I have been trying to learn about other local inclusive activities or events that are put on in the community and I encourage anyone with a special needs child to do the same. Keep looking for those activities and, if needs be, creating your experiences for your child.

 13.  Laugh more, find more joy in the small things.

Take a step back and find joy in your day to day. I admit this is something that can be very hard when you are in the thick of it. This also ties into celebrating the small successes. When you focus more on the small moments you will find that joy and be able to fully embrace the here and now.

We have personally had a rough 2023, so when we do have the chance to laugh it feel so much more freeing. Just the past few weeks Sage has started to giggle more and more and her smiles feel so amazing! These small moments are that much sweeter after the rough patches.

14.    Give yourself the credit you deserve.

It can be easy to see how much you are falling short, but step back and see all the things you are doing well. It is easy to look around and see the piles of laundry, unwashed dishes, or toys covering the floor and know you just simply do not have the energy or motivation to do much to remedy the situation. I have been there, and still have days (or weeks) that the stress of the day to day feels too heavy to do more than the minimum.  

Right after we started getting Sage’s diagnoses, I was in a bad place emotionally and mentally. It was bad enough I could barely do any of the day-to-day tasks and all I focused on was taking care of my girls and making sure they were okay. Brandon took up the slack of the day-to-day tasks, which I am so grateful to have him doing all of this with me. I had to learn to give myself grace and know that I was doing the most important thing by loving and snuggling my girls when they needed it and that was more important than the dishes or laundry.

15.    Exercise with your child.

Your child is most likely in therapy, which is their exercise, and it is important for you to also get healthy and fit so that you can continue to support them as they grow and their needs change. As Sage gets bigger, I am reminded that I need to keep my body fit so I can play and do therapies with her.

It can be a simple thing to exercise with your child. There are many options of what you can do: workout videos at home, going for a walk/run with a stroller, going on bike rides with a bike trailer, and even gardening or working in the yard are just a few of the ones we plan to do this coming year. We have been lucky enough to be gifted a nice bike trailer that will give Sage the support she needs and all the other exercise options you can use a simple stroller. If your child is mobile, you can easily involve them in any of these activities.

I have found that the simpler and more easily accessible the activity is, the more likely I am to do it. So, find something that works for you and your situation and just get out and do it!

These are just a few of the ways I hope to better myself in 2024 and become the mom both my girls need me to be, but also become the me I am striving to become. New Years Resolutions should be more than a to do list of things you wish to accomplish; they should be achievable goals that stretch you and will better you and your child. Happy New Year, and I hope these suggestions help you make the most of 2024 with your Special Child.