Do you ever have one of those days where you just start thinking about
"What if's?" and that just gets you started on thinking "I shoulda's"
That's me the last few days, and it was Lonnie before me...we run in cycles.
I am not really down in the dumps, but it seems like its fast approaching. I am wondering if I am doing enough? Should I be doing more? Daniel is making progress, slowly, but there is still progress. I read other blogs of children with special needs and I begin to question what I am doing. There are parents that are taking their children over to China for stem cell treatments, there are parents that have their children in ABR and doing hours of compression-type therapy are home each day, there are parents who are doing hyperbaric treatments. Then there is ABM therapy which seems to work really well for some kiddos.
There are parents that have their children involved in outside activities, hockey, skiing and things like that. I don't let Daniel experience those things - whether it be from fear of him getting hurt, not being able to figure out how to do it with him, or just laziness on my part. I don't know.
Maybe I am feeling like doo-doo because I don't have Daniel in any outside therapies currently because we are in Grand Rapids and he is so tired after school every day at CLC. He is getting a ton of therapy there, but is it enough? I always second guess myself. I scare myself. That maybe Daniel would be walking right now if I had done things differently. If I had worked more with him at home, taking him to more sessions of some therapy. That maybe because of my lack of drive on certain things that I have harmed him by not putting him in some other sort of therapy?
Then there is the school academics aspect of the whole thing. Yes he is getting academics at CLC. But is it enough? Is he where he should be? I love CLC, and I can't imagine putting him in the public school system - scares the chit out of me. Really it does.
But again - am I doing enough with him in this area?
Don't get me wrong, I know I am a good parent to him, I love him with all my heart. But I always feel like I should be doing more that I am not. That perhaps I made the wrong decision to put him in this environment for 9 months and didn't keep him in his therapies he was in that he might be further physically?
I have always thought Daniel will walk (with a walker unaided). I always say I am OK even if he doesn't, and I am. But then why in the back of my head do I continue to think "he'll walk someday". Does that make me a bad mom? an unaccepting mom?
Maybe its just emotions running high right now-- being away from everything, seeing other children doing things that we just don't have the opportunity to do either because of where we are or funds. Just one of those weeks where I feel like I am not doing right by my child.
For the love of Pete I hope I can shake this mood I'm in. Its not very productive.
7 comments:
I hear ya! I'm certain we all feel the same from time to time. I bet parents of 'typical' kids have similar feelings. I weigh all options make an informed decision and TRY not to look back.
At the end of the day its your love and support that is priceless.
Daniel's school looks awesome! Rock on!
I know exactly what you mean. I feel that way often, and it is very hard to get out of that funk. I read your blog and wonder if I should take my son out of his preschool, move far away and do what you are doing with Daniel at CLC. What an amazing thing you are doing for Daniel! I second guess myself and my decisions all the time, because with situations like ours the stakes are so high. I try to remind myself that no one can do everything - everyone has to pick and choose what to concentrate on. If we try to do to much we will drive ourselves over the edge, and that helps no one. Like Janet said, at the end of the day (or week, year, decade) it is your support of Daniel that makes the most difference. Just know other people are looking at you and are in awe of how much you are doing for your son!
Mom guilt sucks! I am in the same boat as you right now. Always wondering if I am doing enough. Could Emily be doing more if I did this or that? I think we will always wonder about that to one degree or another. I think Daniel is doing fantastic! And he has a great set of parents that are looking out for his best interest.
I think this comes with the new year. We take stock of where we are at and look at the "what ifs". I was thinking the same about Emma - should we do ABR, ABM, more HBOT, conductive education, laser treatments, etc. I still wonder sometimes, but then I look at Emma and realize she is a thriving little girl. She might not be the least bit independent, but she is filled with happiness, joy, laughter. It just radiates from her and I'd hate to take her away from typical life for more therapy.
I had a long conversation with her teacher for the deaf when she was little. The woman is amazing and I really love her. She is deaf, but can speak and lip read so well you wouldn't know she is deaf on first look unless you talked to her with your back turned. Anyway, I think of her as a great success story - she did therapy when young and now she can slip between the hearing and Deaf world seamlessly. But, during a really great conversation she told me it wasn't worth it to her. She missed too much of her life in therapy. Talking isn't that important to her for her to have missed out on so much free time in life when she was younger. Of course Emma needs therapy. She needs it to learn basic skills in life and also to hear with her cochlear implant and hopefully to be verbal one day. But, when I think of therapy I remember this conversation and think to myself that I don't ever want Emma to tell me one day that yes, she can walk but it wasn't worth it. She missed out on too much of her childhood in therapy just to walk. She would be fine in a chair if she could have more of her life back to do things she wanted instead of therapy.
Not sure if this helps, but it might give you a different perspective. I know the conversation really hit home for me!
::nodding along...::
Deep breath. You are doing awesome. Kids (typical and atypical) get overstimulated. Each person can only learn so much at one time. I think it's completely ok to be focusing on intense therapy right now (like you are) and worry about the education aspect later.
I'm a little late commenting so I really hope you have given yourself a break by now.
Like mentioned above, I think we all have these days where we question. Even though I wish I could do more I was told once by the ladies at Cole's school and therapists that they do all that they do ( like at CLC) so that our children can get what they need during the day and can go home and enjoy 'normal' (as defined in each household) family time. Not only do they NEED that down time, play time, snuggle time, bonding time...but so does everyone in the family. Our lives are so far from others 'normal' that we need to feel a little normal sometimes.
Also, (even though I do sometimes) we can't beat ourselves up about things beyond our control (ie expensive treatments that finances don't allow us to try, stem cell if you didn't save any, etc).
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