I felt blindsided when Gavin was born.
Not the "I expected a girl and got a boy" kind of blindsided. Or the "I planned for a natural birth and had a C-Section" kind, either. I felt blindsided because I realized rather quickly that I was out of my league. With my own child. He had so many issues and I had to rely on nurses in the NICU, doctors attempting to diagnose him and well meaning social workers trying to make things right in my world.
I needed all of them.
I hated all of them.
In the beginning, I expected so much from these professionals. I hung onto every word - and then resented their every breath.
I know what you mean about expecting people... expecting anyone!... to say the right things. But I have bad news for you. They never will. Just like I said in my "about those friends" letter, no one will ever know exactly what you need. You can tell your close friends and family, but you can't really do that with professionals. You can tell your Mom or your sister or your friend, "Listen, it would really help me, emotionally, if you didn't say 'Wow - your life really sucks.' every time I tell you something about the baby's issues. But you can't really say to a professional, "Listen, Doc. Can you hold my hand while you break more bad news to me about my child?"
But. There are some things you CAN do.
When Gavin was an infant and I had to bring him to the pediatrician for developmental visits, the nurse would always run down her "typical" checklist. "Is he holding a rattle?" no. "Is he making eye contact?" no. "Is he sleeping?" no. I would leave there in tears every time thinking, WHAT THE HELL?? Why would they ask me these things knowing that my child can only lay there and is CLEARLY not following the "developmental checklist." I felt so defeated - and so hopeless about Gavin's bleak future. But they didn't know - they were only doing what they were used to. I know they didn't intend to crush my spirit or hurt my feelings, so it was hard to be upset with them. So I took control. I brought in a typed up sheet for each visit listing "All The Things Gavin CAN Do" and asked them not to go through the checklist with me anymore. They were so relieved - they had always felt awful asking me those questions.
For the rest of your life with your child, you will encounter lots of professionals with lots of advice and opinions. I have a great, great respect for people who devote their life to helping our special kids. Whether they are doctors, therapists of any kind, psychologists, teachers, personal aides or nurses. I come from a place of trust - so I always assume that professionals come from a place of compassion and are well meaning.
That being said... you will need to get used to hearing things you don't like. Getting advice that doesn't fit. Hearing statements that rub you the wrong way. Getting a suggestion that seems ridiculous. Or feeling offended or judged. "How could that happen??" you may ask. "Why would she say that?" you might wonder. "Who does he think he is?" you might shout. Here is the secret: they are human.
You'll encounter professionals that give you advice based on what they've learned from books. Or, very often people will bring what worked well with one family and assume it should work well with yours. It's hard, but you have to imagine a filter in your brain and heart. Take everything in with some nodding and smiling - keep what you can use - and disregard the rest. I think most of the time people's intentions are good and they are trying to help, even if they're not helping at all. Just appreciate their efforts internally and let go what pisses you off. It will only hurt you if you hold anything against a professional (or anyone, really!) who isn't involved in your every day life.
It's critical to follow your gut. The doctor treating your child isn't communicating well with you? Find another. Your child cries and cries when one particular therapist comes to the house - but doesn't cry for any of the others? Find another. The social worker assigned to help you isn't really helping you at all? It really is okay to find another. The worst thing you can do is to internalize things that people say or do. And I think your biggest downfall in getting used to having a child with special needs will be expecting people to make it better with their words or actions. They will fail you every time. YOU have the power to change your perspective and your feelings - and YOU have what it takes already to know what is best for child. It may not feel that way, but it's true!!
The other day, a friend posted this quote on Facebook and I felt it really summed up my philosophy:
“If you don’t have garbage, you have nothing to use to make compost. And if you have no compost, you have nothing to nourish the flower within you. You need the suffering and afflictions in you. Since these feelings are organic, you can transform them and make good use of them.” ~ Thich Nhat Hanh
Having a child with special needs is not easy. No one will every say that it is. And you will have feelings of anger, resentment, grief and sorrow many times along the way. Don't stay there. Use those feelings to empower yourself into action. The more positive YOU are about your child's possibilities... your child's future... your child's daily life... the more positive OTHERS will be, too. I promise you this is true. Take this blog for example. I can make a fuss over something simple like this photo which, to any outsider would not be a big deal. But because of this community I've created, everyone knows that this photo is a dream come true for our little family. Seeing my two sons holding hands and walking together? There's nothing like it. And because I shared, people can celebrate that moment with me. I can assure you - feeling the excitement of people over this photo empowered me as Gavin's Mommy.
And because I have created a space where Gavin (and Brian!) are celebrated and lifted up and encouraged on a daily basis, people want to join in and participate! People love to be a part of positivity. Create it - and you will attract it. You'll see. And you'll see a difference in your child, most importantly.
Positive energy is contagious.The professionals that will come into your life are people first. Make sure they know your child. Not just know the diagnosis or the features or the medical conditions. Make sure they know your child. Get them excited to see your child. Include them in your child's great accomplishments so they feel like they are part of this great ride into the future.
Just don't expect them to make it better for you. Truly, the only person that can make anything better for you... is you.
With every good wish for a positive future,