The hardest thing about being a special needs mom

Some days you feel like a rock star special needs mom. You have your crap together. You are having breakthroughs. You feel hope because of this medication, that therapy, or that service. Maybe you recently finally got your diagnosis. Everything is finally making sense.

Other days…not so much.

The day starts rough and just goes downhill. You just need a freakin’ break but your child’s behavior isn’t allowing it. You’ve tried all the interventions and you are just intervention-ed out. It’s 10:30AM and you are balled up sobbing in a corner at the YMCA because everything is just going so horribly wrong. You feel hopeless, depressed. You feel totally alone. Like no one could ever understand just. how. hard. this. is.

Finally, you remember this:

You take some long, slow deep breaths. You pull up your big-girl special-needs-mama panties. You hit the bathroom and splash water on your face. You turn on some calming music, grab yourself a cup of coffee, and try to breathe in sanity while some saint of a child care worker tries to get your child to do kid-yoga so you can have a minute to yourself. She comes back 30 minutes later to let you know all is okay. She’s available any time to do things 1-on-1 with your child so you can have a break. And even though not another 5 minutes later you are picking him up after getting in yet another fight, her kindness is a bright spot in your day.

The truth is… being a special needs mom is so daggone hard. But even in those moments, balled up in the corner of the Y, you can stop and know that around the globe, other mamas are feeling the exact same way.

I asked some mamas on my Special Needs Survival Facebook Page to share with me the hardest things that they deal with as a special needs mom. Their responses were so encouraging. I related to every single one. I know that today, of all days, I needed to hear these words to know that – regardless of what my brain is telling me, I am not alone.

Finding patience with society’s ignorance, drawing strength for my little’s struggle, having peace in the storm and balance to fuel it all.

Feeling helpless and undefeated!

The unpredictability. Just when you think you *might* have a handle on things, it no longer works.

Trying to keep up with both of them and their high demands. Also people judging my parenting style.

Being patient being able to ignore and making sure your child knows you love them no matter what. …now I’m dealing with an adult with autism, and sometimes it’s just hard.

Being patient for sure.

The answer to this changes as my child grows and the seasons change. Balancing responsibilities of work, home, appointments, medical needs, finances while creating a positive, safe environment for growing, learning and playing. Trying to maintain patience and strength to make the most of each day as it comes without becoming overwhelmed with the big picture.

Being patient and keeping calm.

Keeping “normal”. Normal. And the extreme early mornings. Lol

Watching as teachers, administrators, parents and others who have devoted their life to children– miss the boat completely when it comes to understanding your child and seem to have a complete lack of empathy for their struggle (Or ours). My heart breaks 100 times a day and it takes all of my strength to resist shaking some sense into people.

No one understands they daily struggles.

No family support system.

One of the hardest things is being judged by everybody. Not just neurotypicals but other special needs people/families as well. There have been many times when we felt like we just don’t fit in anywhere. Many times we are judged for what we do or don’t do and how we do things with our kids. Like “Do you do the diet?” because my son has autism and is intolerant to gluten and especially casein we get the judgments like as if I’m trying to cure my child’s autism by doing the “diet”. Which I am not. And if you do a certain kind of therapy or if you don’t do that therapy. And if you have your child in a specialized school. There are so many things. It’s ridiculous.

People telling me my son doesn’t have special needs.

People understanding.

Getting help with the kiddo so I have some me-time, self care, a coffee date with a friend, just some time ALONE.

Feeling helpless when my son complains of pains.

Using all your patience on your child and there is none left for much else .. not having any help/rockin’ it solo .. there might be a list, but I will stop there.

People judge. Don’t understand.

Having had a child with ADHD 30 years ago when there was virtually NO information available and everybody assumed you were a bad parent. There were no tools. I had 1 book that addressed it. There are so many more resources now.

Feeling like I’m doing it completely wrong and totally defeated. One step forward ten back.

The worry about the future.

Other people judging.

Having to be on all the time.

Worrying about when they grow up and how they will be as an adult.

Feeling defeated and having to fight the system to get help for my son.

Watching him struggle to make friends.

The feeling of isolation.

Watching my son’s heartbreak when he doesn’t understand something or can’t express something because he’s nonverbal.

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