It has been a good while since I have written here! One of my 2021 goals is to use my voice to advocate. I posted on my social media outlets, asking special needs parents to share what their family members and friends could have said that would have encouraged them in the early days of their child’s diagnosis. I hope these answers below can be a helpful resource.
Recognizing my broken heart. That the pain is real and doesn’t make my child any less incredible. Also, then showing me how much they loved my child. Making an extra effort to love on both him and me. –Samantha
I wish they wouldn’t have been so afraid to ask questions or want to be around. Our son has autism and often times can get loud when excited. When he was first diagnosed, everyone kept saying, “I’m sorry”. I wish they would have said, “He’s fine and everything is going to be great” because he is fine and some days really are great. He has taught me so much. –Rachel
Get started on resources that can help you for the future, such as schools, therapy, and respite care. – Inas
My family was really supportive actually. It was more the doctors and other acquaintances that apologized to us that they didn’t see his diagnosis before birth and avoided us instead of celebrating our little one’s birth with us. The lack of celebration was the worst. He is worthy, and deserves to be celebrated. But like I said, family was great and really supportive. – Joy
I think the hardest thing was that they would make comments like, “my son had that problem”, which downplayed what I was going through. I think it would be more helpful if they had said, “That sounds hard, can I take you to lunch? I’d like to hear more about what is happening.” –DeAnn
I can give you a lot of comments I wish they wouldn’t have said. I wish people would have just listened and been supportive instead of acting like they knew everything. – Sarah
My sister was special needs. This isn’t the same as being the parent by any means, but I wish someone would have told me it is hard. That at times, I would want to fight and hurt people who made fun of her. That is was okay to be embarrassed and angry, as long as I had her back in the end. – Ashley
I think it would have been helpful to know more people in the community that can walk through life with me. Just someone to talk to who understood. More supports to know where to go for help. – Becky
I wish I would have been told that it’s okay to grieve. To grieve the life I had planned during pregnancy. To grieve all the hard things about what this diagnosis meant (for us, it was autism). That I didn’t have to be “okay” right away. Too many people tried to give me platitudes and clichés that meant absolutely nothing to me. It wasn’t helpful. I wish someone told me that it was okay to be scared, but that I wasn’t alone. I wish I had realized earlier on that therapy wasn’t about “fixing my child, but rather enabling him to live to his every potential, and also that he did in fact have potential! I don’t know that I would have listened to it if someone told me that, but I wish I knew earlier. I wish more people had been able to point me to the greater hope I have now that one day, God will make all things new. – Sarah
Arbor Day Every Day 