Looking back on past experiences, it’s common to dwell on what you could have done differently or how much easier it would have been “If only I’d known XYZ”. But let’s be honest, we often don’t know what we need when we’re stuck in the thick of things.
That’s the beauty of hindsight – it gives us a chance to look back on our past and learn from it. Every experience, even the tough ones, is an opportunity to accept the lessons learned and carry them forward.
Families who’ve been on the unexpected journey for some time can have a lot of understanding and experience when it comes to hindsight. So, I asked several families I know if they would mind passing on their “If only I’d known” lessons they’ve learned. Here’s what they had to share:
The Power of Community
Many families shared how a supportive community can make a world of difference. Connecting with other parents facing similar experiences can provide emotional support, resources, and advice. Check out more ways to socially connect with other caregivers here.
Mom of three children on IEPs: “I wish I knew years ago how invaluable community is. Connecting with other families facing similar challenges can provide support and valuable insights. I would not make it without my mom friends!”
Mom of an adult son with complex needs: “I wish I knew I needed to find support, a “tribe”, of other families who were on the same journey and got it.”
Self-care is a Must
It’s easy to get caught up in caring for your loved one, but it’s essential to remember to take care of yourself too. Remember, you can’t pour from an empty cup. If you haven’t read my recent post on preventing caregiver burnout, you can find it here.
Mom of a teenage son with a rare chromosome anomaly: I’ve learned it’s ok to take time for myself and not feel guilty. Even if it’s just 10-15 minutes a day. If I don’t recharge and refuel, I will be no good to my son, myself, or my family.”
Mom of two sons with autism: “To care for my boys, I need to make sure to care for myself too…physically, emotionally, and mentally.”
Mom of a teenage daughter: “Looking back I was SO focused on my daughter that I was exhausted and didn’t have anything left for myself or other family members.”
Seek Counseling
Counseling provides a safe space for you to express your feelings, fears, and uncertainties without judgment. Remember, seeking help is a sign of strength, and by taking care of yourself, you are better equipped to care for your child.
Mom of two sons with autism: “Six years after our first son was diagnosed with autism, I found a counselor who specialized in parents who have children with disabilities. Before that, I spent years having doubts and thinking that I had done something wrong or had not done enough for my son. I would cry at IEP meetings and parent-teacher conferences. Now, I can complete an IEP meeting with only a moment or two of watery eyes. (I find that a big accomplishment!!). My counselor has also been great for connecting me to local resources.”
Advocacy is Key
Understanding your rights, advocating for your child’s needs, and navigating the system can be overwhelming. By educating yourself on your rights, staying informed about available services, and seeking support from others who have been through similar experiences, you can empower yourself to make informed decisions and meet your child’s needs.
Mom of 3 children on IEPs: “I wish I had known how important advocating was for your loved one’s needs within the educational, medical, and social systems. I have had to grow more confident in this over the years. I have three children on IEPs — all different levels of needs. Speaking up for what will be best for them is always my role as their main advocate!”
It’s Okay to Ask for Help
Several families shared that they wish they had known it’s okay to ask for help. Whether it’s from family, friends, support groups, or professionals, reaching out for assistance is a strength, not a weakness.
Mom of a teen son diagnosed with autism at 18 months: “After a couple of hospital scares, it made me realize I needed help. What would happen if I was no longer here to help my son? I needed to give myself some time outside the world of autism and to share more with my husband. Finding a reliable respite caregiver, helped tremendously. It helped my relationship with my husband, and it gave me a chance to look at my life from a different viewpoint. When you are dealing with a disability all day, every day, you lose some perspective of the world outside.”
Celebrating Every Milestone is Important (especially the small ones!)
It’s so easy in our society to always be chasing the big achievements. Remember to celebrate every milestone, especially the small ones! These moments often go unnoticed but are the most significant in our children’s lives. By acknowledging and celebrating these small victories, our mindset will shift towards gratitude. Remember, no matter how insignificant it may seem, every milestone contributes to our child’s growth and progress.
Mom of three children on IEPs: “Acknowledging and celebrating every achievement, no matter how small, is huge!”
Mom of teenage daughter: “I celebrate the little things. One year my daughter came home with a detention for talking too much during class. I lost it and started laughing because they said she would NEVER talk!”
Embrace Flexibility
Flexibility is so key when navigating this unique journey. Being open to adapting plans, schedules, and expectations can help create a smoother experience for everyone. The ability to pivot when faced with challenges takes understanding and patience, but don’t give up! Your child will more than likely give you plenty of opportunities to practice. 😉
If flexibility is a struggle during the holidays, check out some easy tips here.
Mom of three children on IEPs: “Plans may need to change, and that’s okay. Adaptability is essential on this journey. Other families may not understand but we have had to learn to do what works best for our family and thrive in that. And sometimes it changes minute by minute or day by day!”
Address Challenges Early On
By addressing challenges early, we can help our children reach their full potential. The right tools and resources early on can make a huge difference in our child’s growth and improve their overall quality of life.
Mom of a teen son diagnosed with autism at 18 months: ‘A topic that seemed to keep coming up in all the books I would read was this mention of a “window”. There’s a window of time in the early years where the more therapy and parent engagement that happens, the better chance my son could learn skills necessary for his lifetime. So, at the age of two, my son started with thirty hours of ABA therapy, one hour of OT, one hour of speech, two hours of swimming lessons, and lots of outings, playing, and reading.”
Mom to a 15-year-old son with autism: “If I would have known that he would not be able to do simple things, I would have pushed him more in the early years of his life. Expressive communication is the biggest issue he currently has and, now at age 15, that issue has turned into frustration, which has led to anger and, more recently, rage. I would have pushed the schools to give him more hours of speech, placed him in a school that focused on communication, or in a school that served students with neurological disabilities. I can’t imagine what it would be like not to be able to express my thoughts, feelings, wants, and needs.”
Mom to an adult son with complex needs: “Increasing the number of interventions and therapies and the frequency in which they go, does not necessarily equal faster results. I had to realize that results can not be forced. They will come in their timing.”
Learn to Ride the Waves
It’s natural for parents to experience a wave of emotions when their child is first diagnosed. Remember, it’s okay to feel overwhelmed. But as time goes on, with the right resources, supports, and community, you’ll gain the confidence needed to walk this journey.
Stay strong, believe in yourself, and remember, you’re doing your best for your child.
Dad to a 17-year-old son with a rare syndrome: “I didn’t realize how complicated this journey would be. No one can tell you how it’s going to turn out — will he be able to read or write, have a job someday, or live on his own? You just have to help them the best you can, then wait and see. As a man, that is hard. We like to fix things. I couldn’t fix this (not my son, but the situation). My advice is not to come into this thinking you can “fix” anything. Instead, you have to learn how to ride the waves and balance all the ups and downs as they happen.”
Mom of teenage daughter: “It’s a marathon, not a sprint. It’s one year, one month, one day at a time. Also, don’t wish away the here and now — relish at the moment. I kept thinking at every stage she would meet certain expectations. Keep the expectations in check, but don’t stop dreaming.”
“This journey is filled with grief, sadness, jealousy, confusion, anger, guilt, loneliness, and fear. All these emotions are normal. They will ebb and flow through the years. Use what you have learned and pass it on to younger families on the same journey. When possible, be a beacon of hope for them.”
Thanks so much for reading! I hope these nuggets of wisdom help you through some of the twists and turns that come with this sometimes crazy, unpredictable life.
If you have any “If only I’d known” moments to pass along, I’d love to hear them! Be sure to leave a comment.
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