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Day 142 - Special Needs Parenting...

I spent the afternoon yesterday with some old friends. They are some of my oldest California friends. We met when our sons were in pre-school and have maintained our friendship through several moves, my divorce and mostly through our children’s issues.


They have one son who has some pretty severe mental health issues and the other son has a pretty severe attachment disorder which has resulted in him basically abandoning his family and quitting school in his senior year. Throwing away the love of his family, track scholarships and all ideas about a future that any parent would want and wish for their child.


I have my own struggles. My children have their own issues. I have always tried not to write about them to respect their privacy. But I have to share how hard life is sometimes. Parenting always hard. Parenting children with special needs lonely and the kind of hard that redefines hard. Finding myself asking the question: if our children have special needs, then don't we are parents do as well? Why isn't that talked about? Where are we supposed to get those special skills?


As we hiked around the mountains yesterday, we talked. We shared. We laughed at the ridiculousness of it all. The failures of the school system, the medical community, the psychological staff. We laughed because crying is something that we do in private.


Having a kid or kids with special needs, especially psychological disorders, is lonely. It is isolating. People don’t understand and tend to cast you and your child aside. They don’t know what to say and can’t relate. They are afraid to say the wrong thing so they say nothing. And the distance between you and everyone else grows.


It is in this situation our friendship has grown and blossomed. It is this place where we understand each other as only one who has walked a similar path can. We see the dysfunction. We have dug deep into our own pasts to see where we have issues and desperately sorted through those issues so as not to further contribute to our children’s issues. We have made deals, bargains, allowed situations that most parents would never do. We have done so because we are desperate. We have a lot of problems and very few solutions. We feel powerless and afraid most of the time.


But yesterday we hiked. We didn’t even talk about the kids that much. We just enjoyed the beauty that surrounded us and took comfort in the length, duration and depth of our friendship. We appreciated the shared bond of having very difficult parenting tasks. We enjoyed the reprieve of being with people who understood without having to explain the unexplainable. For a few hours, we could just be without explaining, justifying, arguing or defending ourselves or our kids.


It always takes the husband awhile to open up when we get together. He usually chimes in as we are wrapping up. Yesterday was no different. He told me of a male friend that he has made that has a sister with mental health issues. He told me how much this connection means to him to have another male who understands that loving and caring about someone who is challenged psychologically is hard in ways that most people cannot imagine. He relayed so well how hard it is to be with people and truly connect with them. Always being mindful of not complaining too much and feeling like you have to put a positive spin on your situation less you be a downer.


I saw the desperation on this face. I saw his pain. His fear. His anguish. I saw it only because I can and have and do feel it too. My whole afternoon with them interrupted by texts and phone calls from my own child who was freaking out about a whole variety of issues that did not need nor really could be addressed at the time. My time with my friends interrupted and derailed by a child who was not even present in the room, let alone the state. He completely oblivious to my needs, my schedule or ability to have a conversation at the time. The phone ringing repeatedly until I answered. Feeling completely helpless to do much of anything as every effort to set a boundary creating a new set of problems that were likely worse than the one currently demanding my attention.


I am drained this morning. Feeling wrung out. Unable to effectuate any real change in my child’s life from a distance and knowing that even when he was here my success was marginal.


What are you supposed to do when you are the parent but have no answers? When you have tried everything and nothing really works? When you have consulted every professional known to man and they are out of answers too? What then? How are you supposed to parent then? If you don’t have the answers, the professionals are stymied, who is supposed to help? Where do you turn?


I don’t know. No one seems too.


I love it when well meaning people offer advice. They tell me to do things that I have tried doing for over a decade. They throw easy solutions that worked for them because they have no clue what parenting a child like ours is really like. They don’t know what fresh hell our home lives are like. They are unaware of how much handling one of our children in the manner they suggest could literally bring down the house, or at least involve the police.


What are we supposed to do when we do not have the special skills required to parent a child with special needs? Where are we supposed to get the skills when the professionals we turn to come up lacking year after year? What do we do when the school system fails to qualify the child for services? Or qualifies the child but then refuses to follow the plan or provide the needed service? Do we hire lawyers? Where are we supposed to get the resources for that? The mental, physical or financial?


Today I feel hopeless. Tired. Scared. Alone. Overwhelmed by my life, especially on the parenting front. Loving my children so much but feeling completely inadequate despite my continued efforts to grow, change and evolve faster than their issues are created.


Today I am just going to admit what I feel so often on the parenting front...lost. I am out here trying to do my best but always getting evidence back that I am failing. Quitting never an option for my children. Even when I want to. Even when I really feel like I have nothing left to give.


I have not done a good job this morning communicating why it is hard or how it is hard because I can’t. I can’t tell you. I can’t show you. I just don’t have the energy. The effort it would take to appropriately relay it to you, energy that I need to get me to the finish line today. All of this underscored with the knowledge that even if I could find the words, they would still ring hollow because you can’t and don’t know until you have lived it.


What to do with all of these feelings at 5:30 am?


What I do every day...feel them, and try not to let them consume me. I pray for my children. My friends and their children. I pray that we all be freed from suffering and the root cause of suffering. I pray that I be given some guidance, that I be used to help others in their plight. That I not allow the sheer weight of my responsibility to crush me or my spirit. That I be granted strength to move forward and to try to have the best attitude I can.


I stay in the moment because that is the only place where I can find peace. I do a quick gratitude list: for friends who understand and have walked the entire parenting path with me, who understand because they struggle similarly, for my own parents’ support and love. For a sense of humor. Then I cry. Because I need the release. I need to allow the pain to come so that I don’t act like an asshole to all the innocent people that I will run into today. I won’t take out my pain on them because it isn’t their fault. They didn’t cause this, they can’t cure it and no one can control it. I find some acceptance for my lot. I think of all the ways it could be worse. I thank the universe that I only have to live this life one minute at a time. I thank you all for letting me share my reality in its honest form.


I commit again to doing the best I can today for me, my children and for all of those people who count on me. Just for today, I can do what would be impossible to do for a week or month or lifetime. Just for today, whatever I am able to do is going to have to be enough.




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