I am not sure what to make of them.
I definitely am not sure how to respond to them.
With all the books on parenting these days, I don't think there is a single one that tells you how to parent the seven-year-old son with autism who does not talk, but, yet, has a lot going on in that sneaky little head of his, while simultaneously parenting the aforementioned child's four-year-old sister who just started kindergarten, is growing up in a single-parent household, and has more emotions than she knows how to handle, despite having a vocabulary that rivals that of many adults.
Yep, I don't think I am going to find any help on the shelves of Barnes & Noble.
Not any time soon, anyway.
Hey, maybe I just found my job opportunity.
In the meantime ....
How do I respond to the four-year-old who throws herself on the floor at the mall because she does "not have the energy to try on shoes."
How do I parent the four-year-old who tells me, "WELL, I just need YOU to cooperate with ME," after I tell her that I would really appreciate her cooperation during the shoe-shopping-venture.
How do I respond to her when she tells me that she is "done with" me, simply because I tell her she cannot get a new toy at Wal-Mart?
Keep in mind that I don't have a lot of time to ponder these questions while on the scene, because my non-verbal seven-year-old is there, too, and I can't take my eyes off of him for a second.
Sometimes higher-level-parenting has to take a backseat to reality.
I have a child who requires so much. He is walking through life with the physical capabilities of a seven-year-old, but the linguistic capabilities of an infant.
He can twist open the lid to a child-resistant-jar in a second.
He can turn on all the faucets in a bathroom, stop up the sinks, and leave the scene.
He can rise in the morning without anyone hearing, open a box of Popsicles, and eat them all, while leaving a few scattered about so that I am left scrubbing neon purple spots with carpet cleaner in the hope that the stains might disappear.
And, speaking of disappearing ...
I live in fear of it.
He cannot disappear.
My heart couldn't take it.
And I don't want to deal with police involvement and the resulting investigation by child protective services.
And so....
My daughter does not receive the type of responses she deserves.
She is not on the receiving end of a well-thought-out-parenting-plan.
She is, instead, on the receiving end of the do-the-best-I-can-even-though-I-am-stressed-beyond-words-and-feel-so-guilty-about-it-mess-otherwise-known-as-my-current-parenting-plan.
She constantly hears the phrase "in a minute" and she constantly waits.
She doesn't get to go to gymnastics class -- even though I know she would love it -- because she already takes tap and ballet, and I only have the energy to take her brother to the local rec center ONE night a week.
Oh, my, doesn't that sound awful???
Yes, I admit it. To take my daughter to dance class doesn't merely involve getting her dressed and ready and delivered on time. It also means taking her brother along. And keeping him busy and entertained and happy while we wait ...
In public.
And, even though I have been dealing with autism for several years now .... even though my skin is a lot tougher than it once was ... even though I am able to look people in the eye and tell them that my son "has autism" when the occasion requires ....
There is only so much I can do before I feel like crawling home, closing the blinds, and locking the doors.
So, my daughter has some behavioral problems.
How could she not?
I do, too.
Give us a break, world.
All of us. My boy, my girl, and, me, too.
We are doing the best we can.
Check out my blog at fruitypebblesfordinner.blogspot.com
This reminded me so much of my daughter. I really can relate to your post.
ReplyDeleteIs there any chance at all that you have a family member or a good friend who could watch your son for an hour or two? Any chance that of time alone together (even just once a month)? I cannot imagine how hard it must be to do everything you are doing as a single parent, but I can say that my middle child who has some of your daughters same behaviors has been helped a lot by some alone time with a parent. Good luck!
ReplyDeleteI am heartened by the way your daughter responds to you. Clearly you have spoken to her with great patience and given her some sort of explanation for the delays; essentially she sounds like the most reasonable of parents herself (I take it that she is quoting you) and there is nothing here to admonish you for. Hardship builds character, and she sounds like she has a strong sense of herself. You're doing your best. She will grow up and eventually gain some understanding of your sacrifices, so don't beat yourself up. Just take it one day at a time. You also might, for your own peace of mind, bring your child to the local police station and tell them your fears about the possibility of him trying to get away from you. With an explanation of his autism and a picture on file, and perhaps a contact within the department, you would be able to get any search started much more quickly, if your fears were realized. (I don't think that they would consider it an interest of child protection services, but maybe your local autism chapter could help you to find some regular respite. It sounds like you are blaming yourself for things you have no control over (your genes) and this drags you down when you need all your energy just to keep up. If you do get some regular respite, I would encourage you to take up an exercise that would also build your endurance, so that your fitness is enhanced to its optimum level. So instead of isolating yourself out of shame, surround yourself with an invisible team, other people with kids on the spectrum who can back you up when you are expected to be two places at once. Is there a parent in your daughter's class who lives near you and would be able to drive her home if you drop her off? Don't assume that, just because some of the people you meet have never been exposed to autism, that they would not help if they knew how.
ReplyDeleteThat was just awesome. I know you didn't mean for me to enjoy it----and I didn't, not in that way. But man! You so get it. I can't give you a ton of advice, because obviously you are doing better with your situation than I would in it. But about the shoes. I've resorted to buying the shoes when I am alone, bringing them home... I have to have them out for a week or so, just so he can see what they look like, get used to seeing them. Then after a week, he magically can't find the old shoes, so has to wear the new ones. I've never gotten them in various sizes, but looking back, it may have helped to just have the same shoes, like his whole childhood. Before I started doing this, shoe shopping with him and his sister was THE WORST.
ReplyDeleteThanks for writing. I agree with having some type of care for your son, and some type of care for your daughter, and (the impossible) care for yourself. Isolation is the hardest part of this life. Just breath. Another person would really help, even if it was an older teenage girl, or college student who could have a regular shift or 2 per week. Or trading with another mom.
OMG This is MY life. Glad I found this blog!
ReplyDeleteAm I supposed to have a parenting plan?? Many days, it is enough just to get the kids get through the day alive and fed. We're right there with you, at least in spirit. Your daughter may want more than you can give sometimes but she is going to grow up knowing patience, love and respect for others, especially those with special needs.
ReplyDeleteAmazing post... You are not alone. My sxon is verbal but still cant express himself when he really needs to and he is very aggressive. I also have other children whom feel left out and set aside. I am so sorry that you are going through this but I hope that you know that there are others and you can always drop me an email.
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