Having a child with medical or other special needs can be overwhelming and expensive. Not knowing where to find resources is a common reason children and parents don’t get the support they require. I wish I could transfer everything I’ve learned over the past few years to you. My book is a great resource, but even it doesn’t cover everything exhaustively. Trying to address every challenge all in one place would have made it so vast and unwieldy it would’ve been unreadable.
The vision of this site has always been to help parents of special needs or medically complex children thrive. The devil is in the details, as they say. This came down to three main pillars.
- Provide important and timely information
- Share our struggles and progress, good news and bad
- Help parents find products that can make their lives easier
The first two are primarily driven by writing and they’ve been going well based on reader feedback. The third has been significantly more difficult. Setting up a retail store was not as easy and straightforward as it sounded. I made the attempt but getting a wide range of products and offering them at competitive prices while also taking care of our son wasn’t practical.
My most recent attempt to satisfy this last piece of my vision for the site was to partner with Amazon. I’m happy to report it seems to be working well and I hope it continues to work well into the future. There are a wide variety of products, I don’t need to stock the items, and Amazon handles the shipping. That said, it’s still our store. We choose what to list in the store. The products in the store have been recommended by other parents who have used them or we have used them ourselves with positive results.
If you’d like to recommend a product there’s a page for that.
If you’d like to take a look at the products in our store there’s a page for that too!
If you have any feedback please feel free to share it with us. We feel that to meet our overall vision we must be successful in all three pillars.
This is the number one question we hear from family members and friends. It doesn’t always come out explicitly and sometimes it’s not even clear. I can see it in their eyes. They want to help and they have no idea how. They feel powerless and it doesn’t feel good. It’s uncomfortable, confusing, and frustrating.
It makes it even more difficult that we don’t always have an answer. Feeding our son isn’t as straightforward as it is for most kids. If someone does watch our son for us we need to be back before it’s time for him to eat. Some aren’t comfortable watching him at all because they don’t understand what it means to have a feeding tube or how to handle an emergency.
First, congratulations deciding you’re willing and able to take on a vacation. I personally find the idea of going to some other place foreign to our toddler and trying to stay there for more than just a few hours terrifying. Staying the night is quite an undertaking. We’re planning to do it for the first time this summer. Anyway, the whole process is scary enough without forgetting something so here’s some helpful information on how to pack for your adventure.
If you touch it on a normal day for your child it needs to go with you. Find a way to mark items with brightly colored tape or maybe placing them in a certain place. The last use of the day means the item gets packed up. This does make packing an all-day process, however, it makes you much less likely to forget things. When I pack myself I do it a few days before we leave. That way I don’t forget anything I need to be comfortable in the process of making sure my son has everything he needs to eat and stay healthy.
This blog is visited and read by a wide variety of people from many different countries. It’s followed by parents with children who have special needs or are medically complex, adults who are themselves chronically ill, and people with no serious health concerns who enjoy following our journey. I can’t help but think my readers would be interested in each other as well. Many of the parents and chronically ill readers don’t get a lot of chances to network in person.
If you have a blog a re-blog would be helpful. Also, please share on Facebook and/or Twitter if you have an account. It’ll enable this to reach a larger audience. I’m interested in connecting with new people as well. Even if you don’t blog, readers are also welcome! Just comment with your name/handle and any contact information you’d like to provide. For us bloggers it’s usually our Facebook page, Twitter handle, blog address, and similar. It can be as simple as, “here is my name, friend me on Facebook if you’d like to connect.”
I look forward to hearing from many of you and connecting with different social media accounts if we haven’t done so already. Here’s my info:
Facebook Page – https://www.facebook.com/strugglingtothrive
Twitter – @ashleybergris & blog posts only @helpmomsthrive
Pinterest – http://www.pinterest.com/abergris
Gumroad – http://www.gumroad.com/abergris
To save the blog for later reading you can follow via WordPress, sign up with e-mail, or bookmark the page.
Thank you for visiting!
Mother’s Day is coming up. The normal hustle and bustle already started. Everyone’s clamoring to find the best gift. What the Mom in your life really needs isn’t more things (unless she’s asked for them of course, then please buy them for her)! She’ll appreciate the thought of these so much more.
I took a huge leap last week and put in my two weeks notice. My supervisor and I had both been putting off the decision hoping my son’s health would improve and I would be able to return to work. The kid has made tremendous progress but still falls short of where he would need to be to be placed in a childcare center with other kids his age.
I have mixed feelings about the whole thing. Keeping my job would have been my primary goal prior to having our son. Having a child didn’t change that significantly but there’s more to it than that. Now I have a child that REALLY needs me. It’s not a change of heart as much as it’s a change of circumstance. I didn’t know my son would have low muscle tone, a feeding tube, and feeding difficulties when we decided to have him. Now that I know, it simply doesn’t make sense to leave him unless there are no other alternatives.
Depending where you live, you’re going to see a lot of snow this weekend. It’s coming down heavy. There will be high winds and low enough temperatures to ensure the roads will be impassable for some time. There are standard rules of thumb to follow. Have batteries, a radio which takes them, enough food, and a gallon of water per person per day. Typical preparation is for three days. We have our kids to think about, though, and they can require a little extra preparation.
Check your supplies. Make sure you have enough formula to last you through the weekend. Verify you have a spare of whatever might need replacing in the case of an emergency. Expect the power to go out. It’s probably too late to get a generator now, but if you need uninterrupted power for medical equipment, make plans with your admitting physician ahead of time to have a direct admission in the event of an outage. Don’t forget the gas for the generator.
It’s a neverending battle. You work your butt off from the moment you wake up until the moment your child goes to bed, and then at least a little bit more afterward. The laundry is done (or, at least clean…), something to eat for dinner has been provided (thank you slow cooker), and now you’re thinking longingly of your bed. Yes, bed, that unattainable paradise where you may get a few hours rest before cries for your attention ring through the house at some hour of the morning which allows for less, and sometimes significantly less, than eight hours of sleep.
Where could time for your partner ever fit in? There aren’t enough hours in the day to get everything done as it is. I propose you don’t do chores while your spouse is awake and home. That’s right, if it takes more than a minute or two, then just skip it. For example, switch laundry over but don’t fold it (if you ever had time to fold it in the first place). Cook in the slow cooker instead of slaving over the stove (or microwave). Clean up that puddle of vomit on the floor, but don’t break out the carpet cleaner because you see several other spots just like it scattered across the room.
I highly recommend anyone with a child who has complex medical issues or special needs purchase a basic medical ID. There are a lot of different kinds available. There are adjustable ones with velcro and watch bands. For the fashion forward there are adorable combinations of pink and blue bracelets. You can choose to engrave the details on a plate. Some have a pocket where there’s a little piece of paper you write on. Whatever method you choose, children with special needs and complex medical issues NEED a Medical ID.
Why? You might be incapacitated by the same thing that injured your child or your child might not be with you. Then…
- Drug allergies will not be discovered until the drug is administered.
- If your child has an implanted device, such as a shunt, no one will know to check right away if it’s been damaged.
- They may offer your child who silently aspirates food or drink.