In Case of An Emergency

In Case of An Emergency

I worry quite a bit how my family would respond to the fire alarm going off unexpectedly. Would they freeze, would they hide? Which ones would respond appropriately? My seven-year-old has been known to cry during drills at school, he cannot process the loud noise… and he is one of my typical children! One of my friends recently scared the pants of her five children by intentionally setting off the alarms and having a drill about an hour after they had gone to bed. She said it was frightening to see that some of them just froze! I thought this was a great idea and I plan to scare the pants off my children in the same manner sometime in the next few months. But if I am worried about my typical children, what about my sweet daughter who may forever function on the level of a one-year-old? What if there is an older individual under your care? Many cities have programs where you put a sticker on the home windows of people who are impaired in some manner and might not be able to get out of the house on their own. I know my state has a registry as well. You might want to see if this is a service available to your family if this is a concern. A simple Google Search shows me that there is likely one for every state. But what about car accidents! What if you are unconscious and someone comes to help your special needs child. How will they respond, what will they do? There are a few different medical alert...
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...
Alternative Therapies for Special Needs: Personal Experiences

Alternative Therapies for Special Needs: Personal Experiences

I love Chloe exactly as she is, which is why I often struggle with the idea of trying to “fix” her. Obviously, though, anything – or almost anything – we can try and see if it helps her, we are and always have been willing to do. I say almost anything because of the possible risks associated with different alternative therapies and, unfortunately, what it usually comes down to is the cost. So if something appears to be not too risky and is something we can afford, and especially if I have seen or heard of something helping someone else, then we will most likely try it for Chloe. Here is an overview of what we have tried and a few that are on the radar to try if/when we can afford it. Each therapy type is linked to an external website providing additional information. Anat Baniel Method (ABM) : According to their website, ABM, “rather than try to force children into developmental milestones they are not ready to do successfully, which can groove in their limitations even deeper, [this] method wakes up the child’s brain to create new connections, often at a staggering rate, leading to spontaneous, often extraordinary breakthroughs in movement, thinking, self-regulation, and connection with others.” I had heard a lot about this method through different online support groups and it couldn’t be ignored that this therapy was working wonders for other special needs children. So, despite significant financial constraints at the time, we decided we at least needed Chloe to try it once. One half hour session later, I was  convinced this could be a game changer...
A World Without Loss- Suicide Prevention

A World Without Loss- Suicide Prevention

“Oh sad…” I observed out loud to my mother the other day as I was looking through FaceBook on my phone. I continued “… someone died.” My mom seemed shocked, “who!?” “A baby, it happens all the time, babies die, and it’s sad.” I said. She said “It doesn’t happen all the time in my world! I wish you lived in a world like mine where babies don’t die all the time.” That’s just it. It is my world. Special needs kids die all the time… not only in my local support groups but the world is small, we are close together now. Because of my associations, those I have made through Dylan, I hear about children dying all over the United States, or beyond. Often. Far too often actually. And it’s been a bad winter. It’s hard, and it’s sad and it’s stressful. But nothing broke my heart more than hearing of a special needs mom who chose to take her own life last week. She left behind five children, three of whom have some kind of special needs. Can you imagine the heavy load she must have been bearing to leave her family? The despair? Oh, it’s horrible, and I tear up thinking about it again… and again. I can’t stop thinking about it actually. Not only do babies die in my world but moms do too? I can’t handle it. I get it, sometimes the stress is unbearable the divorce rate for special needs parents is through the roof. But we don’t have to do it alone, we have each other. I am glad I have...
Assistance Dogs for Children With Special Needs

Assistance Dogs for Children With Special Needs

Our first real experience with an assistance dog was at a children’s hospital when Chloe was staying there for a few days. Elliott, a big black labradoodle, came to see her several times and she just loved having him as a visitor and getting to pet his soft, curly hair. Elliott’s handler gave me some information on assistance dogs and I started gathering information. There are several types of assistance dogs: guide, hearing, service, seizure response, and emotional support (therapy). I’m going to highlight a few types that I think might apply to most readers on this site. Service Dogs For Chloe, I decided to look into a service dog, which would primarily provide physical or mobility assistance. Service dogs can be trained to do different things for children with special needs like picking up and/or carrying items they might need, turning on lights, etc. Companionship, comfort, and increased self confidence are major bonuses, but not their primary purpose during training. Assistance dogs are typically trained and certified by an organization and are legally allowed full public access under ADA regulations. This would include school, doctor’s offices, hospitals, shopping centers, etc. Many service dogs are Labradors, Golden Retrievers, or Labradoodles (for those with allergies). In order to be allowed full public access, the dog must wear a special vest and be accompanied by the child they have been trained to serve. Therapy Dogs Therapy dogs are typically put through obedience training and provide companionship/comfort, but are not trained on any specific tasks for the child. Therapy dogs are not given public access rights like service dogs, but can still be...
Dr. Google

Dr. Google

That’s right, mom’s out there checking Google again, typing in all of the symptoms, hoping for a good match, hoping to find some answers. Don’t scoff! Don’t laugh! Yep, we are those parents, those people who are always trying to diagnose on their own. We are the ones desperately seeking answers any way that we can and fortunately for us, we have a ton of information at our fingertips. We are the parents who want to find answers as soon as possible. We are worried, we are sad and we are scared. The truth is, Google MD is invaluable to special needs parents. We deal with rare cases, so rare, there are no specialists for what we deal with. I believe, we are more likely than a doctor to find an answer because we are the ones who want an answer the very most. This morning I read a story in a support group about how a doctor wanted to find an answer for a pediatric patient and was able to determine the rare diagnosis the child has simply based on her own investigation. The doctor had never heard of it and it’s extremely rare. The diagnosis has since been confirmed and doctors are working closely with this mother who’s child has lived longer than any other child with the same diagnosis. Even doctors are using Dr. Google for kids like ours. I have had my own experience with Dr. Google that paid off. When Dylan was tiny she started having spasms, quick, frequent movements that seems to follow a rhythmic pattern. There I was, at the computer Googling,...