Friday, January 31, 2014

Random thoughts from a special needs mom...

Every quarter or so I get progress reports from Joe and Christine's teachers.  I know its just part of the process but sometimes I want to just put them in the ever growing folder of papers that I don't want to look at.  They are graded on a scale of 1-4...  we get a lot of 2's (minimal progress) , intermingled with a couple of 3's (progressing).  Frankly, I don't think their goals have even changed all that much since they started First Steps.  Oh sure, we reword them from time to time but when it comes down to it they are the same goals.  Independence being a big grander goal that may just be out of reach.

After Christine I switched Christine to four days at developmental prek (she is in a morning half/day class) instead of two.  I had been resistant partly because it makes it difficult for Nate and I to get out and do things both independently and with our homeschool group when we have to be back to get Christine off the bus.  But I think it will be beneficial for her to get challenged at school the extra days and it will be good for Nate and I to have more one-on-one time together.

To be honest, I have really been struggling with our diagnosis of "autosomal recessive disorder". When I saw the genetic neurologist at Riley regarding both Joe and Christine he said that because we have two children with similar developmental difficulties its most likely caused by ARD.  Isaac and I must be carriers of a genetic abnormality that would only be problematic when paired with another person who carries that same abnormality.  That makes our chances of having a child with special needs 1 in 4.  One in four chance.  And we already have two out of three.  Its overwhelming to think about those odds. 

A friend of mine who also has a son with special needs commented that if we lived with a handicapped child 100 years ago it would have been totally different.  We wouldn't have near as much of the pressure to "fix" them.  It would have been accepted that they were going to be different and that would be that.  They didn't have doctors and therapists in all different specialties to be pushed onto you.  Sometimes it feels like everyone I meet has this book or therapy suggestion or that doctor to refer... not to mention the internet.  Its information overload sometimes.  I'm not saying it would have been better... just different. 

I don't ever want to give the impression that my children are not blessings because they are.  But my plate is full. The thought of having another child special needs or not is enough to make me tear up.  How could I even have enough energy to nurse and care for another baby?  I feel like I can barely keep going as it is.  I often have to remind myself that God is carrying us, helping us and teaching us through this experience. 

I recently told a friend about a blog post I read from a dad of a special needs son. He talks about how he dreams about when he will someday see his non-verbal, wheelchair-bound son in heaven... walking, running, talking.  Its a beautiful picture painted by this dad that I have often dreamed myself of my own special needs children.  It brings me to tears just sharing about it.

And it makes me wonder something.  I have all these questions I want to ask God.  Why us?  Why my children?  What really caused them to have developmental delays?  Was there a magic cure that we just never found/tried?  Did I learn whatever it is You were trying to teach me?  The list goes on and on.  But what I wonder is if all those questions will matter when we get to heaven.  Will we get time to sit down with God and have those questions answered?  Or will we be so perfectly happy to be with Him that none of that will matter at all anymore? 

1 comment:

Jessi said...

God bless you! You're an amazing mom and I can only imagine your exhaustion. Your children are beautiful just the way they are. I'm a firm believer that it takes a special person to be a parent of a special needs child. You are truly a wonderful mom and God knew what he was doing when he blessed you. You've got this and I believe that all questions are answered in time. :)

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