Dear Sweet Mama,
If I could go to you and hug you tightly, and promise you it was all going to be OK, I would. There are many things I’d say if I were face-to-face with you.
But I’ll start with this:
You will get past the diagnosis.
When the diagnosis is new, your vast range of emotions will be hard to sort through. You won’t know if you are happy that someone confirmed you weren’t wrong about the diagnosis, or if you are scared to death about what this will all mean. It’s OK. It’s OK to grieve. It’s OK to cry, scream, question why, feel bitter and isolate yourself for a time. But don’t stay there mama. Please inch your way back out. There will be times where it will feel impossible. Hold on anyway. You and your little one will make it through. You are an All Star team together. You will inspire and feed off of each other’s accomplishments and strength along the way.
Autism can affect your marriage.
You and your spouse are likely going to handle this entirely differently. Don’t give up on each other. One of you will likely want to get an immediate grip on things, spending endless hours researching autism: diets, therapies, doctors, insurance benefits. They will be hyper-vigilant, leaving no stone unturned. Yet, the other might seem unaffected by the diagnosis, in denial, maybe in shock. A barrier could grow between you if you aren’t careful from the inability to grasp and articulate the difference in each other’s emotions. Love each other through this.
Things will never be the same after the diagnosis.
Should working parents stay home from now on? How will you coordinate all the pick ups and drop offs with all the new services? What friends will stick around through the hardest times? How can you maintain some semblance of stability for other children in the home, who will be dealing with this in their own way? The diagnosis will feel all-consuming, overwhelming. Remember, your spouse and kids matter more than the diagnosis. Take time to sit down and be present in the moment with them.
Find your support team.
You will need to find your people. The ones who “get it.” You might feel like you are drowning, but your team will help rescue you. They will give the most sincere and comforting “I understand” compassion you’ve experienced yet. Families with older kids have made it through this phase, and have invaluable information regarding available programs, special needs schools and therapies, and how to best advocate for your child. These things will constantly evolve, based on your child’s age and development. Your team will serve another purpose. They will remind you often of, perhaps, the most important thing: your child is beautiful, and you are an amazing mama. Some Facebook pages include Finding Cooper's Voice, Atypically Joyful, The National Autism Society website is great, and you can also check out my blog, where I share more about autism and parenting, AtypicallyJoyful.wordpres.com . If you live in the Brandon, Florida area, you can join this FB support group: SouthShoreSupport.
Perfectionism and comparison.
You will need to throw away your perfectionism. Completely away. Perfectionism will stop you from fully accepting your child and from forgiving yourself and your spouse a million times over. You can let it go. I promise. Take it one day at a time. Keep growing. You cannot control everything. That is OK. Who wants that sort of responsibility anyway?
It will serve you best to toss comparison out as well. Sibling to sibling. Your child to other people’s children. Your motherhood experience to others. When you see the posts about milestones other people’s kids reach, you may feel a renewed sense of sadness for what you and your child don’t have. Feel it. Then move forward. You have something just as special. You and your child’s list of accomplishments were hard worked for and well earned. Celebrate them!
Don’t lose sight of your child’s amazing strengths and unique abilities. Don’t get so obsessed with therapy and doctor visits that you forget your child is incredible. More than anything else, your child just needs their mama’s unconditional love and praise. These things are simple to give. But not if you are too burned out.
Coordinating your new schedule.
I want to give you permission not to keep every single commitment. It is OK to cancel or reschedule a therapy visit, a doctor appointment or even a planned event with family or a friend. Some days, rest, or keeping you and your child’s peace, will be most important. It’s OK. Don’t feel guilty. Your best is good enough.
Hold on to hope.
Some of those milestones you fear will never come will come! I promise. Don’t give up. Potty training? Effective communication or words? Making a friend? Hope for these things! Some of those small things — dressing himself, tolerating brushing his teeth, staying at the table for most or all of a meal — they are possible. Hold on to hope. True, some of them might not come. But, some of the ones you thought could never come, will. It will be as exciting as you hoped when it happens.
Love yourself (breathe).
Patience has limitations. It will be tested repeatedly during this journey. You will often feel like you are alone and depleted. Breathe. Often. Stop. Close your eyes, and breathe. You will find the energy anyway. You will do everything you know how, and never give up. To be honest, you will feel like it sometimes. Forgive yourself. I am cheering you on from the stands, and giving you a standing ovation.
You will persevere on the journey.
Finally, I want to remind you, that you and each member of your family are Rock Stars. You will climb mountains that you couldn’t even see the peaks of when this journey began. You will meet some of the most amazing people along the way, climbing their own mountains, teaching, loving, inspiring you and boosting you up along the way. You will do the same for other families. And, those mountains? You will look back from the top and finally grasp, this journey isn’t really impossible.
This original The Mighty post can be found here.