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Wednesday, July 13, 2011

Why it is OK to be THAT mom.

I have a lot of "friends" now on Facebook who have children with Wolf Hirschhorn Syndrome.  Most of us have never met in real life, but we have formed a unique community of moms and dads who support each other.  We ask each other questions and offer answers - which is such an amazing thing.  I mean.... in less than 10 minutes, I can get a list of 30 seizure medicines, all I need to do is ask, "what meds are your children on to control seizures?"  I get the advice of every doctor that every parent of every kid has ever seen.  Of course, this advice is secondhand - and doesn't replace the advice of my own doctor, but it is a great place to start.

There is one area of questioning that I happen to be an "expert" in... it is also the area I should excuse myself from.  Education.

Let's imagine this.  You have a child, who uses a feeding pump.  Suppose that child can walk for short distances but uses a wheel chair regularly.  Maybe this child has a few words, but doesn't yet speak in complete sentences.  You go into school... the first time... for an IEP meeting.  What in the world happens?  What are your expectations?  What "education" should your school provide for your child?  Where should your child be placed?  What will you say?

No matter if you have a child with a severe disability or not, these questions run through your mind.  How intimidating it must be to be the lone parent in a room full of teachers and administrators discussing your child.

As a person on the other side of that table... there are some other things to consider.  If you have enough money for ONE speech therapist, how many hours a week will you devote to one student?  And... what if you have two students that both need services... one knows 4 words and the other needs pronunciation assistance?  In a perfect world, each student would get speech therapy every day.  But, if there are 100 students and 1 therapist... this just isn't possible. *sigh*  See the problems?  There is only so much money in the bucket.  Only so many resources that can be divided out - where do you best place them?  I feel I can talk about this because I know I will some day attend an IEP meeting on the parent side of the table. 

So why this post? A "friend" asked about her son's bus time.  He was on the bus for 1 1/2 hours before and after school.  She thought that was too long on the bus.  To be honest... that is a long time.  I'm trying to picture my son on a bus for 3 hours a day... not our "best educational situation."  We began to discuss what to do about this situation.  She was afraid to be THAT mom. I'm going to tell you all... It is OK to be THAT mom.  I WILL be THAT mom.  Allow me to explain.


Alexander is the hardest working person I know.  Just to sit up for 5 minutes is more work than I work all day.  Everyone gave up on him.  They said he would never blah blah blah.  I won't give up on him. Ever.  I know people who started walking in their late childhood or even teen years.  I will not give up hope that walking will some day happen for my fighter... but it won't happen without therapy. The same goes for eating and talking.  You never know when someone with a "delay" will master a skill.  That is why it is called delay - because the skill is achievable.  Alexander is a fighter.  He demonstrates more courage, effort, and "fight" than I ever could.  But I can fight for him.  In those areas where I can make his life easier, I will.  I will make sure he has therapies - even if I have to fight for it.  I will make sure he is included with other students - even if I have to fight for it.

I will trust my "mommy gut" and fight for all the things I think he needs.  I will be THAT mom.  And it is OK.  It is OK - because who else is going to fight for him?  Who else will stand up for him?

It is OK to be THAT mom.

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5 Comments:

At July 13, 2011 at 8:02 PM , Anonymous Lisa Dueringer said...

I love it.. thank u... you are awesome!!

 
At July 13, 2011 at 8:31 PM , Blogger Emily said...

I always tell parents when the apologize to me for being "that mom" that that is exactly who I want them to be. Moms and Dads are the best advocates and know their children best. If you're not "that mom" no one else is going to be. Every child deserves someone who will fight for what they need. Your kids are lucky.

 
At July 13, 2011 at 11:30 PM , Anonymous Jennifer said...

Love this! My nephew has a downs syndrome diagnosis, and my sister-in-law has always been a rather laid back, go-with-the-flow personality. However, no one will ever demand the things a child needs like a mom. I have loved watching her become "that mom." I thank God every day that my nephew and my brother and sister-in-law found each other. They truly were a match made in heaven, as Alexander seems to be with your family. Thanks for all that you share with us.

 
At July 14, 2011 at 9:32 PM , Blogger Awn said...

My mom was "THAT" mom. And I love her for it. It has made me a braver more compassionate audiologist and in turn I can empower my patients parents to fight because they know others have. Be that mom!!!!!

 
At July 16, 2011 at 11:25 AM , Blogger Hilary said...

Great post!

 

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