If I could go back in time and talk to myself at the beginning of this journey with special needs, there are 5 things I’d want to share. This journey has been full of its’ ups and downs. There are many things that I have learned along the way, and there are also many things yet to be learned. So, this is by no means an exhaustive list of everything there is to know. No fancy acrostics here either, just a few things that I learned the hard way and that I often share with those who have just begun their own journey in Special Needs. 

Take care of yourself

Selfcare is a must. It’s not selfish. If you’re not doing well, you won’t be able to help anyone else. It’s like when you board an airplane and the flight attendants say, “Please put on your own oxygen mask first before you put on your child’s”. It seems counter intuitive right? But the truth is that if you don’t do this, you may pass out before you can ever help your child put on their lifesaving mask. I worked as a lifeguard for many years through high school and college and I remember that one of the first things they taught us was that drowning lifeguards cannot save drowning people, so don’t allow yourself to be put in a position of being taken down. You get the picture. Take care of yourself. Take a break to do some of the things that you enjoy even if you only have a few minutes to an hour to do them: take a bath, read a book, watch a movie, listen to a podcast, create something, get out in nature, exercise, get a haircut or get your nails done, and find a way to laugh. Proverbs 17:22 tells us, “A cheerful heart is good medicine, but a crushed spirit dries up the bones.” Also make sure you see your doctor and dentist for regular checkups. Lastly don’t be afraid to talk to a church counselor or licensed therapist if you find that you are struggling or just need a safe sounding board. Your mental and emotional health is just as important as your physical health. When you take care of yourself you can then operate from a better place of strength, and you will be far more effective at doing the things that you need to do for your child and anyone else in your life.

Invest in your marriage 

As moms and dads, we find it instinctual to invest in our children especially when hard times come along. We not only focus on the needs of our child with special needs, but we make sure to take the time that is needed for our other children as well. Being sure that each one feels loved and cared for. It is so important that we give our spouses the same kind of love and attention. Our marriage is the tie that binds. Just as we operate from a stronger place when we take care of ourselves first, we operate from a stronger place when our marriage is thriving as well. This is in no way a comment on those of us who are single parents. Life is complicated. If you are married be encouraged to do everything you can to stay connected and grow together in your marriage. Communicate daily. Face to face is great, but a daily phone call or a video chat at lunchtime or a text chain throughout the day can do wonders as well. There are so many options with today’s technology. Have a weekly date. Dates with your spouse are so good for that one on one focused time together, so do whatever it takes: recruit friends and family for childcare, obtain respite care or find respite nights at a local church, or just put the kids to bed and have a late dinner or dessert together and laugh at your favorite movie. Plan a getaway once in a while. I know just how impossible this last idea can be, but believe me it is beyond worth it even if it takes days to plan and prepare. There is nothing like having some extended time away even just for an entire day. When you are under the amount of constant stress that we can be under it is so important to actually physically get away. It takes some time to decompress. My husband and I always laugh about how long it takes to decompress. When we first get into the car and drive away, we are both silent just feeling the quiet and calm of the moment. It’s like we’re in shock. And then we slowly come out of it and we begin to talk, engage each other, and even laugh. Research shows that getting away and having down time to relax and play is also good for mood and physical healing. When we have this kind of down time is when all sorts of happy hormones like endorphins, dopamine, oxytocin, and serotonin are released and our extremely tired and worn out bodies can heal.  

