As I looked at the distressed mom sitting across from me, clearly heartbroken over the news she was getting, I listened to the comforting words of the teacher running the meeting. She looked at the mom with kindness in her eyes and explained it like this. “Parenting a child with special needs is like planning a trip to Disneyland. You spend months planning every detail and envisioning all the fun you will have. When the day of your vacation comes you step off the plane and find that you are actually in Italy. Italy is nice, but it isn’t what you planned! After some time to adjust, though, you’re going to see just how beautiful Italy is.” I’m so glad I paid attention to her words of wisdom because I have really needed them over the past two years.
When I was pregnant with each of my kids I imagined the amazing life we would have. It would be filled with fun, and games, and reading, and crafts. We’ve all been there. The moment that second pink line shows up, or the adoption agency calls with a match, we start to make plans. We envision what our lives will be like. We imagine cherubic little faces and blissful moments of cuddling our babies. As they grow we will have parties, and playdates, and outings. Yeah, there will be rough patches, because nobody is perfect, but for the most part we plan for smooth sailing. Before long these dreams and visions of our future become our expectations. We plan our trip to Disneyland and know exactly what our vacation will be like. The thing is, reality doesn’t always match our expectations.
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Expectations vs. Reality
Parenting isn’t as simple as planning a vacation, because we aren’t in control of our children the way we are our travel plans. Our children are not creations of our dreams and wishes. They are unique human beings and come to us just how God designed them. That small fact is both amazing and completely infuriating (depending on the moment). It will make you love your kids, and make you tread precariously close to losing your ever-loving mind. It will also remind you of the truth that ALL parents (even those whose kids have no special needs) will learn. Even in the best of circumstances, things will not go as planned.
For some of us, though, it becomes far more than things just not going as planned. We start to question if we are even meant to be parents because the struggle is just so strong!
Have you been there?
Are you there now?
Are you starting to feel like you just can’t figure out how to be a good mom because nothing you do seems to help? I remember that place (and depending on the day I’m right back there some days). The tantrums would never end. The dinner table battles were epic. Everything I did seemed to make things worse. I was pretty sure I was failing at this whole ‘mom’ thing. Then, thanks to God putting a few very helpful people and articles in my path, I realized that I HAD to figure this out, and trying to do it all on my own wasn’t going to help.
Every special needs parent reaches the point where they have to accept reality. We realize that we can’t do it on our own and we NEED help. Maybe it happened after getting a prenatal diagnosis. Maybe it happened after years of battles and feelings of failure. Whenever it was, the moment you decided to ask for help was the first step. If you are just now stating to realize that your child has special needs, your next step needs to be meeting with your child’s doctor.
Most often, primary care doctors are the gatekeepers for referrals, evaluations, and therapists. You will probably have to go through him or her to get to the next stage, which are the evaluations to figure out exactly what help your child needs. For some of us, it can be quite hard to admit that our children need more help than we can provide on our own. So, taking this step can feel like leaping over the side of a giant cliff. I promise, there is no cliff. As a wise man at a conference once said to me, “It’s not a leap. It’s just a step.” So, take a deep breath, and take that small step to getting your child the help he needs. You CAN do it.
WARNING! While this is a simple step, it isn’t always easy to accomplish. Sometimes you may have to push. HARD. Trust your gut! If you feel deep inside that something is wrong, keep pushing. Most doctors are great, but some forget that we know our children better than anyone. Do whatever you have to in order to get the care your child needs. Get those evaluations!
Special Needs Parenting Resources
The #1 resource that I have found is therapy. Some kids will benefit from speech therapy, some physical therapy, other occupational therapy or feeding therapy, some from behavioral therapy. Many kids will get the most benefit out of being in a few different therapies at once. My boys are both in speech and occupational therapy. Each has helped them in unique ways and at times what they learned in one helped with something they were working on in the other.
As my mom always said, “patience is a virtue”. You may need patience for this process. From the time the doctor issued the referral to when we started therapy was almost SIX MONTHS! We were desperate for help, so that felt like a lifetime! My best tip is to ask for help during your evaluation. Ask the therapist for exercises you can work on at home while you wait for therapy. You can also ask if there is a resource center or social worker at the clinic. They will have a myriad of resources available for your family.
I am so thankful to be living in modern times. While you are going through that painstaking wait to get help, you have the entire internet at your disposal! There are so many wonderful resources online now. Pinterest is a treasure trove of posts on different ways to help children with special needs. Some of my favorite pinners are The OT Toolbox and Your Kid’s Table.
In the past you had to trek down to the library and get someone’s help to find medical articles on your child’s condition. Good gracious am I glad that I can just do a Google search and find any number of scholarly sources on my children’s conditions and treatments. I can do it in my pajamas without dirty looks from the librarians, lol. 😉 Plus, Facebook is a fantastic source of support groups for just about every condition out there! Joining some of these support groups will help to keep you from the isolation that is so common when your children have special needs.
You CAN Do This
Right now you’re wondering how on earth you got to Italy and what happened to Disneyland. Give it time and you’ll see the beauty in your new adventure! It’s scary when things don’t go as planned, but there is help out there for you and your children. Take a deep breath, pray for guidance, and jump on in to this new life. The road may be bumpy, but it’s also amazing. Your child is just as wonderful as she was before you realized her needs and she is exactly who God intended her to be!