a blog about aspiring to live well in order to be a better example for my kids! It features self improvement, self care, health, and family.

The isolation of a special needs mom

The isolation of a special needs mom


A parent was only looking for support in a online support group and this parent ran into online bullies like back in high school.

I felt the ugly feelings I felt when I left support groups 10 years ago and decided to blog first it was only for myself and then I started to let others in and now it's this huge website that once out grew me and has been standing still because I really haven't been sure what direction to take this website.

I remembered why I started this website and I wanted to put this post out there for all of those other parents who ever felt like they had to leave a support group because of those haters who creep around online all day ready to pounce.

All I have to say is thank goodness for that block button

The wanting to leave a support group it is not uncommon in support groups. support groups are for a purpose but some could cross that line into cult like trends. Sadly it is a common feeling in support groups to not be the popular voice or reason if you have a different view then others but even I too have been bullied and harassed. There was one lady who used to always wait for me to get online and start in on thyroid issues another about how I had 22q yet I still had a child.

It took me years to get a back bone and tell the bullies to bugger off. To this day some people don't like me for standing up and sharing my own personal truth because it is far different then their own.

Since I am grown I will not list the list of people who have harassed and bullied me because there is no changing their minds  but I have a blocked list a mile long for the reason to avoid them. They can ghost me all they want to and ignore me that is fine by me because that allows me to focus on the people who are supportive and positive.   In-fact my Facebook group has over 1000 likes of supportive friends and people so a group of 20 people who don't like me that is okay by me. We are not all created for every one to like us.

The type of harassment I ran into was people treating me like I am a child because I have 22q11.2 deletion myself based on their limited belief on how adults with 22q function based upon their understanding and their own fears for their children.

Some people even start too toot the I know more then you do horn and competing over who has it worst then you do. 

It crazy we come to these groups for support only to be blocked and ignored like back in high school.

Did I mention some of these moms are older then I am? and do not have the same deletion their children have. 

You would think they would understand and have that compassion but there are always going to be medical fear mongrels and haters of this disorder and everything that comes from it including secretly hating their own children. An entire country wants to wipe out downs syndrome what's next wiping out 22q as well?

Do you know how common a genetic disorder is that's half the plant gone. If we started to do that. That song where is the love comes to mind.

The worst feeling is you all ready feel isolated and alone in how you have to cope on your own struggling to connect with others with the disorder and your child's disorder but then feeling even more alone because you don't fit into any one group I don't fit in I was born to stand out I am okay with that I just wish others were as well.

I wish there was not such a divide when it comes to connecting and making friends. Screw the social norms and lets just be friends and fist bump each other at all times the good and the bad.

What happen to other women being supportive of one another instead of being in competition with one another over who knows more. I don't have to share how I know this and that. I am a mom with 22q I have a child with 22q, I am sibling to people who have 22q, I am a daughter of someone who has 22q and I have the perspectives others don't often have.

I see how this disorder effects everyone differently the good parts and the bad parts. I don't like to spew the same information over and over again I like to raise awareness and just write the blog post and the books.

I had the same harassment as the person who said I am not going to stay in groups any longer which saddens me that I have to say "yeah me too"

My call to action for this blog post is to unite together and fist bump one another on not behaving like that and being open minded and supportive.

 now I focused on spending time with the positive people the ones who do not want to compete and stare.

  I am so glad I created my own tribe and have finally made a group of supportive parents and caregivers of children with 22q and other special needs. that what this blog is for all of you who want to fist bump rather then punch out. 

I will share a post and get crickets but the mom next to me or the 22q adult next to me will write the same things I am writing using my ideas and get all the likes comments and shares.

If you want to fist bump me hit the like comment and share and let's connect with other parents and people who also need a few fist bumps or two.

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Love Amanda


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