These last few weeks have shown me now more than ever our families need people with needles not words. We need people who are willing not to pull at the thread holding us together only to watch our worlds unravel, but to pick up a needle and help us mend our wounds. I have taken more calls, text, emails, FB message from parents in the past few weeks then I have in a long time. Everything from insurance denials, adult placement, education issues and family stress. I will keep taking them, because we must help each other through the times that shake us to our core. I have been – and will be again that father scared for my son’s future, that husband who just wants to make the pain go away and that father who wants to provide the best world for my children. However, the simple truth is we can’t do it by ourselves. We must have menders, we must have people who would rather see us thriving not just surviving.
We need to work together and provide solutions for all our families. There are still places that I am not sure Noah would be accepted and that lends a sense of rejection to his parents and siblings. I feel the looks when we go to the store, I don’t even need to make eye contact. I don’t need a medal for having Noah with me and I don’t need pity for your perception of how hard our life is. Yes, it can be hard and yes there are tears and times where we don’t know what we are going to do next and it scares the sh*t out of us. That doesn’t mean we are victims of our life, we refuse to live captive to that thinking, it doesn’t help Noah and those who come after him.
So please look to see how you can help not by being a “Facebert” (an expert on FB/social media) or by letting us know what is “wrong” – here is the deal as parents we are probably aware of our shortcomings and we are trying to work on them. The reality is we are just trying to make sure everyone is safe. Yes, I said safe, safe from SIB’s, safe from wandering, safe from seizures, self from aggressions, safe from the world that says we welcome you unless you are 17 and still love Blue’s Clues and Dora. So please join us with your needles we need a nation of menders.
Original Post 3/27/17
Many of you have heard me speak about the beautiful journey we never knew we needed. I have always said, that does not mean it comes without pain. Today and yesterday are pain points. Noah is two days into some web stuff not working and I cannot fix it (I have many powers fixer of the internet outside of our house isn’t one). My heart breaks for my son who is in pain and who said “Noah make it stop”, you see that is the painful part of his autism he wants it to stop and as a father I want to help him. Yet, both of us are unable to ameliorate the pain, in this moment. Yes, last night was painful, a computer monitor and iPad suffered the brunt. Guess what? We all had to get up this morning and start our day and try to function.
This isn’t a post to generate sorrow, but I want people to understand parents are hanging on, their children are hanging on and if a thread gets pulled the whole thing can unravel. So if you see me or another parent tomorrow with a thread showing instead of pulling it, grab a needle and help mend our edges.