I am married, have two children, and I’m still growing. Each day provides opportunities for education about my inner self, about relationships, and about life. Many of these lessons were learned when my youngest son, who is autistic, was very little. I love and respect my son, and wanted to do whatever I could to support him and help him to thrive. As the result of our journey, and meeting other parents along the way, I slowly began to develop some guiding principles that still I try to remember when I find myself in difficult situations. I TRY to remember, anyway. I may have learned these things, but that doesn’t mean I have mastered them. I am still a work in progress. Here is my list so far of things that parenting a child with special needs has taught me about life in general:
- Beauty can be found in unexpected places. This first one may sound trite, but is an essential truth I cling to. Life can present us with struggles, yet it is in the midst of darkness that we truly appreciate the light. During our journey I have learned about strength, love, perseverance, and forgiveness. I have also met some amazing people along the way.
- Embrace what makes life unique. The world is full of opportunities for adventure. It is also populated by a gloriously diverse people who have a lot to teach us, and deserve our respect and acceptance. Different is AWESOME, and can provide a refreshing new perspective on things. In my house we call it “Not Boring.”
- Parenting can be hard sometimes. Special-needs or not, it can be exhausting to have another human being be dependent on you for all their needs. That doesn’t mean that our children are a burden, because we LOVE them. However, full schedules, perpetual problem-solving, and things like constant medical concerns can make us weary.
- Ask for what you need. The people in our life don’t always know how best to help us. They may also assume we don’t need anything if we don’t ask, so speak up. Sometimes we require assistance to get through. It’s not selfish or weak to ask for help.
- There will be periods in our life where it feels like we take more than we give. This can be especially hard for caregivers to accept. Remember that our worth is not defined solely by what we do for others. There will be other times in your life when you will be in a position to help someone else who is in need. The scales are never balanced.
- You are stronger than you think. “I don’t know how you do it,” I have heard people say. We just do what we have to. I think we often underestimate our own abilities and don’t realize how strong we are until given an opportunity to flex our muscles. I am immensely impressed by the strength and resilience displayed by my son, and some of the obstacles that he has overcome. The power of the human spirit never ceases to amaze me, and adversity can teach us and help us to grow. But it is important to remember this next one…
- Self-care is ESSENTIAL. Exercise. Try and get enough sleep. Eat healthy. Find what helps you relieve stress and then somehow find time to do it. Clear the schedule. Unplug. And for goodness sake pamper yourself once in a while. You deserve it! You NEED it!
- Be honest about your struggles. Allow yourself to feel even the negative emotions and talk about them. Those feelings are there to guide and teach us, and it can be damaging if you simply push them back down inside. Find people that are safe sounding boards and vent away.
- Keep moving forward. Let it out, but then let it GO. Try not to get stuck in a negative place because it can warp your view of your situation.
- Count your blessings. EVERYDAY. Regret can be powerful, and when you constantly focus on what you DON’T have you can lose sight of what you DO have. Instead try to be positive. Gratitude will help carry you through.
- There is danger in comparison. Don’t look at your life through the lens of someone else’s life. Their life isn’t better or worse, it’s just different. Besides, you don’t know what struggles they face behind closed doors. That soccer mom with designer clothes and seemingly perfect children may have had a really horrible, difficult day; she just hides it really well.
- Don’t begrudge someone else their difficulties because yours may be different or seem worse. This is not a competition to see who endures the most pain. EVERYONE struggles in life. Be sensitive to one another.
- Appearances are not always what they seem. Give people the benefit of the doubt. Try not to make assumptions without knowing the whole story. That meltdown from a screaming child in the grocery store may be the result of sensory overload and not simply a “bratty kid and bad parenting.” If you can’t say something that would be considered helpful then it might be best to keep your opinions to yourself. Don’t judge or jump to conclusions. If someone else says something that you find hurtful don’t be quick to take offense, but instead try to discern their heart and intentions.
- Remember that everyone responds differently to stress. Unexpected experiences can make some people more compassionate, but it can make others appear hard. As you go through life you may find that you switch back and forth between these responses.
- Don’t be afraid to say, “No.” Establish boundaries and save your energy for events and activities that will have a positive effect on you or your family. If something would be too difficult then decline the invitation. Don’t set your yourself up to fail by getting into a situation that you know would be problematic or overly stressful. The well-being of your family is your first priority, and those that really care about you will understand that.
- Cut out the negative people, add in the positive. If a person is draining your emotional energy or doesn’t “get” you or your child it is okay to invest less time in them. Find a community of people instead that will encourage and care for your family. It is also helpful to get input from multiple informed sources and experts, so build a Team of individuals that you trust and listen to their advice. That being said,
- You are your child’s best advocate. Trust your instincts. Don’t be afraid to fight for accommodation in the schools or ask a doctor for a second opinion. I know many a parent who has avoided problems and proved others wrong problems by being persistent and questioning the “experts”.
- Love and accept people for who they are, rather than who you expect them to be. That includes acceptance of any sort of medical diagnosis your child may receive, but don’t allow that diagnosis to limit anyone’s hopes for them. If you are a parent, remember that your child’s journey is their own unique adventure.
- Celebrate every new milestone and accomplishment. Be sure to tell your child how proud you are of them. Take time to rejoice in their growth and achievements, no matter how small they may seem to outsiders. Celebrate your own victories too!
- Be kind. Enough said.
(Edited: After this article was first posted I added an introduction. I also modified #13 a bit and included this sentence, “If someone else says something that you find hurtful don’t be quick to take offense, but instead try to discern their heart and intentions.” I wish I had thought to include that one from the start. It’s a big one.
I also edited #18 after someone pointed out that part of it could unintentionally come across as hurtful. I welcomed his insights, and was glad that he did some of what I talked about in #13 by giving me the benefit of the doubt.)
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