Connect with others 

Sometimes it’s tempting to simply give up and isolate ourselves rather than connect with others. “It’s just too hard”, we think to ourselves. We have a busy schedule with all of our child’s appointments, and so we don’t feel we have any extra time for this. Besides we’re tired. Really tired. We may be struggling with sadness and grief over our child’s diagnosis and prognosis, and we think no one will want to be around us. Or we may see other people that we think are not dealing with what we’re dealing with and we conclude that they probably couldn’t relate to our life anyway. But let me encourage you by saying that connecting with others is worth it. Don’t isolate yourself. God has created us to be in relationship with others, and it can be such a blessing. Ecclesiastes 4:9,10 advises, “Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up. But pity anyone who falls and has no one to help them up.” So, take the time to connect with others no matter how busy, tired, sad, or misunderstood you may feel. Meet your coworkers for lunch and have a good laugh, host a pizza night with the extended family and play games, get your nails done with a girlfriend and vent, go out for guys or girls night and have fun, message an old friend and touch base. And be open to a conversation with people that you think could never relate. Sometimes these are the people in your life that will surprise you the most. We’ve had several people in our life over the years, who didn’t know a thing about Autism before they met our daughter and our family, and then later became our most vocal advocates and supportive friends. Connection with others is powerful and it can mean the difference between just making it through this life and thriving.   

Let it go

Often when something feels out of our control in our lives, we feel a need to control whatever else we can. We work hard to keep things in order and to make things as perfect as they can be. I spent many years trying to make everything as perfect as I could for my daughter and for my family. The latest therapies, the most sought-after biomedical interventions, the most reputable educational advocates, the best tutors, you name it. Meanwhile I held a job, drove the carpool, volunteered at my son’s school, helped with homework, was on the leadership team for multiple church and community organizations, kept the house clean and pantry stocked, cooked the meals and packed the lunches, and did whatever else I felt I needed to do to make things right and perfect. Sound familiar? The problem is that a person can only run at this pace for so long and, and at some point, I could do it no longer. Perfectionism is a hard thing to let go of. But it’s important to learn that not everything is in life is going to be perfect. In fact, perfect is over rated and it is an impossible standard to meet.  Life is unpredictable, but sometimes in the middle of the unpredictable, the unplanned, and the “unperfect” is where we find our biggest blessings. So, to all of us perfectionists, especially to us moms that work so hard to make everything just right for our children and for our families, I say let it go. Let the house be a little messy because it shows that a family is busy making memories there. Let everyone eat take out for dinner and spend the time laughing at the table instead of cooking. Let someone else volunteer for that position and give them their turn at bat. Let yourself do a fraction of the things you usually do for the holidays and be a more rested, happy, and present person. And let yourself see the beauty in all the unexpected and the imperfect of life. This life can be challenging enough as it is. You don’t have to be perfect, you can let that go.

Just Breathe

One of my favorite songs is called “Just Breathe” by Jonny Diaz. The chorus goes:

Breathe, just breathe  
Come and rest at my feet,
And be, just be
Chaos calls
But all you really need 
Is to just breathe

This song is so impactful. I think the first time I heard it I was in my car and I literally stopped and took a deep breath. Here’s the thing, we can take on this life cuss’n and fuss’n, and end up struggling to find any kind of peace in the midst. Or we can surrender and stop our striving and completely trust God with whatever we may have to face. I’ve done both. Trusting God has been a much easier hope-filled road to take. This doesn’t mean that you stop taking opportunities and fulfilling your responsibilities as you wait for God to make a move. Of course not. Actually, God has already made a move in placing those opportunities and responsibilities before you. And He has given you talents and gifts and a mind to be able to make decisions that need to be made for your child. But it IS a matter of trust. God asks us to trust Him. When you do, you will see how He comes in and meets the needs (Philippians 4:19). You will see how He strengthens you for the task ahead (Isaiah 41:10). You will see how He grows, uses, and blesses your child (Ephesians 2:10). And you will see how He is with you as you go through the hard (Psalms 34:18). He has the plans, He makes the way, and He directs our steps (Jeremiah 29:11, Proverbs 16:9b). God’s got this. And He’s asking us to, “Be still (Cease striving) and know that I am God” (Psalms 46:10). So just breathe. 

Like I said this list is not made up of everything there is to know. But it’s a starting place. For many years I struggled with much of this, and it has been one of my greatest joys to pass along whatever I’ve learned. To make someone else’s journey that much easier. But mostly to point to the reason for my hope in this life. I couldn’t do any of this without my Lord and Savior. He has taught me everything I know.