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

The Best Laid Plans

So, since Mother's Day around the corner, I have been pondering all of the things that I've learned   since I became a mother.  I'm going to get a little deep here, so just bear with me.

The main thing that I have learned since becoming a mother is that God's plan is so much bigger and better than my own plan.

When my daughter was 26 months old, she was diagnosed with autism.  Initially, I was devastated.  My whole plan for what her life would be was gone.  It had vanished in the blink of an eye.  I didn't know where to turn or how to cope with this huge obstacle we as a family were facing.  

My daughter is now five.  She is a joy and we have been so blessed by having her in our family.  We have also been blessed with a  happy nineteen month old little boy.  He has his own issues with speech that we are battling.  Through having had my first child being diagnosed with autism, I have learned to be thankful for the small things that happen each and every day.  I don't worry as much about the things that I have  no control over. This was initially very difficult for me considering I tend to be a major control freak.

The Lord has truly blessed our family.  Even though this is not the path that I would have chosen, it has made me a better person.  Though we don't always understand, God's plan is perfect.

Jeremiah 29:11 says, "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

I am so comforted in knowing that He is the one in charge of my life.  It is such a weight off of my shoulders knowing that He is in control and wants my family to prosper. 

Now back to the lecture at hand...

Last week, I found myself in a situation that, for me, was completely foreign.  For once in my life, I was the mom who looked like I had it all together.  I had gotten up a bit early that morning (very rare), gotten myself and the kids bathed and dressed, actually fixed my hair instead of just putting it up in a pony tail, dropped my daughter off at preschool, and then taken the car to be washed.  I had just returned from a road trip to North Carolina and the Mini was, needless to say, filthy inside and out.  After I got the van washed, I cleaned the inside out thoroughly (another rarity).  

When it was time to pick up my daughter, I pulled into the preschool parking lot and was occupied getting my son out of the van.  The mom in the car beside me dropped her jaw and stopped me to ask how in the world I was able to have it all together and keep things so tidy.  For a brief moment, I was tempted to pretend that I was the perfect mom.  I felt like saying, "What do you mean?  My van and my children always look like this.  Of course I'm never stressed out or running behind."  (Yeah right!)  In actuality, I did not say anything of the sort.  I told her the truth.  That we had just returned from a road trip and that earlier that morning my car had, in fact, looked like a trash can had exploded on the inside.  

Sometimes we, as mothers, try to hold ourselves to an unattainable standard.  We look at the mother in the nice, clean van at preschool and think to ourselves, "Why can't I have it all together like that mom does?".  We compare ourselves with other parents all too often.  We tend to let jealousy and envy make us feel like we aren't good enough.  The truth is, no one has it all together all of the time.  We all have our hectic, messy, running around like chickens with our heads cut off moments.  

My life has gotten so much less stressful since I realized that I will never be perfect.  This was not an easy realization for me to make.  As a new mom, I strived to be what society thought of as the ideal mother.  After my daughter was diagnosed with autism, I realized that life is about so much more than the appearance of perfection.  It is completely normal to be a little frazzled at times.  Even we as moms don't always have to have it all together.  Our kids need to know that it is OK to not be one hundred percent together one hundred percent of the time.   Showing our kids that it is perfectly fine to be less than perfect teaches them that they don't have to fit some idealistic standard that society has cultivated.

We are raising a culture of "keeping up with the Joneses" kinds of kids.  It sometimes seems to be all about who's child is the smartest, who's child is the best athelete, who's child is the most well behaved.  I know that we should instill the core value of doing your best in all things, but we need to stop hammering the need for perfection into our kids and just let them be kids.  When they grow up, they will learn all too quickly that none of them are perfect.  There will always be someone who is smarter, faster, or just plain superior when they compare themselves to the world around them.  I think it is much more important to teach them to be happy with who they are as individuals. Strive to instill good morals and values all the while allowing them to be their imperfect little selves.  As long as they strive to do their best and be contributing members of society, those are the only things for which they need to hold themselves accountable.

The view from down here.

I was recently at an event with a group of mothers who were discussing delayed speech in children and when the appropriate time was to call Early Intervention in for an evaluation.  From my perspective, it is never too early.  If they find nothing, great.  But if they do find a delay, they can start therapy immediately.  If the child catches up, as most of the kids in Early Intervention do, the therapy can be stopped.  If  by chance they have a developmental disorder such as autism, the earlier the intervention is started the better.  If a parent is concerned about their child's development, contacting Early Intervention is a critical step toward their child succeeding in their preschool years and continuing to succeed in their future academic career.  

While the idea of delays and the need for Early Intervention was being discussed, one mother found it imperative to point out while Early Intervention is a good thing, it is also up to the parents to work with their children to teach them to speak. I felt she implied that if your child is not speaking at an age appropriate level, you as a mother must not be pushing them hard enough.  I am sure that she meant no harm in her comment.  But as a mother of a child with autism and another child with a speech delay, I know that I have tried everything I could think of to get my children to speak. This situation was just another instance where it was implied that I was to blame for my children's delays. 

