More than a diagnosis

Lots of things happen to you as a parent when one of your children is diagnosed with some sort of special need.  It is almost as though you have to mourn the loss of the child you thought you had/were going to have before you can move forward with the child you actually do have.

Here, I am using a 7 step model, based on Elisabeth Kubler-Ross's 5 Stages of Grief.  I'm sure Dr. Phil or Dr. Oz would have something to say of the validity of this model; I agree, this is very linear and makes a whole lot of sense on paper when you aren't going through something, and while grieving, there is no right order, no "right way" to do it.  I will tell you that I have found life to be much messier than this "complete phase 1, move on to phase 2" model. Real life has backsliding, combining of phases, hanging out in certain phases, and sometimes totally skipping a phase, but I think these are all very valid feelings that parents go through.


1. SHOCK & DENIAL-You will probably react to learning of the diagnosis with disbelief. You may deny the reality of the diagnosis at some level, in order to avoid the pain. Shock provides emotional protection from being overwhelmed all at once. This may last for weeks.

2. PAIN & GUILT-As the shock wears off, it is replaced with the suffering of unbelievable pain. You may have feelings of guilt over things you did during your pregnancy-or didn't do. Maybe you know the genetic link comes from your side of the family and you feel somewhat responsible. Life feels chaotic and scary during this phase.

3. ANGER & BARGAINING-Frustration gives way to anger, you may lash out and lay unwarranted blame on someone else. Please try to control this, as permanent damage to your relationships may result. This is the time where you will generally release bottled up emotion. You may be questioning "Why me?" or "Why my child?" You may also try to bargain with God for a way out for your child ("I will go to church every week" "I will help other people with special needs as long as one of my kids isn't effected")

4. "DEPRESSION", REFLECTION, LONELINESS-Your friends may think you should be getting accustom to the idea of the diagnosis and moving on with your life; however, a long period of sad reflection will likely overtake you. This is a normal stage of grief, so do not be "talked out of it" by well-meaning outsiders. Encouragement from others is not helpful to you during this stage of grieving-especially if they have never received a diagnosis for one of their children.  During this time, you finally realize the true magnitude of the diagnosis and it depresses you. You may isolate yourself on purpose, think of what limitations this might bring as your child gets older, and focus on what your child may never do. 

5. THE UPWARD TURN-As you start to adjust to the idea of your child's diagnosis, your life becomes a little calmer and more organized. Your physical symptoms lessen, and your "depression" begins to lift slightly.

6. RECONSTRUCTION & WORKING THROUGH-As you become more functional, your mind starts working again, you are able to wrap your mind around what you need to do next, and you will find yourself seeking realistic solutions to problems posed by your child's diagnosis. 

7. ACCEPTANCE & HOPE-Eventually, you learn to accept and deal with the reality of your situation. Acceptance does not necessarily mean instant happiness. You will find a way forward. You will do what needs to be done for your child. And you will acclimate to life with a diagnosis.

One thing that I've shared with very few people is HOW LONG this lasted...we knew from the time my son was very young-probably six months old-that there was something going on.  I was pretty sure he hated me.  I couldn't comfort him-but my husband could.  I resented that.  I resented my husband and I resented my child.  How horrible is that?  Every other baby in the world could be comforted by my usual mommy way of comforting, but my child wasn't.  I really thought my child was broken.

At our 9 month check up, I mentioned all this to my pediatrician and he told me that not all babies are the same, give it time(hanging out in phases 1-3).  I mentioned it again at our one-year check, "wait and see" again, finally at our 18 month appointment, he asked me to look up and read about sensory processing disorder and call him if I wanted to talk more about it.  So there I was, still hanging out in phases 2 and 3, adding a little of phase 4 for good measure, pregnant and trying to parent three kids, one of whom I resented.

I finally had a name to go with the bundle of symptoms that had been living in my house.  I found there were some things we can do to address these symptoms, so while phase 1 slipped back in and 2-4 were still a very real part of what was going on in my head, my body started carrying out phases 5 and 6.

More symptoms persisted, so more doctors were visited.  He was two years old when I started to research with fervor and began to understand who my child was and what my child needed. This really moved me away from phases 1-4 (though those feelings crept in from time to time with each new realization and each new label)and on to phases 5 and 6.

The more I learned about my child and the more I started applying that knowledge to my parenting, I slowly moved into phase 7.  By the time he was three years old, I was there.  Only took me two and a half years.

During those two and a half years, I lost touch with friends-and I lost friends-who just didn't understand all that was going on.  I was isolated in my own family, only allowing immediate family members into the personal hell I was going through, and even then censoring many of my thoughts.  Two and a half years of denial, guilt, anger, resentment, isolation, censoring, and loneliness is a long time.

