25 things that make special needs parents happy

25 things that make special needs parents happy

1 – Watching friends, cousins, nieces, nephews, siblings and more treat special needs kids awesomely because of the influence your child has had on them. 2 – Finding doctors and therapist that believe in your kids as much as you do. 3 – Realizing that when random strangers tell you how “lucky” you are to have a child strapped in a wheelchair because their kids are running wild through Target they really have good intentions… really. (This applies to other inappropriate random comments… And yes, it really happened to someone I know.) 4 – Watching something that doctors tell you will never happen happen. 5 – Then watching everyone who ever believed in your daughter say “I knew it! I told you so!” 6 – Realizing that it’s okay if you don’t do EVERYthing the therapists say you should be doing, every day. 7 – Watching how much your kids love eachother and having your son ask “Where’s Dylie?” When she’s been in bed for two minutes. 8 – Having your special needs girl completely over-react and be dramatic (just like a little girl should). 9 – Being okay that your three year old still uses a 3 month old’s binki, her teeth are never going to be anything other than perfect (for her) anyway right? 10 – Being able to celebrate the ‘inchstones’. 11 – Having support from random strangers who you now call “family”. 12 – Realizing just how not alone you really are, bloggers, support groups, “friends”. I love my extended family. 13- Finding your dog sleeping right next to your special needs kid’s bed or...
Talking to My Special Needs Child About Her Special Needs

Talking to My Special Needs Child About Her Special Needs

A few years ago, I got thinking about how Chloe is unable to move or communicate like she’d like to and all the frustration and behavioral issues that go along with that. I got thinking it might be nice for her to know why she’s unable to do those things. I realized that when other severe challenges come up in life, i.e. abuse, death, etc, the recommendation is for a person to go to counseling and talk about it. Shouldn’t that same principle apply with Chloe? So I sat her down and told her “the story.” I had told her pieces of the story before then and I always explained what was going on in the moment, but I had never sat down and explained everything. This time, she got the full scoop. I told her how sorry I was that this happened to her, but how grateful I am that she is so strong and brave through it all, that I am grateful to be her mom, and that she is an inspiration to me and many others. It was a very tender time. I didn’t just tell the story, I told parts, then asked her to talk to me about it. Even though she is “non-verbal,” she is very expressive and communicates in her own special way. And talk she did, in her own little Chloe babble language. Although I don’t know exactly what she said, I’m sure she was just getting out some feelings, and I’m sure that felt good for her. After all, we all need to vent now and then, right? Even with non-verbal...
Who’s In Charge Around Here?

Who’s In Charge Around Here?

I get it. They are sick, struggling, or can’t verbally tell you what they’re feeling…. so you let it slide. Over and over again, you let it slide, your special needs child’s behavior. I’m sure for special needs children or not, parents do this all the time, but I’d guess that with special needs children, you have a list of excuses a mile long of why you should just let it go. I sure did it and sometimes still do. It got so bad at one point, that I asked her doctor for help. He referred us, for this and other reasons, to a neuropsychologist. A multi-day evaluation resulted in this understanding: Chloe knows what is going on, is aware of our emotions, behavior, and how her emotions and behavior have an impact on our emotions and behavior. That was good news, right? Well, sort of. It meant, plain and simply, that Chloe had us wrapped around her tiny, little special needs finger. The specialist recommended we read and immediately implement the concepts taught in 1-2-3 Magic: Effective Discipline for Children 2-12 by Thomas W. Phelan, PhD. I’d be lying if I said I got right on that. I had a hard time believing a book could magically fix all our frustrations in how to handle Chloe. And I certainly did not like the idea of disciplining my angelic and “can do no wrong” child. However, living through a few more months of feeling completely out of control in my home and all social situations, I realized I needed to at least give it a whirl. Reading the book, for me,...
Wait and See

Wait and See

Because I am so open about Chloe’s conditions via blogging, Facebook, Instagram, at the store, at restaurants, you name it… many people reach out to me when they have a new diagnosis for their child, or no diagnosis for that matter. Friends of friends have been referred to me for questions and support on occasion. I’m glad to be of any help I can, though it’s very limited. One time in particular, I remember corresponding quite a bit with one mother whose experiences with her child reminded me a lot of our experiences of first learning about Chloe’s condition and all the frustrations we had during that process. This sweet mom kept asking me what to expect. “Will she do this? Will she do that? Will I be able to do this with her? What will people think? You don’t think she’ll need a wheelchair, do you?” I found myself giving the response that used to make me cringe. “You’ll just have to wait and see.” Ugh, I remember thinking that was such a cop-out answer from doctors. I thought for sure they knew and they just didn’t want to tell me the grim truth or were afraid to give me the hope I was seeking. But with a few years of wisdom (provided by Chloe) and motherly experience under my belt, I realize it’s the truth. You just don’t know. No mother really knows those things about each of their children, but especially those children with special needs. And so here I am seven years later echoing those words I used to dread yet heard so often. “Wait and see.” To which I...
“I sat alone today”

“I sat alone today”

A lot of First Day’s are happening all over the country over the next four weeks and I have already started hearing the stories. The “I had a rough first day”s. The “no one talked to me”s. The “I sat alone at lunch”es. As a mom, hearing these stories are heart-breaking! As a special needs parent – it’s even worse. If children are excluding typical children like this, what are they doing with our special needs kids? We have done what we can, introduced them in the classroom, and then sent them off, alone, in the hopes that they won’t be alone very long. With our special needs children they often don’t understand how to respond to other kids, and don’t know how to fit in. Socially, children with autism just don’t get the social cues. Never mind those like my Dylan who developmentally just don’t understand. And, for even typical children, fitting in can be so hard, worse when you think you are different or you are shy. Please explain to your kids that we are all different, some differences are just more noticeable. Whether it be something physical or just an inability to respond appropriately or know what to say. Encourage them to look beyond what they first see. Introduce themselves, ask those sitting alone to come play with the group. Or even encourage your child to leave the group to go sit with them. Teach them to not be embarrassed to say hi to a child who may not hear, react or respond to them. I loved walking into Dylan school last year and seeing kids...