I remember when my daughter was first diagnosed with autism someone at worked asked me, 'How do they know she has autism?".  I was still trying to understand the diagnosis myself.  The only thing I knew to tell her was that my daughter was two and didn't even have five words yet.  Her response was, "Oh, she's your first child.  You must do everything for her and she doesn't have to speak".  It was like I had been punched in the stomach.  Telling a mother that she must be the reason for her child's delays is extremely unfair.  Personally, my kids don't sit  in front of the television for hours on end.  I don't do every little thing for them enabling them to stay silent.  I get in the floor and play with them every day.  I make animal noises, car sounds and I try to teach them to play pretend with their dolls and action figures.  In other words, I have done and continue to do, everything in my power to get them to communicate.  

Sometimes, you just need a professional to come in to help jump start your child's communication.  The coaching that I have received from the speech therapists through Early Intervention has been invaluable.  The therapists are able to educate the parents on the best way to teach their children to communicate.  They work with children with speech delays every day.  They have the training to know what to do when nothing else has worked.  Often, even the most logical things can get overlooked when a mother is so consumed with worry that she can't even begin to think about how to teach her toddler to talk.  

The doctor once told me that my daughter would learn to communicate in the same way that I would learn a foreign language.  That totally made sense to me.  She just wasn't going to learn to talk just by being exposed to the language as most kids do.  It was going to be lots of work to teach her how to verbally interact.  It has even been suggested that I get the English version of Rosetta Stone to teach her how to speak appropriately and carry on  conversations.  I could have waited until the end of time to give her something to eat or play with.  It still wouldn't have forced her to speak when she didn't have the fundamental ability.  She wasn't wired to understand information the same way other, neuro-typical children learn. 

I know people mean well, but when a child is delayed, the last thing a mother needs to hear is that she isn't trying hard enough to get them to talk or interact.  It is very easy to look down your nose at others and judge when you are on the outside looking in. You may not even realize that is what you are doing.  A mother of normally developing children may think The mother of normally developing children may think that there should be a very simple fix to a child not speaking. But whe But, when a child is truly developmentally delayed, things aren't so easy.  When you have  a child that you can't get to look at you much less talk to you, communicating with that child feels like an enormous mountain you are continually trying to climb.   When a child is not developing normally, all the mother really needs to hear are words of support and encouragement, not wagging fingers and shaking heads.

  

 

IEP: Incredibly Emotional Processs

Lately, I have been focusing a lot of my energy on researching what the law says about education as it pertains to a special needs child.  More specifically, as it pertains to my special needs child who is going to be entering kindergarten this fall.  For those out there who are new to the IEP (indvidualized education program) developing process, I want to pass on a little of what I have learned so far.  I still have miles to go, but I wanted to share what little information that I have already gleaned.


First of all, the law governing the education of students with special needs is the IDEA (Individuals with Disabilities Education Act).  You can Google it and find a copy online. This law states that all students with special needs are entitled to a Free and Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE).  Of course, this leaves a lot of room for interpretation, so as a parent, you must be vigilant when it comes to advocating for your child.

Always tape record everything.  If it is not recorded via a audio recorder, and it isn't documented on the official IEP, it is as if it was never said.  Lots of times, school officials will make comments during meetings such as, "That gets worked on anyway." or,  "It doesn't really need to be a part of the IEP."  That may be true, but if it has been recorded, they must follow through and implement what was said in the meeting.  I also have a hard time remembering everything that is said in a two to three hour meeting.  An audio recording helps me to recall who said what and when it was said.  Be sure to let all others who are at the meeting know that you are tape recording it, otherwise, the recording may be inadmissible if you ever end up going down the road of mediation or litigation.  
 
I have learned that walking away from the IEP meeting and not signing the IEP speaks volumes.  It means that you do not agree with the proposed plan.  It also means that your child's case will quickly be moved up the chain to someone who probably has enough power to help to resolve the issues.  Many parents that I have spoken with don't realize that this is even an option.  Personally, I think that it is the best way to get your voice heard by those in power.  If the issues are not resolved, there is always mediation or, worst case scenario, litigation.  I pray that we never end up going that route, but we are going into each meeting with our eyes open to the fact that it is always a possibility.

If you don't understand the law, there are resources out there that can help you navigate the system.  Most school systems have a Parent Resource Center that can help sort through some of the red tape (this is a free service offered to all parents of preschool through high school students).  You can also get ideas from parents who have been there by attending support groups or networking with them on social media.  A word of warning though, be sure to take everything you hear from other parents with a grain of salt.  Being a parent of a child with special needs can stir up some serious emotions.  Every decision the school system makes can be taken very personally.  Also, be sure not to react to hastily at the school meetings regarding your child.  The heat of the moment is not always the best time to give your final opinion.  Sometimes you have to take the time to step away, take a deep breath, and reflect back on the situation when you are thinking more rationally. 

I truly believe that the majority of people working in the school system care about every child that attends their school.  (My parents are both teachers for goodness sakes!)  But, I also know the reality of the situation is that they have very limited resources and must pick and choose how and where to allocate the small amount of funding that they receive.  I encourage all parents of children with special needs to do their own research.  No one else is going to do it for you.  Go into these meetings as prepared as possible.  You must advocate for your child.  Give them a voice in each meeting that is held regarding their education.  If you speak for them now, maybe, one day, they will eventually be able to speak for themselves.