To Be or Not To Be?

Lately, I have been feeling a push towards a new career path.  Through my daughter's IEP process, and by helping a friend through her daughter's complex IEP, it has been suggested to me (multiple times) that I become an Advocate for Children with Special Needs within the school system.  

When I was first approached with the idea of becoming an Advocate, I initially waved off the idea.  As I told one of the people pushing me to go in the direction of Advocacy, "I don't have enough letters behind my name to have that job.".  That was met with the response that you don't necessarily need letters behind your name, you just need to have the knowledge base.  

Over the past two years I have been a stay at home mom.  I have made it my job to become as well educated as I possibly could be on Special Education law and policy.  I have joined committees, I have done numerous hours of research, and I have spoken to as many knowledgeable people as I could.  I am sure that I have an enormous amount of information still to learn.  The laws and policies  change very frequently.  If I do choose to go down this career path, I would have to constantly stay up to date on the ever changing Special Education laws.  (I would more than likely be staying up to date anyway, with two children who have special needs)

The role of an advocate is nothing to take lightly.  It is a huge responsibility to be the one who is responsible for ensuring that a child with special needs gets the Free and Appropriate Education (FAPE) that he/she is entitled to by law.  This sounds like it should be an easy task, but in education there are many gray areas.  Lots of times it is up to the person running the IEP meetings (usually the Vice Principal) to determine placement and accommodations for these children.  With the ever changing law and complexity of each individual child's needs, the person running the meetings is not always up to date with the current policies.  That is where I would come into the picture as an Advocate.  

I have a background as not only and Pediatric ICU and Neonatal ICU nurse, but also as a Legal Nurse Consultant.  I enjoy reading and understanding the law, and I am not intimidated by sitting in an IEP meeting where the school has many professionals in attendance, and I may be the only person there on the behalf of the child and his/her parents.  Maybe my past experience has prepared me for a career as an Advocate.

I have not yet decided whether I am going to go down this path, but after so many not so subtle pushes from outside forces, I am prayerfully considering doing so.

The journey continues...

So here it is.  Our second child has recently been diagnosed with autism.  My husband is angry, and I am somewhat in denial.  My denial is due to some outlying factors.  For one, my son also had a massive amount of fluid on his ears at the time of the diagnosis and has since had tubes placed.  For another,  some other people have said that they didn’t agree with the diagnosis, so that has me totally second guessing everything.  I guess only time will tell.

Having a second child diagnosed is no easier than the first.  Actually, it is sort of worse because now we know what he has in store for him.  Years of therapy, difficulty making friends, rude looks from people who don’t have a clue what we are dealing with.  Once again, it brings up the fact that these kids look normal.  People jump to conclusions about my parenting skills, or lack thereof, because my children have no physical attributes that would cause someone to think, “of course that child has special needs”.

It is so hard because, my husband and I have totally different ways of coping.  When crises occur, I tend to dive into church or bible study.  I have numerous friends that I can call at any time when I need to vent.  My husband gets angry.  He is so upset about the fact that we have another child on the spectrum.  As a man though, he doesn’t talk about it to anyone about his feelings.  As he says, “What good is talking going to do?  It won’t change anything.”  The few things that he does say are so negative, that I can only listen to it so long before I shut him down.  I know that it’s not the thing that I should do, but when someone is talking about your babies, you, as a mother, tend to get defensive.  I rationally know that this is my husband’s way of dealing with things, and he just needs to go through the process, but sometimes the mama bear in me comes out full force.

Since I don’t talk negatively and dwell on what is wrong in my life, sometimes I think that my husband thinks that I am not struggling whatsoever.  The opposite is happening.  I struggle from minute to minute.  I have two kids that need me now more than ever. I have doctor’s appointments and numerous therapies to schedule.  I can’t breakdown, because no one is there to pick up the slack.  Besides, if I am constantly upset, they feel it.  They know when we as parents are unhappy whether they can relay it to us or not.

I learned a long time ago that there are times in your life that you just have to “put on your big girl panties and deal”.  It helps me to think about all of the positives that have occurred with my daughter.  She has done things that I have never thought possible.  If you had told me when she was first diagnosed that she would be in a dance recital and doing the same movements as the other children, I wouldn’t have believed it.  Last month, she did a phenomenal job in her dance recital.  She loves everything about dance.  It is one of the things that she will actually talk about out of the blue.  I love that!  My husband is mourning the loss of what he had planned for my son’s life.  As he calls it, “the boy stuff”.  The baseball, football and soccer that may never come to be.  My view is that, we never thought our daughter would do what she has done, overcome what she has overcome, but she has more than risen to the occasion time after time.  Our son will hopefully do the same.  

I told my husband today, if we constantly focus on the negative instead of the positive, we will never be happy.  When you have children with special needs, you have to focus on the positives.  There is so much stacked against them that we as parents must celebrate all of the small things.  

I have learned so much from being the mother of a child with autism.  I am more patient, less judgmental of others, and I don’t get as riled up about the stuff that doesn’t matter.  When the time comes that I need to advocate for my child, however, that inner fire comes back with a vengeance. My life has been so much improved by having a child with special needs.  God gave these children to me for a reason.  It is my responsibility to rise to the challenge.

Blessings

When you go through difficult times, sometimes God speaks to you quietly.  The past few days have been rather rough for our family.  I have been singing this song over and over again in my head.  Though we often do not understand His plan, I continue to be comforted by the fact that His plan is better than mine.  



Laura Story -  Blessings

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You're near
What if my greatest disappointments
Or the achings of this life
Is the revealing of a greater thirst this world can't satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise