The Best Advice While Raising a Child with Special Needs

I found one common theme in the beautiful 30-year journey I have had so far with my daughter, and that is that all the best advice I ever received, was from other parents who have children with special needs.

There are so many others who may try to help, and I believe their intent is well-meaning; however, without walking this path it is impossible for others to truly know the full scope of what we live. Not just the trials, battles, and wounds, but most importantly the triumphs, joys, amazing relationships, and unconditional love. 

It is my hope that this blog will help some of you new parents and caregivers just starting out on this journey. At the beginning of my journey, I would tend to lean on and live by the advice of doctors, teachers, friends, and relatives. While their advice was sometimes good, and helpful, I always felt something about it just didn’t feel complete.

Once my daughter started school, dance class, and Special Olympics, I met so many parents!

There were 5 of us that met weekly for coffee while our children were in dance class. At Special Olympics, there was much time for conversation while waiting and watching the games.

There is a different kind of connection that we have. It’s a natural understanding and compassion. There are a lot of areas for obtaining advice, and I suggest using all of them, I know I did. At the same time, I would seek out those who really knew what it was like to be in my shoes.

The best school teachers my daughter had were those who had their own children with special needs. All her teachers were great, I am grateful for all of them; however, there was just something different, and more at ease, with the teachers who were on the same journey.

There was a lot of advice that I received from other parents that I would have never known about if not for them.

This blog is not to talk about specific advice, because there is so much information and help we all need, but to let others know that other parents can be, and most often are, our best guides.

We can all use help to take care of our children with special needs. Some of us parents are single, and others have challenges that require help. I strongly suggest you get to know the other parents along this journey.

Some of them will stay and some will go, but all of them just might touch your heart and take some weight off your shoulders. Some of the other parents might become your best friends and confidants.

I understand what “It takes a tribe” means.

Life with our special needs children takes a tribe. God bless all of you wonderful parents and caregivers. I know this journey can be exhausting, but it can also be beautiful and heartwarming. The more help and guidance you have the more you can enjoy the heartwarming events.

Some of the simplest advice can make a major difference in our children’s lives. This photo is of my daughter with her weighted blanket. Another parent recommended and made this blanket. It made a big difference in her life when her moods elevated, or she just felt anxious.

We Were Given These Children: A Letter of Encouragement

When I saw this tree, I could not help but remember God’s Word.  “He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.” Jeremiah 17:8

Being a parent can have its challenges for sure. However, being a parent or caregiver for a child with a disability takes challenges to a different level.

You were given this child or children…you, and no one else. You are whom they need and whom they depend on. Not only are you brave, but you also have the soul to truly love them even on their hard days.

You are motivated to give your child everything they need.

It takes a heart of courage to wake up every morning and do it all over again, yet you do it, every single day! I know you are exhausted most days, but somehow you pull through and take care of the needs of another human being, even before your own needs.

The best part is that you find such a deep joy in this child that God has placed in your care. God trusted you enough with one, or more, of his special children, and I know you make Him proud.

I also know, some days it doesn’t feel like anyone might be proud of us. We have some downright ugly days that we feel like such a failure. God does not see us that way. Remember to let go of past so-called mistakes. I do not believe there are true mistakes if we learn from them.

If we are feeling depressed that means we most likely are living in the past. If we are feeling stressed and anxious that means we are most likely living in the future. Live in peace in the now and enjoy your days with these special children.

Life is fleeting, too fleeting to live with any regrets.

These children with special needs look to you, to your smile, to your gentle touch, and your ability to maintain your patience, even during the most difficult of days. You make their life OK. You are the bright spot in their day, their comfort, and their strength. You are theirs and they are yours.

I write this blog because I know all too well how challenging life is for you. I too have a child with special needs. I know what most of you go through, as all our children have different levels of disability. At the end of the day, we all have commonalities on this journey. 

I know my daughter delights when I smile at her, when I hold her hand, and tell her how awesome she is. The joy she has brought into my life could never be replaced.  

To be fair, I must admit there have been many days I have wanted to give up, but this is not something we can just give up on. I know that is just my exhausted brain thinking and truly not where my heart is.

My heart loves this child with all my being. Don’t be too hard on yourself when there are days you want to give up, or you don’t feel like you can “do this” anymore. Say only kind, encouraging words to yourself.

My goal here is to encourage all of you.

. Especially during this time of year. I know there is a lot more stress in my home during the holiday season. My daughter started getting excited about Christmas around the time the stores started putting up Christmas things, which as we all know is before Thanksgiving, and some start around Halloween.

My daughter’s excitement turns into a serious case of stress and anxiety. One would think being excited isn’t a big deal. She is looking forward to a fun day; however, her excitement can turn into a meltdown at any moment.

I know there are many of you that can relate to what I am saying. We all have our own ways of helping our children through this exciting stress. For me, I find redirecting as soon as I see any hint of a mood. We put all our fun events on the calendar. When she is overly excited, looking at the calendar helps her cope.

Don’t forget to find some time for yourself during the holiday season.

. I know this can be challenging, especially for some of you that do not have someone to help you. For those of you that do not have help of any kind, I pray that some comes your way.

I believe God can provide whatever we need. I like to thank God in advance for providing whatever need it is I am asking Him for. Try that for yourself. Thank God for providing the right people, trustworthy people that will love your child and put their care and needs above all else.

Believe in yourself, and on the days you are questioning yourself, remember that YOU HAVE GOT THIS, MY FRIEND!!! Be strong, like a tree planted by the water.

Merry Christmas and Happy New Year from Emma and me!

The Path of a Caregiver: Surviving the Holidays

“Your word is a lamp to my feet and a light for my path” Psalm 119:105

Is there a person that relies on you for all their needs, most of them, or even just some of them? Either way, if you are a caregiver, you will have answered yes to this.

The holidays are busy enough, but when someone is a caregiver, life seems very overwhelming. One might become exhausted early into December and most especially before Christmas.

How can we enjoy the holidays and still be the caregiver our person needs us to be?

I know this is easier said than done for most of us, but you must take time for yourself. If you don’t it will only lead to burnout and exhaustion. This can lead to illness. We as humans need to rest and recuperate.

Keep an organized calendar so you can plan accordingly and look ahead at what you need to accomplish that day. Most importantly, try not to think too much about the days ahead. One day at a time and one step at a time.

Use your time wisely and listen to what your gut and your body are telling you. If you know you need a nap, and you have the opportunity to do so, take one.

Talk to others, and tell people close to you that you really need help. Maybe give several people some things that you could use help with. This way you are not putting too much on one person. If you don’t tell anyone you need help, there is no way for them to know. I know it would be nice if others just knew our needs and came to our rescue. I don’t like to ask for help, but I do so I can keep my head above the weeds.

It takes a tribe.

I love the way tribal Indians lived. A child is not raised up only by their parents.

For example: From the article “Family Life in the Culture of the Plains Indians” by Sally Painter “The elders of the family played a vital role. The women helped in child rearing and domestic chores. The elder men may have served on the chiefs’ council. They served their extended family as teachers, mentors, spiritual advisors, and confidants. The Plains Indian elders were highly respected by their family. The family took loving care of their elder members, and honored the infirm to ensure an honorable, dignified death.” (Family Life in the Culture of the Plains Indians | LoveToKnow)

In my opinion, this is what family is all about.

I find it extremely sad that family care, for some, is nonexistent. I often wonder, why are we here if we are not taking care of each other and being kind to each other with love and compassion? I believe this is one of the core reasons we are on Earth.

There are many other ways to take it slow and take care of ourselves during the holidays, and that should continue into the year. We all know these things, but it can’t hurt to say them anyway.

We can all use a reminder of what our bodies need, myself included: exercise (at least take a walk), comfort from a pet, plenty of sleep, eat as well as you can. I know, nearly impossible during the holidays. It can be really difficult to not have dessert at every gathering. I mean, we have to try our friends’ desserts! Take small portions so you can enjoy without overdoing it.

These are all things we know. My hope is that this blog will give you a little encouragement and strength. Remember to have fun and take time out to be silly.

Caregiving is a lot for one person, and no one can ever know what it’s like until they have walked the path of a caregiver.