Are you walking into a new world of special needs parenting for the first time? Are you a few years in and finding things hard to manage right now? Or are you the parent who has walked this path and is now looking ahead at what services are there for your child’s future? Here are some gems of advice that I have received from others who have walked this path alongside me and before me—plus some of my own.
1. Advocacy can come in many forms.
If you are the loud and proud mama or papa bear walking into an IEP meeting or evaluation asking all the questions and expecting answers, that is the perfect way to do it. If you are the parent who is searching the internet looking for all the studies and best practices to be prepared to walk into each meeting with statistics and sites behind you, that is wonderful. If you are a quiet parent finding their voice behind the forms, appointments, and recommendations who reach out to others for support, it is just right to bring those voices with you.
What I have learned along the way from others is you can have a combination of these advocacy approaches at different times when different emotions are flowing. No matter how you lift yourself up and fight the good fight, that is what is right for today.
2. Talking about all the feelings that come with parenting is ok.
As parents, we often feel that speaking about the dark and hard is shameful. Others aren’t feeling the way you are because you haven’t had someone open up to you about it yet. We sit in feelings of guilt, sorrow, sadness, feelings of failure, and overwhelming tasks. These feelings do not overshadow the joy, love, happiness, and bliss that comes with parenting, so it is ok to talk about them.
Not only is parenting a challenge on some days, but special needs parenting comes with so many additional challenges. I never wanted to feel lost in the what-ifs, hows, or whys but it is natural to feel that way at certain points. The commercial idea of parenting found in parenting magazines can feel defeating and unrealistic. Please share your story with others because there for sure is a parent sitting behind a closed door waiting to hear that they are not alone.
3. Take in the wins, celebrate each accomplishment, and honor the hard work.
As special needs parents, we sit with therapists, teachers, and even family members as they highlight the perceived deficiencies in our children. We watch each minute of practice and hard work to hold a fork, brush teeth, recognize words, speak a sentence, communicate needs, and so much more. Our family circles in the celebration with each accomplishment to fight off the mountain of forms, saying that our children might be able to accomplish these things. We shout with joy because these are the true heartfelt moments of parenting magnified by time waited and hours practiced.
Not only do we honor the hard work, but we absorb it as our own accomplishment alongside our children, because what parent doesn’t feel pride when celebrating their child’s accomplishments. Autism has given us the ability to slow things down, to watch the accomplishments that others take for granted, and circle our children in celebration.
4. Have a “tap out” word or phrase.
When you are feeling at your brink, when the noise is too much, when the systems are too much, and when you can imagine your feelings pouring out of your body onto the floor in front of you, have a tap-out word. Ask for help sometimes; it’s ok to say today has been too much, I need to go to bed early, I need to take a walk, or I need to eat a mountain of cake alone in the dark in my pajamas (this may be directly from my own experience).
Special needs parents are human, we all have our moments where we need to just tap out. If you have a person who can do that for you in your life, don’t let the feelings of guilt come along with it. By taking a break, you are honoring not only yourself but your family, too. The fresh perspective you will come back to parenting with after a break might be just what you need to shift the energy around you.
5. Watch, learn, and grow.
From the one and only Busta Rhymes, “If you don’t know, now you know.” Every day we are learning from our experiences. What is behind us shapes where we are headed. Learn as much as you can from your children. Take them in as much as possible. Even if they are in a dumping stage and everything from a bowl or plate lands on the floor, rub it into the carpet with them sometimes. I knew nothing about autism before our children’s diagnoses. I didn’t know the correct terminology, what was offensive to others, or what therapy would work best for them. I am still learning all the ins and outs of this world, and I am grateful for all the information out there. I am growing as a person and I hope to take in as many perspectives as possible.