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<\/p>\nYour child was recently diagnosed with a disability. You may feel confused. Or relieved. Or scared. Or overwhelmed. All of the above? That sounds about right. This is a big moment. But our children with disabilities are\u2026 our children. Let\u2019s talk about how to get through the experience of getting a new diagnosis so you can keep being the best parent you can be to your child.<\/p>\n
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Give yourself room to breathe.<\/p>\n
You\u2019ve just gotten some important news. Maybe it\u2019s a shock, or maybe you\u2019ve known for a long time that this diagnosis was coming. Maybe you even have the same diagnosis. It can still feel like a big deal. Each time one of my children has gotten a new diagnosis, it has thrown me for a loop. You need a minute.<\/p>\n
Try not to jump right into action. It will probably feel like you need to do everything right now to support your child. But in most cases, the diagnosis is not really an emergency. You have time to take a breath, and you probably really need one.<\/p>\n
\nShift your perspective.
\nWhen you get a new diagnosis it can feel like everything is collapsing on top of you, but the reality rarely looks or feels that way, and here\u2019s why:<\/p>\n
Having a disability is not a tragedy. A disability is not the sum of who a person is.
\nGo read that again. Louder this time for the cheap seats in the back.<\/p>\n
When you learn your child has a new disability diagnosis, it might feel like everything has changed. And that can feel hard and scary and sad.<\/p>\n
But there is so much more to this story.<\/p>\n
You have your beautiful child. They are still the same person you have loved since you met them. It\u2019s just that now you know them better and you can start to understand how to meet their needs in new ways as you make dinner and argue over toothbrushing and tuck in your toddler for the 15th time tonight or blow kisses at the back of your teenager\u2019s head as they ride away on their bike.<\/p>\n
And don\u2019t forget: the only constant is change, and this is especially true with children. The disability may not change, but your child\u2019s behaviors and needs and feelings \u2014 and your feelings \u2014 all will. This may feel overwhelming right now, but it won\u2019t feel that way forever. I promise.<\/p>\n
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\nFind your people.
\nWho are the people who have supported you as a parent? Who are the people who just adore your child? It may feel hard to talk to anyone about this, but support is really important right now.<\/p>\n
Start with your inner circle and tell them what you need from them. Someone to listen. Distraction. A cup of coffee left on your doorstep one morning. Whatever it is you need, let your people know that you need them to be there for you and your child right now.<\/p>\n
If you are a person who struggles to ask for help (so many of us do), find someone who can ask for help for you \u2014 maybe a close friend or partner or a sibling.<\/p>\n
Surround yourself and your child with the people who can show up for your family in a way that feels like love.<\/p>\n
Find some role models.
\nFind some adults who share your child\u2019s disability or important elements of it. We all need mirrors.<\/p>\n
The adult role models I have met have helped me understand so much about how to meet my children\u2019s needs, and just as importantly, how to see all of their strengths. They have literally changed my whole way of parenting.<\/p>\n
Role models can be people you get to know in real life, movie characters, books (here\u2019s a new one for parents of children on the autism spectrum), or people who you follow on social media. Here are some suggestions for finding these role models.<\/p>\n
Learn about your resources and line them up.
\nThis is where you may start to feel like you are in way over your head. Remember what I said before about how to eat an elephant? Make a list. Figure out where you want to start and do one thing at a time. You\u2019ve got this.<\/p>\n
There are three main systems that can support you and your child:<\/p>\n
Medical or health care \u2013 this includes evaluations, treatment, and referrals. Government benefits like SSI, Early Intervention, and Medicaid (your child may qualify even if your family makes too much money to be eligible) School system
\nChoose one and start there. You\u2019ll get through them all eventually, but not if you\u2019re burned out by trying to do everything at the same time. And besides, your toddler needs to be tucked in again, or your teenager is downstairs in the kitchen having his eighth meal of the day.<\/p>\n
At different times in my own kids\u2019 lives, I\u2019ve tried to cope with my stress and worry by diving into all three and Getting All The Things Done at once. It\u2019s exhausting and frustrating and I end up missing the child right in front of me.<\/p>\n
So make sure you\u2019ve left room for the parenting part too.<\/p>\n
Become a fierce advocate for your child
\nSo much of managing a disability is managing all of the obstacles that are in the way because of people\u2019s attitudes or lack of knowledge.<\/p>\n
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