NOT HAVING A GOOD SUPPORT SYSTEM!

When you hear my child has________! Asd, intellectual disability, type one diabetes, neuro sensitivities, or adhd  to name a few it's a great idea to have supports in place. What this looks like for you may vary from person to person. 

Yes, your partner should be considered a type of support, but you also need an entire community of supports. what I mean is you need to think about yourself to. If you're not taking care of yourself and your relationship to things can go downhill fast and burn out is real! I will not get in to the relationship of marriage or tell you what you should do with your partner this is for the parent that is hands on most of the day home and waiting for a call that there child was acting up at school and wont calm down, The parent that has to always be on top of everything to make sure the kids are doing everything to grow as they should mentally and physically. Not the parent who works all the time and is physically away. 

As parents to special needs kids, we do everything in our powers to make sure that we are doing everything for our kids, but you know it's exhausting. I don't get 8 hours away from my kids. My son is in part time school. At the current moment he goes until 1pm but I have been called 3 times this week due to behavior. He has poor communication skills and prefers to flip kids off and run away. Yes, we talk to him every day about the importance of talking through what's going on why he is upset but at some point, talking no longer works. Getting him to understand that life is filled with many types of people, attitudes, etc. is a big thing for him to grasp. Yelling is a big no with him, and he hates the sound of me and sister's voices. Yes, he has headphones but no he doesn't wear them most of the time.

               Constantly dealing with the ups and down in both of my kids without outside supports have been very hard. Not to say We don't have some supports we just don't have enough. I don't live close enough to family for anyone to help for 3-4 hours a week so me and my husband can have a date night. My family is 3-6 hours away. To drive them to a relative go, have a date night pick them up etc. too much let alone any resources in the town we live in to assist with autistic kids. I recently started a support group on Facebook called "Parents helping Parents" as a community of like-minded people to talk to one another and bounce ideas off each other about how to help but honestly the chat rooms of how people can help is one part of it. I am seriously thinking of starting a nonprofit to help parents in my community with special needs kids to be able just to get a date night with their spouse or have a "ME" Day. So, we can recharge our batteries and fill like what we are doing as parents matters that we matter.

            Talking with other parents allows you to come up with new ideas on how to better parent your child. Ideas that you may not have come up with on your own. Things that may not have worked for you but can benefit someone who never thought of that before. Thats all great but now you have to implement the new plan. What approach will be the most beneficial for all involved? Are these ideas worth the risk?  Then you worry about the resources and can I even trust this person on the other side typing all this stuff. What if they don't even have kids at all with a disability? What if I take Somone's advice to heart and it doesn't work what if it does? Does any of this make me a bad parent? It's a constant mental struggle.

We started with just my husband and I. After a few years of going, it alone I had to change some things because I was filling very overwhelmed and like I didn't matter. I joined an online ASD community but right away noticed that a lot of bots and ads were in it as well as a person stalking profiles with fake accounts. Not the greatest place to be. You have a lot to sift through. Then you start connecting to real people and their struggles and stories and can relate to them and that's how you build a good foundation for a community. Networking and putting yourself and your story out there so that maybe you can help one person know they are not alone. They are validated as a person and what they are doing to better their family and watch them grow they are worth it.

                    Blogging is the next support I took for myself. I have a lot of thoughts and ideas about what I am going through, and it helps to tell the stories. I often wont when I am in the middle of an issues or were over scheduled because it takes a lot out of me, but I will post when things calm down. Blogging not only helps me but it also helps my family because I am not holding on to the event longer than I need to and it also helps someone who's going through the same thing.  Thats my current supports. I know it will get better. 

Remember to be kind to yourself. We are doing the best we can.

Anne Goehler