Be present.
It's okay to say no.
Just try it.
Self care=survival.
Use the resources.
Sometimes you will feel defeated.
You are the frontline to success.
Most people mean well.
Trust is HARD.
Do not compare your child to others.
"Can't" needs to leave your vocabulary.
You are not alone.
Be present.
Having a child with special needs can be all consuming. The work, the worry, the search for resources-it can all make it's way into every crevice of your brain and sit there to stew. For me, I am constantly worried about what is next. What resources will he need next year in school? Will he be able to go to college independently? Who will make sure he is taken care of when I am gone? These worries about the future literally run a marathon through my head constantly.
A year or so ago, I was sitting on the beach as my boys giggled and laughed in the sand. I found myself thinking about whether or not Andrew would have anyone to sit with at lunch in high school. Y'ALL-the child is seven. High school is light years away. Also, what does sitting in
my beach chair worrying about this future situation even do to help him or me? Answer: it did NOTHING to help either of us. Do you want to know what it did do? It caused me to miss out on enjoying that day with my six and three year old on the beach. I missed their giggles, I missed their castle building-I missed moments of their lives that I will never get back.
I often look back now and realize that I spent SO MUCH of Andrew's early years worrying about the future. So much so, that I missed so much of his present. I was there with him every day but was I always present?
The future is coming whether we like it or not. Our babies will grow up and with each age and stage new challenges will come. We do have to prepare ourselves and our children for the future, but not at the cost of missing out on the present. Enjoy your children's childhood. Enjoy their giggles. Enjoy it all. The rest of it will still be there tomorrow....
It's okay to say no.
On this journey, you will be surrounded by experts. Therapists, doctors, interventionists-they are all experts in their fields, and for the most part, they all have your child's best interest at heart. YOU, though, are the only expert on your child. You know your child inside and out, upside down, and right side up. You are connected to them in a way that no one else is. If your gut tells you "no", then remember IT IS OKAY TO SAY NO. I said no to a therapy that many experts kept telling me I needed to pursue for my son. I made the calls, I listened to the spiels- but all the while, that little voice inside me said NO. It told me it was not the right choice for my son. It was totally ok if it was the right choice for someone else, but for him, it was not. Be confident in your gut feelings and don't ever allow yourself to be persuaded into a decision for your child that goes against what YOU think is best.
Just try it.
New experiences for your child may be hard. They may struggle with transitions, sensory needs, or simply the anxiety of the unknown. Do not allow the fear of this possibility to keep your child from gaining new experiences. JUST TRY IT. It may be a total disaster, or your child's reaction may totally surprise you.
Our family LOVES going to Broadway shows. We do not miss one that comes to Charlotte. This past fall, my parents and sister invited Andrew to go with them to see Frozen live on stage. I was immediately unsure if this was a good idea. Will he freak out when they turn the lights off? Will he be able to sit still and pay attention? Will he cause everyone else to leave early? GUESS WHAT- that amazing boy came home clutching his new Elsa doll with all the thrill and excitement in his eyes that only a live show can bring. If I had let my fear
of the unknown keep him from this new experience, I would have cheated him out of an incredible memory. Of course, there are times that we did try an activity and it wasn't all roses and sunshine. THAT'S OK, TOO! There will be fear with new experiences-LET IT GO(see what I did there?)-and just try it!
Self care=survival
It is a MAJOR cliché, but remember that old airplane tutorial about putting your mask on before helping another with their mask? Well, cliché or not-it's the dang truth. Being the parent or caregiver of any child is exhausting, but parenting a child with exceptional needs is downright draining. It is so easy to lose yourself in such a demanding role. It is okay to admit that you are worn down and need a break. If help is offered, TAKE IT. If you have the opportunity to do something for you, TAKE IT! It is very important for your mental health to keep an identity outside of your role as a parent to a special need's child. Go on a date with your significant other, take that girl's trip, join a book club, or simply set a time every morning to meditate or exercise. Prioritize your physical and mental needs. You are no good to anyone if you are not your best self. YOU deserve your best self and your child does too!
Use the resources.
There is help out there. There are amazing therapies, financial assistance resources, insurance options, respite care resources, and so MUCH MORE! You have to research these resources and USE THEM! You really have to lean-in to the process. Once you find the right doctors and therapists for your child, fully commit to them being partners with you in your journey; however, even with them as your partner, they are not going to be the "change makers." YOU ARE. Sixty minutes of therapy each week is NOT going to change your child's life. You attending those therapies, observing the methods, and integrating them into your child's routine on a daily basis will make a HUGE difference in your child's life. You advocating for your child's needs and the resources they deserve will make a HUGE difference. I will not lie to you-this is work! It is hard work. It will be the hardest job you have ever had in your life. It will also be the most rewarding and meaningful work you have ever, ever done. You got this! Use the resources and put in the work!
Sometimes you will feel defeated.
Full disclosure- I broke down and cried HARD today. I am truly at a point where I feel comfortable and confident in our journey and in Andrew's diagnosis. I have found peace in it, and I have shifted my focus to being a support to other parents struggling with this journey. BUT, I still have really difficult days where I feel totally defeated. The difficult times of parenting a child with a disability will ebb and flow in your life. Sometimes you will feel like you have it all figured out and you are just chugging along on the happy train. AND THEN-BAM! The happy train turns into a struggle bus. That is life. Life is not meant to always be easy. Life with our extraordinary children is definitely not always going to be easy. With challenges, comes change. Hard times will make you appreciate the progress and the good times even more. Keep your head up and remember this is just one small part of the journey. Tomorrow is another day and believe that tomorrow will be a better day. I have always held onto this quote when I am feeling defeated-"So far, you’ve survived 100% of your worst days. So this too shall pass."
