I tried to look up some advice on this topic, I had no luck. It is not easy to type out that you are sometimes embarrassed of your child.
Last week, we went to a community dinner and as the kids sat down to hear a holiday story from the Pastor, I debated on taking Tobey over there. He was being really pretty good, and so against Eddie's "no" nod, I took him to story time. I picked a chair in the back, and I immediately ran my hand up and down Tobey's back which helps him out. I tried to make it look like he was interested in the story, but his eyes just glazed over. Than he started making these weird sounds. I immediately started tapping his hand which works about 75% of the time. This time however we were in the other 25%. I accepted defeat, and bent down to whisper to the closest kid to me which was Emily to let her know that I was taking Tobey back to the table and I saw it. She was embarrassed of her brother and my heart broke. Here she was being good, patiently listening to the story, answering all the questions with your standard "Jesus is the reason for Christmas.". And all I could think of is how upset I was that she was embarrassed. Note that I said that I was upset, not Tobey...he could care less.
I know that being a sibling to a special needs kid has got to be frustrating, but I have never been in those shoes. But when we say prayer at dinner every night the other 6 are required to sit, eyes closed and head down while Tobey is generally running around the house with no pants on yelling "vacuum!". We have never gone to a movie theatre as a family. Sit down restaurants are hard....to be honest everything is hard. I only made it through about 10 minutes of the sermon this week before Tobey had had enough, I then sat in a room with him working on colors for the rest of the service. If we are invited to something, the first thing we think is "Can Tobey handle it?" and that determines if we will even attempt it. When we get to the day of the event, if Tobey is having a rough day we may have to call it off all together.
I went to a marriage counselor once who who told me that if the kids didn't resent Ed, Tobey and I yet that they will "mark his words". But, he never told me what to do about it....maybe because I got so frustrated I decided to start phasing him out :)
I knew I needed to talk with Eddie about what to do about Emily, and he said something profound (shock with Eddie, I know) he said that there are times that he is embarrassed of Tobey. At first I was a little pissed. How could you say that about my precious boy? And then I realized that deep down I get embarrassed too. Walking down the aisle of Church is embarrassing, having people stare is embarrassing, Tobey Jude discovering how much he LOVES his junk, no matter where we are, is well....disturbing and embarrassing.
So, I talked to Emily about the situation. And she feels like she has been cheated. Cheated because we don't do things like other families and cheated because Tobey is not the Big Brother that she wants. She wishes that she could talk with him, she wishes that we could go places besides therapy and appointments and I get it. So, I am not quite sure how to fix this one, they don't have Grandparents that are going to jump in and do that stuff with them, or watch Tobey so we can. And at the end of the day there we are so exhausted from the Tobey Jude that all we can do is put a band-aid on the problem. So I pulled out another band-aid and I took her and Melody out to a cupcake shop and Eddie and I had some one on one time with them. the band-aid worked but I don't know for how long....there is no fixing it, there is no cure.
I mean, long term, how do I prevent my other awesome kids from resenting the one who takes the majority of the their parents' time? I know some people will and have said "oh they understand" or "Don't worry, they will." But will they? really? I'm not looking for some general "with God's help" answer. I know that I have God in our corner. And, in many ways. He has already provided. But there are times when I feel that I am phoning it in with my kids because i am either dealing with a special needs situation at home, or am quite frankly too tired.
My husband made a comment on a post about poverty that said something to the effect of "poverty forces you to physically carry a heavy burden...all the time". So does special needs. There is NEVER a time i do not worry about my son. There is never a time when I am not trying to figure out how I can best adapt the situation for him. And, sometimes, I have to do it at the cost of the other six.
Now, i am not looking for a pity party. But I am curious to all of the other special needs/normy parents...do you have some REAL advice. I know we will get through because, in all honesty, we have to. But, it never hurts to have a few tricks up your sleeve.
