Adventures Of An Awesome (Sometimes) Mother: How long?

Thursday, August 10, 2006

How long?

When Evan had his stroke the neurologist told me that he should be a normal little boy by one year post stroke. He would of course need physical therapy but with a little work you would not be able to tell him from any other child his age. I totally bought into that idea because I wanted Evan to as normal as he could be.

Evan is now roughly a year and a half post stroke and is still very visibly affected by it. The untrained eye might not see anything but it is not too hard for anyone that pays the slightest bit of attention to notice that he does not use his left arm. Evan is also much more prone to tripping and falling because of his left sided weakness. He has a peculiar gate that is especially noticeable when he is trying to hurry.

I have been struggling for some time with all of this. It is so hard to know when I should help him or when I should let him attempt to do something on his own. I worry that he will fail but sometimes he will surprise me by doing things in unexpected ways, succeeding where I had thought he would not.

When should I stop hoping that he will snap out of it and start using his hand? How long should I keep trying to encouraging him to keep trying? When should the focus of physical therapy change from regaining use to adaptive behaviors?

The prevailing wisdom is that if something has not improved by one year post stroke then it is very likely that it will not get any better. I can't really disagree with this, Evan's biggest gains came very quickly. His stubborn little hand is still there hanging off of his arm, seemingly unnoticed. Occasionally he will take the forgotten hand and use his good hand to make it touch something that particularly excites him. Today I saw him actually steady his sippy cup with his weak arm, briefly, but he still did it.

Things like that help give me hope that maybe he could gain more use of his hand. Sometimes, though, I wonder if I should stop hoping and start accepting. Once I start accepting it means that I am accepting that I am the mother of a child with a disability. Am I ready for that label for my son? I am just not sure.

11 comments:

Zephra said...: I am not sure as I have never been in this situation but I say a little longer would not hurt too much. Doc said a year and it is only 1 1/2 year. Give it a little longer. Bless you.; 10 August, 2006 08:05
Anonymous said...: I am not sure accepting means labeling. Have you talked to his physical therapist? I can imagine how difficult this must be for you. Hugs.; 10 August, 2006 08:57
Awesome Mom said...: For the record this is more of a rhetorical question than an advice question. I have no intentions of stopping physical therapy as there are still improvments even if they are small. I am just trying to mentally plan ahead and think about how long this should go on and when things will not get any better.; 10 August, 2006 10:45
bella said...: Its an awkward little place to be, isn't it?

My 22mo daughter is developmentally behind, and I spend a lot of time wondering when I need to help her out, and when its better to let her 'do it herself'. What I finally did was both: I taught her the sign for 'help', then when I think she might need help, I ask. If she signs 'help', I do; if she doesn't, I back off.

As far as PT/OT/Speech, I mentioned my concerns to all of her therapists, and keep on them to make sure they are offering help on both sides: improving what she has, helping to make accomodations for what she lacks (now). If in the long run the accomodations aren't necessary, then great. And if they are? Well, we have that covered as well.

I know how you feel about the 'label' thing, too. I wake up nights, near tears, thinking that she's 'disabled' or behind or anything. My husband likes to remind me that its us with the problems, though. She's perfectly happy where she is. Its OUR problem thinking about all the things she's going to miss out on. She's not missing *anything*.

And what a wonderful mom you must be, for God to have entrusted this little spirit to you! (Don't roll your eyes... my husbands family tells us this all the time, and I know I roll my eyes too... but somewhere it must be true, yes?)

(((HUGS))) to you, and to your beautiful little boy!

(ending the novel, though I have tons more I could talk about -- my cousin's daughter had a stroke at 9mos that took one entire side of her brain... anyhow....)

--bella; 10 August, 2006 14:20
Unknown said...: I would try not to put a label on it, especially this early in the game. Your frustrations are founded...all you want is for your little boy to be whole. For now, just do what you're doing: have faith that it will happen and enjoy him in the now!; 10 August, 2006 16:33
Awesome Mom said...: Accepting does mean labeling. If Evan does not ever regain much functional use of his hand he will have a disability. That means he will be considered disabled by society at large. If I send him to public schools I will have to meet with administrators and have special educational plans in place for him. If he never regains functional use of his left hand there is a whole host of things that he will not really be capable of doing well or at all. When I look at him I do not see a disabled little boy but that is what others will see when he starts interacting with society more.; 10 August, 2006 17:41
Nancy Evans said...: I know I'm just your mother, but whatever he will or will not be able to do, I just feel happy he is ours.; 10 August, 2006 22:28
Anonymous said...: Evan will adapt! He will find ways of getting things done that you nor any other trained professionals could have ever thought of. Accepting all of Evan is important, but he's not his disability, he's Evan. Accept all of him just as he accepts all of you. No one is perfect. As far as "prevailing wisdom", screw that! I've seen people walking and talking that "prevailing wisdom" deemed they would never do again!!
Lastly, I've enjoyed reading your posts for about 6 months! Thanks!; 10 August, 2006 23:08
Will said...: Hey Awesome Mom...I've been trying to send you a super long email but your email address isn't working for me. Could you email me at willkristi@yahoo.com? Thank you so much! I can't wait to hear from you.; 11 August, 2006 01:23
Mel said...: My heart goes out to you. Watching your child struggle is hard. I know because my child has spastic quadriplegia (a form of cerebral palsy). Give the hand more time. I think he will start using it more. My boy wasn't able to use either hand much at first but he's gotten pretty good with the left and has started using the right hand a little more. The therapy is huge. Sometimes it seems like he isn't making any progress but if I look back and compare with like a year ago... I can see the progress.; 11 August, 2006 08:30
Anonymous said...: Hi, I got here from the Pediatric Grand Rounds. You don't say exactly how old he is, but the "sippy-cup" makes me think toddler range.

The thing is, that "prevailing wisdom" might apply to adults, but I seriously doubt it applies to a toddler! Anywhere in that age range, his brain is still pretty plastic, and he's got lots of time to continue "compensating" -- both rewiring around the damage, and learning to work around the effects.

Be warned that the compensation will probably slow down his overall development a bit, so he may be late to a few "milestones". Just be patient.

You're right to keep up with the physical therapy; Don't be afraid to encourage him to use his "off hand", or to practice walking "right, left, right, left", when you see an opportunity; try to work with his enthusiasms, and build games around the "practice" (or vice versa). (E.g., the bathtub is a good place to practice picking up, say, a small bowl with both hands. ;-) )

I wish you good luck, but remember that he's already lucky to have such a dedicated and caring Mom!; 05 November, 2006 19:55