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Before I Had My Son, I Wish I Had Known…

The biggest surprise for me after having my son was how much control other people wanted over decisions involving him. This came up quickly as he struggled with gaining enough weight from the day he came home from the hospital. Family members wanted to attend doctor’s appointments. Everyone seemed to have an opinion on how we could fix the problem. Some of them were insistent we created the problem ourselves by not following their “expert” advice. None of this was true of course. He was eventually diagnosed with Noonan’s Syndrome which is known to cause all sorts of growth difficulties and not just poor weight gain.

Looking back, if I had known going into it others would be so pushy and insistent to the point of blaming I would have more resistant about having outside involvement in our son’s health concerns. Though, I’m not sure that would have even helped long-term. After all, they probably would’ve tried to exert their influence in other ways if they hadn’t been using all of their energy they way they did. I recommend first-time parents set boundaries early and often. It’s your child. Don’t let anyone else tell you how to raise them.

What do you wish someone had told you before you began having children?

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A Change of Approach

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.

  1. Provide important and timely information
  2. Share our struggles and progress, good news and bad
  3. 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.

You’re Not Alone

It’s been a rough week. There was so much violence and death reported on the news it’s difficult to even register the full gravity of it all. On top of that, loving parents on vacation with their son learned the hard way that, in Florida, deadly efficient predators lurk in water so shallow even adult fish would prefer not to swim there. Did I know that before this week? Yes, I did. Would I expect anyone else to know who doesn’t live in the areas these predators thrive? Absolutely not.

Next week we meet with therapists and a teacher from our state’s early intervention program to discuss our son’s progress and our goals for the next year. He was tested last week by neurology and the teacher. It was devastatingly obvious he’s behind. How far behind is difficult to discern. Neurology told us he’s performing between 18 and 24 months in general. The teacher gave no hints about what she thinks. We’ll find that out next week.

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Networking Opportunity

Networking Opportunity

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!

A Special Bond

A Special Bond

Mothers frequently have a unique bond with their children. Something about being “Mom,” or “Dad” where he’s the primary caregiver, creates a connection with your child which cannot be broken. Mothers who adopt have it as well, as does anyone who serves as a child’s primary caregiver. The unbreakable tie between you and your child becomes stronger when your child has medical difficulties or special needs.

It’s not that these caregivers love their children any more than anyone else. It’s a strengthening which increases the sensitivity of both Mom and the child to the connection itself. It’s as if you can feel your child’s presence through a sixth sense. Their emotions are as clear as day. Personally, I frequently become tired when my son gets tired even if he shows no outward signs of fatigue. If I take a nap while he’s sleeping, I wake up around the same time he does.

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Life Goes On

Life Goes On

As some of you have already noticed, I’ve been publishing a little less frequently this past week or two. This will probably continue through early October because, well, life happens. Our son is continuing to do well. We have a lot of doctors appointments in October, but nothing we can’t handle. Unfortunately, our son’s need for additional attention and care doesn’t preclude other things from happening.

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No More Judgement

No matter what you do, people are going to judge you. It’s the culture we live in right now. There’s this overwhelming expectation that everyone needs to be perfect at everything they do.

  • Kids play sports? They have to win, and nothing less will do. If they don’t, something must be wrong with the coach.
  • Your kid watches TV? Well mine doesn’t, and I don’t think yours should either. You must be a bad parent.
  • Your kid doesn’t do well in school? Well it must be the teacher’s fault, because there certainly can’t be anything wrong with the child.
  • What do you mean your kid is struggling with health problems? Since I can’t tell they have health problems in the two minutes I’ve known them, they must be fine!

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Why My Child Doesn’t “Look” Like They have Special Needs

I love this! It’s so well explained. I’m frequently in this situation with my son since he mostly struggles with eating and gaining weight. It’s not obvious to strangers he has a feeding tube, and his therapy has significantly lessened the harmful effects of his hypotonia.

Special Needs parents often get many comments about why their children “look” fine. Here is my answer to why that is for my children and many others.

Source: Why My Child Doesn’t “Look” Like They have Special Needs

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