When I first realized my daughter wasn’t developing, at the rate of her peers, I was crushed. The heartbreak and fear of the unknown future, for my child, consumed my every waken thought (of which there were many, since we didn’t sleep….EVER). I pretty much spend my days keeping my daughter from banging her head, smearing poop on the walls and trying to soothe her seemingly never ending screaming and crying. Of course the house was falling apart around me and guilt towards my son was eating me up. Friends and family were unwilling spectators to this nightmare. Some offered to help, some didn’t. It didn’t really matter, because when asked what I needed, I couldn’t say; I just wanted it all to go away.
A few years into this journey, I have gained some insight and can now articulate what I needed, when things were at it’s worst:
- KNOW YOUR AUDIENCE. If your friend is crying about her child being 3 and still not walking; please don’t take this opportunity to tell her that your Johnny just took first place in Karate.
- INVITE HER OTHER KIDS OVER. Take them to the zoo, the movies or fishing. Your friend will be so grateful that the sibling is having a good time. That will remove the guilt feeling for a few hours.
- COOK EXTRA. You have that crock pot out anyways. Put a few meals in her freezer.
- GET HER BUTT MOVING. Team up with another friend, who will watch the kids while you take mamma on a brisk 20 minute walk. It does wonders for the mind.
- NEVER EVER RUN OUT OF XANAX. Your friend don’t need to have her own prescription; she would be shooting heroin straight into her eyeball before Christmas! Be her bi-monthly hookup.
- BE HANDS ON. Learn the principals of whatever therapeutic program she is doing with her kid. Jump in a few times a week. Even 15 of therapy, with a fresh well-rested person, is VERY beneficial for forming awesome neurological connections.
- DO THE RESEARCH. Don’t say something like: “I heard something about a boy who did something with a horse, and now he is better”. Spend a few moments, look it up and present it like this: ” I heard about Equine therapy. It’s riding therapy, where the child form a connection with the horse, and the specific rhythm between them, help form new pathways in the brain. I looked into it, closest place is ****, it costs *** and they have openings Wednesdays”.
- ASK QUESTIONS. Ask why her child flaps, spins, rocks, looks away or bite themselves. Armed with information, you can also better explain to your kids: ” Lisa likes to rock because it makes her feel safe.And she screams every time the doorbell rings, because she has super hearing and it sounds to her like a bomb went off”. that can help bridge the gap between “typical” kids and the special needs child. Their interaction is just as beneficial as top-notch therapy.
- DROP THE PLATITUDES. “Ah, it’s going to be alright”, “God don’t give you more than you can handle”, “Special people get special children”. I know you mean well, but CUT IT OUT! It is as annoying as, when people at funerals say: ” God needed another angel”. Tell it as it is: ” Yep, this sucks. It’s not fair and I understand that you are scared and upset”.
I know that we, the parents of special needs children, can come off as martyrish victims. I guess it’s because we are. We just need to go through all the stages of grief: Denial, anger, bargaining, depression and acceptance. We all move along at different rates, but one thing is for sure…..we cannot do it without you!
Thank you. I found this really useful for me. My friend has an 8 year old diagnosed with asbergers and like you she doesn’t always know what she needs from her friends in the way of support so it can be difficult to know how to help. Think I’ll make her family one of my infamous cheese and onion oat pies. I would never have thought to take some pressure from her dinner time. Thanks.
So thoughtful of you. It is always easy to help someone who is going through a ‘rough patch’. For people with special needs children, it is a hard road that last several years, sometimes a lifetime.