As my daughter transitions to an adulthood, I worry about so many things. A lot of it comes because I do not have much in the way of close by family or supports near by. Many parents without families and supports continue to support their adults 18 and up even after they have long left the house. This care is unpaid, yes, they are our children, but at some point, it becomes a struggle to always find aides, supports etc. as we try to live our own lives or when supports leaving us without much notice. Then it turns back to the parent to take time from work or burn out working while looking after two households. The following is probably my top worries:
Blame and fear
I blame myself for everything, when she was diagnoses, I even blamed myself often ponder the question is my daughter happy, was I too hard on her and I doing everything to make her as safe and independent as possible? This was a tough one for me, as I lived on my own a very young age, no parental direction. I did not want things going the way of my family relationships. I still have moments of doubt and fear but have no fear we are human, and humans make mistakes and push through to grow. Remember your doing amazing.
I like many other parents have moments of regret and resentment, there were times I wish my daughter situation was different, the days we had screaming matches that ended in hate and what the heck was I thinking when I thought I can do this, even those moments of hate and the instant guilt that follows can be all-consuming. This just scratch the surface when it comes to our worries. One thing I know, though, is that we love our children very much and no matter.
Who will Care for our Child When we’re Gone?
I have spent many nights crying and worrying about this. I force my inner voice to tell myself I got this; things will be ok. It is a huge job looking at this question, who would be willing to take on this massive task. It is not an easy one and let’s face it many are not equipped.
Finances are a never-ending concern. The amount they receive is not nearly enough for our amazing adults to live on. Yet setting up a trust or an account is worrisome, too, as it can disqualify our child from receiving benefits if not done properly. So how do we ensure they are looked after when we are gone?
Not only for our adults but for ourselves, this can be a hard topic. The journey we travel can strain not only the best relationship but can be a struggle for our special needs adults. My daughter wears her heart on her sleeve and really struggles with the concept of relationships. I often worry about her broken hearts, if she will find that person, if they have true intensions whether they are friends or in a relationship. I have learnt all I can do if be there for her and steer her from the users and bullies. When my partner and I are gone, we worry about who will be there to help guide our child and offer advice on these sorts of relationships.
I tend to think other parents of adults with special needs worry about this stuff to. Talk about your fears and you will find you are not alone. There are people out there to help. If you find you need a place to start remember we are two moms ready and willing to be your first supports in you team. Let's see how we can help out.
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Parent's Survival Team