About Me


I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Sunday, August 29, 2010

sometimes it is all just hard

One of the things I think that makes life with my boys hard is that I will not get the opportunity to raise a neurotypical child through all of childhoods phases until Jacob goes through each phase. I am sure that some of what each of my older two kids do is "typical" and often I feel like it is "typical with a side of atypical". What I am constantly trying to do is balance life- I don't want to be too hard on Matthew or David if they truly dont have control of their actions, and then again, I don't want to be too soft on them if I should raise the bar.....

Today was a day that I was full of thinking and trying to figure things out. In a stroke of genius, I decided that I had to do back to school shopping this year at the Outlets. Sure there are stores around here, and sure I could have shopped at them, but I really wanted to hit the outlets, and I really wanted to go with my mom, and of course that meant the 3 boys were coming as well.

As we started out on our drive, I immediately got us lost. I knew that there was a shortcut to the highway and I was bound and determined to find it. However, after senselessly driving around for 20 minutes and basically going in circles, with me having no idea where we were, Matthew quickly announces we are "close to 5 rivers". i would have bet against him. I would have sworn he was wrong, but my mom and I both knew better, and not 2 minutes later what happened- we drove by 5 Rivers....now sadly this is 5 minutes from my house, so we effectively drove 20 minutes to go a total of 5 minutes away....but more importantly, how did he know that is where we were? How did he recognize the roads? If he knows directions this well, why are there so many things he can't do? can he do more than I give him credit for? Am I underselling him? Have I decided that there is more "wrong" with him than there really is? How do I tell?

Then there is David. He did great for the first 40 minutes of the ride, and then he started just being out of control- squirting Jacob's juice box at him, throwing it on the ground, poking at Jacob...and I know...many would say he should stop himself...if only I held him to a higher standard..........
but I believe this is not the case, I can't explain it to you....I can't make it make sense, and I truly hope I am not wrong. God I hope I am not wrong.....

See with David, when life makes sense, he is the quickest to comply. However, if it doesn't make sense, you could do anything you want, and he will not comply....it is as if he can't. So, rather than yell about the juice box, I moved him to the middle seat with me. Then he calmed down, and then we found out that he wanted an orange juice box not apple juice. When my dad packs juices, he usually packs orange juice boxes and so that is what David had expected today. After a few more tough minutes, and convincing him that we would eventually stop for a drink, he and I had a great ride together. Then, we stopped, got him and the other boys a snack and a drink and the remainder of the ride was pretty good.

The same thing happened at the shoe store....actually I guess it happened before the shoe store. See, one of the things we had said we were shopping for was shoes for school. As we left my house, my mom told David to wear sandals but he insisted on wearing flip flops and I figured whatever he wanted on his feet was ok by me. As soon as we got to the outlets, David spotted shoe store after shoe store and quickly insisted that we go get shoes. But rather than talking or getting our attention, he simply took off his sandals and repeatedly threw them insisting he was done with them- he wore the flip flops, but bubbe said they werent good for shopping, so now in his head it was time for new shoes..... Now again, I know....many will think I should just tell him, "now you get no shoes!" and this is where it is hard, because with Matthew that is exactly what I would have done. And with Matthew it would work. With David it would just get more and more and more impossible. You have to think like david to have success with David, or at least that is when I find success.

So, after a few other stops, because I will not immediately just give any of my kids exactly what they want when they are behaving poorly, we finally entered Stride Rite. David quickly found a green shoe box, fell in love and wanted whatever shoe was inside. As I tried to teach him to look for a size 1 he got more and more and more frustrated- this is where his brain seems to break down. The more I tried to show him that I would get him the shoes but we had to get the right size, the more he became unable to hear me and to recognize that I was trying to help him. He became more and more frustrated and began to try to throw his flip flops and knock the boxes off the wall, but as I looked at him, I knew he had no idea what I was doing...to him it was as if I said "come, see ALL the worlds shoes....and YOU cannot have ANY!!!!

It was hot in the shoe store, it was crowded in the shoe store, and it was super hard to be david's mom in the shoe store- trying to be patient, yet having to duck his sandals. Trying to get him to understand I was on his side, I was here to help yet seeing in his eyes that he didnt understand. In my effort to get through to him, I got loud, and he got sad. Then I got sad, and continued to be frustrated. Finally I was able to get him outside where it was just the two of us, and I was able to help him to see that the shoes he wanted would be he is. We just had to find the right size and pay for them and he could wear them.

I can't tell you it got much easier, until finally he got the shoes he wanted on his feet....and man, did he walk with pride and happiness once they were on his feet.....and I spent a good portion of the day wondering....did I do it right? Did I teach him? Are we getting any closer to him understanding patience, waiting, being a good listener? What happens in his brain when he can't hear me? Is he that confused, or is he playing me for a fool? I so wish I could open his head and see what was going on. I so wish I knew in 10 years what he would be like.....for today this is the best I have.....I hope it is one day good enough......

3 comments:

  1. Wow! Thanks for this glimpse into your life and thank you for sharing. If you get a chance, check out the book "There's Something About Daniel" by Robyn Stecher. It's a book of memoirs by the mother of a special needs child. Some of the stories are heartwarming, some have a touch of humor, others will bring a tear to your eye, but I think it's something that every mother in your shoes can relate and enjoy. Many blessings to you and your boys!

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  2. I am always looking for books like this....thanks Molly....I will check it out.

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  3. Amie,
    I wish I had something to say that could bring some relief to you. I don't, but I wanted to comment anyway. I feel like I walk your shoes so many days. I have 2 not 3 but I swear Simone makes up for it. I can see myself in that shoe store. I can see Simone throwing all the boxes on the floor and Victor running around oblivious and spitting at everything. Wishing I just stayed home. I know how you feel. I hope that you do get to a point where you are content with the way things are. or better yet the boys grow into their feelings and can express them better.

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