You are the frontline to success.
As a parent of a child with differing needs, we strive for our children to be included, accepted, and for their true potential to be recognized by teachers, friends, family members, and society in general. We want people to see that they can achieve and perform the same as their peers. We want their hopes, dreams, and goals to be fulfilled. We do not want their diagnosis to hold them back and to define their future. The very first person that has to truly believe in this infinite potential is YOU. You have to put aside the worry, the doubt, and the misconceptions that society has ingrained in us all, and truly believe. Your child deserves that from all of us and that starts with you.
Most people mean well.
Let's face it-There are stupid people in this world. Some people are downright ignorant. BUT, I truly believe that most people in our lives mean well. Most people come from a place of love. I have had friends, family members, teachers, doctors say things to me about Andrew's diagnosis that were downright offensive and really hurtful. "I'm sorry that this happened to you." "He looks just like everyone else. I would have never known he was autistic." "Are you sure? He seems normal to me." "Ugh, if my child does not stop talking-I'm going to go crazy."(that one hits especially hard when you are praying for just one miracle word from your own child) "Do you think he will grow out of it?" "You should feel great that he doing so well that the school district denied him any services."
I have heard them all and then some. I know you have too. I have decided to not take these comments offensively but to use them as tool to teach our loved ones about inclusion and acceptance. The truth is I don't want people to be sorry that Andrew has autism. I am not one bit sorry. I am grateful and blessed that he is exactly who he is. I would not change one thing about his perfect self. He has been my greatest adventure.
The people in our lives who love us feel the same way about our children. They love them unconditionally and just want them to be happy. They just do not know how it feels to be in our shoes. They truly can't relate, and we cannot expect that of them. Do your very best to take those comments, even the one's that sting the most, and try to see that most come from a place of love and trying to be a support to you. This journey is a lot easier if we can help people support us in the right way instead of chastise them for trying in the wrong way.
Trust is HARD.
Trusting others with the care of your child is hard. It is especially hard when your child may not have the words to express when they are uncomfortable or unhappy in a situation. I find myself apologizing often to Andrew's teachers for being a "helicopter parent." I require a lot more communication from them than many parents do. I send a lot of emails, texts, and questions their way. I have learned over the years not to feel bad about that. My situation is unique from many other parents. I keep that communication open and honest from day one. It is really hard for me to drop him off at school or summer camp and not know what goes on during his day or who he will encounter. It is so hard for me to trust that people around him will have the best of intentions and always treat with him with love and kindness. We will never know everything about our children's lives when we are not there-we can't always be with them and that is not an easy pill to swallow. We have to let them leave the nest and trust that the people we have chosen to surround them will help them fly. All that being said, stay present at your child's school, in your child's relationships, and set the expectation that you will always be there to fight for their best interest.
Do not compare your child to others.
If your child has autism and my child has autism, that does not make them the same. That makes one tiny aspect of them similar to one another. My child may not struggle with sensory issues and yours majorly does. Your child may be a social butterfly and mine struggles to open up to finding new friends. We cannot place our children in one category based on a diagnosis. We cannot expect every therapy to work the same way for every child. We should not expect every child to progress at the same rate and along the same path. There is a well known saying that comparison is the thief of joy. For our little ones, I believe that comparison is the THIEF of progress. Celebrate your child's accomplishments and milestones, even if they seem slow or small in comparison to others. Do not allow the endless evaluations or assessments to steal your hope. Numbers do not define children. Keep your focus on genuine effort and personal progress.
Can't needs to leave your vocabulary.
In the beginning of our journey, when my head and my heart were truly at odds with my son's diagnosis, I led a lot of my conversations with, "he can't" or "he will never be able to." One day my husband looked me square in the face and said, "There is nothing he can't do. There is nothing that I will ever accept he won't do. If we set our expectations low for him, that is all he will achieve. If we believe and afford him the opportunity of high expectations, he will always know we believe he can." From that day forward, I let the word "can't" leave my vocabulary, in regards to my son. If he wanted to play baseball, we signed him up for baseball. If he wanted to learn to swim, we braved weekly swimming lessons. We enrolled him in a regular education classroom with little to no accommodations. We never let his diagnosis lead our decision making of whether or not he could do something he wanted to do. We did let his diagnosis lead our communication and education of others on what works best for him, but we never let it hold him back-and never will. Truly, I have my husband, Zak, to thank for that. He educated me from the very beginning about inclusion and acceptance without even really knowing it.
You are not alone.
Even with all of the support in the world from family and friends, this journey can feel really lonely. It will make it a whole lot easier if you can find a tribe. A tribe of people to lean on when you feel that defeat, a tribe of people to call when the struggle bus shows up, and a tribe of people just to listen when you need someone to hear you out. I want to be part of your tribe. Our journey is surely not the same-as no two people's are; however, we can relate on a level that not many can. We have walked in eachother's shoes in more ways than one.
Shoot me a message on socials(Anna Grosschmidt) or send me an email annagrosschmidt@gmail.com. Let's support one another and make the hard days a little easier and have one another to celebrate with on the happy days.
All my love and support, Anna
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