We have all felt this way at one time or another. Day after day of fighting the fight can get old. It can be taxing to the mind, body and spirit. It doesn’t matter if you are fighting for your health, fighting for a dream, fighting for success at work, or feel like you are fighting the world to raise your children.
We open up the paper or our favorite news app and read negative after negative. This one shot these people. This lawmaker did this horrible thing. This caregiver did this unthinkable thing to this child. This teacher was found to be doing this in secret. You get the idea. Our world is full of struggles, our lives are full of struggles and for those of us who are desperately trying to help our children with special needs, even our homes are full of unimaginable struggles.
Today was a rough one. It was full of high hopes and crushing pitfalls. But I can’t let it get to me. I can’t let it get me down. I can’t let it beat me.
The day started in the usual way. We gave the boy his cocktail of supplements. He has dozens of food allergies and is on a special diet called GAPS to help him stay healthy. It’s a rough diet and I will tell you all more about it, but not today. So we give him his AMAZING probiotic (that I take too cause it is THAT good – I kid you not) that has helped him with his gut health. I run the diffuser with essential oils that he loves and we just sit back and wait to see what the day will bring.
We don’t plan things when the boy is home from school. We can’t. If the boy is having a great day then it’s lovely. We can accomplish things at home and have some amazing family time. If not, then we can’t. Oh man can we do nothing but spend the time trying to make sure that everyone is safe. Trying to figure out what is wrong with the boy and how we can help him work through it. Is he in pain? Is he overwhelmed? Is it too loud? Is he hungry? Is he bored? Is he getting sick? We have no idea because he can’t communicate. He can tell us nothing about how he feels and the frustration that poor child feels must be more crushing then I can imagine. More crushing then the physical pain I experience as he is biting my hand, pinching my arm or stomping on my feet.
And it breaks my heart.
I can not stress enough how important it is to have some sort of support network. It needs to be set up before you ‘need’ it. It needs to be in place and ready to rock for you when the time comes. Why? Because you will need help one day and you don’t know when that day will be. Trust me. I was there. Thinking I’m fine and don’t need anything. I had the mindset that it wasn’t that bad and I have my husband so I’ll be fine. And then I wasn’t anymore. It was a switch and I was done.
When I am at my wits end, as I am today, I have an amazing group of people I can turn to. I have never even met any of them in real life. There is an online TACA support group that I can go to and there is a Facebook group based off of THIS website that is amazing as well. They help me to figure out what is going on with the boy. They give me hope and support. When I feel like I just want to give up because the boy has spent the day melting down, I can go to this online community and cry. I can tell them how I feel defeated and tired. I can tell them how overwhelmed I am and they GET it. This amazing group of people come beside me and help. Yes, some just send me virtual hugs – and they really do care. More than once I have read another mom’s story and cried while sending her words of encouragement. Some of them tell me that they have been there or are there right now. They offer advice. They help me to see past my pain and my first person view of everything. They help me to look at what is going on, and I suddenly have over 13 thousand people who are familiar with Autistic struggles helping my son.
Suddenly I have a village.
And it’s a good one 🙂