I don't want to act like everything has been sunshine and rainbows since that time-it certainly hasn't, but I love that this grieving process ends with HOPE.  There is always hope.  

More important than hope, is the ACCEPTANCE.  This is your child.  As a parent, it is your job to love this child unconditionally-diagnosis or no, difficult or not.  Once I began loving my child for who he was and not who he wasn't, once I stopped trying to make him be consoled the way I thought was "right" and started comforting him the way needed me to, once I stopped thinking of him as broken and started thinking of him as special, that's when he finally, truly felt my love.

I'm a pretty quick learner, and it drove me crazy that my husband got there years before I did.  I felt like I had so much time to make up.  Loving my child isn't hard; understanding how to love him his way took years...

Let me encourage you.  It's okay if you don't get there right away.  To really be genuine in your relationship with your special needs child, you have to go through the process.  For some, like my husband, it is a process that will take a matter of minutes each time something new develops.  For others, like me, it will take much longer.  

As you are going through these stages, reach out to those around you.  Try not to shut people out.  Ask for help.  Have open dialog with your spouse about where you are in the process and how you are feeling.  Don't sugar-coat things or say what you think people want to hear.  Most importantly, allow yourself to feel what you are feeling.  

Realizing that your child is not going to have a "typical" life is huge-but when you finally accept it, you will be able to hope in the future.

what do you think about school choice?

Public School or Private School: That is the Question

Nothing is more frustrating than watching your child struggle with school work.  The first thing I will say on this topic is you have to make the school where your child is currently attending your ally.  It doesn't matter if your intentions are to move your child to another school in the near future, it doesn't matter that the school is doing things in a manner of which you don't approve and it doesn't matter that you are so angry you could spit.  You are working with teachers and specialists whose whole job is to see each student succeed at the highest level they are capable.  Maybe they aren't doing it.  Maybe you feel like they aren't even trying.  Maybe so many situations have come up that you just want to throw a temper tantrum and storm out of the school with your child in toe.  I've been there.  Here's the truth-you can't do that.  Well, you can, but it's not good for your child, and won't endear any of the staff to you.  

Here's what I would suggest as you are thinking through this process:

Give the school the benefit of the doubt.  Hold them accountable, yes, but believe that they aren't doing things to make you mad.  Also understand that there is so much red tape and law junk that can, at times, get in the way of the overall mission to educate your child.  You may have to go to bat and advocate (oh, there's that dirty word again) for more than the school wants to do.  I've said it before and I'll say it again here-you are looking at a child, they are looking at a bottom line and how that child will fit with line in mind.  School programs are not "one size fits all," which is why there are Individualized Education Programs (IEPs).  


Make sure the interventions that school has put in place for your child researched-based.  True, you can find research to support any stance, but have you looked at the interventions that are being used as it relates to your child's specific diagnosis?  A reading intervention program that is appropriate for children whose first language is not English will probably not be a good fit for children with dyslexia.

If you know of a program you think would be appropriate for your child, suggest it.  It has been my experience that schools don't love when you tell them how to do their job; however, it has also been my experience that if approach the person working most directly with you child and share your concerns and various ideas you have, he/she will be your best ally and will go to bat for your suggestions if they are well-thought-out and research-based.

Monitor Progress.  Have you ever heard the definition of insanity is doing the same thing over and over and expecting different results?  If you have an intervention in place and you are doing the work at home and the teachers are doing the work at school and months pass with little or no progress, be honest with the school and tell them what they're doing isn't working.  I don't know that there is a magic formula for 'how long is too long', but I will say this:  research shows that for every six months a child falls behind, it takes two school years to catch up.  Children who fall two grade levels or more behind are unlikely to ever catch up and are four times more likely to drop out of school than their peers who are on grade-level.  I would say six months is too long to wait for something to fail.  I would start talking to teachers if there is no progress for more than a month.

Make Sure the School Teaching the Way Your Child Learns.  If your child has been through several interventions and things aren't working, schedule another IEP meeting.  Sometimes it might take a special school, other times, intervention at your current school and outside tutoring will do the trick.  While I totally believe you have to be on a team with whatever school your child attends, you also have to remember, they are responsible for your child while he/she is at their school.  You are responsible for the man or woman your child becomes.

How do you even know what you are talking about, Jacki?  When things are concepts that someone has never personally been through, it's hard to take them at their word.  I have been through this choice.  More than once.  I observed that our public school is excellent.  (Excellent with Distinction if you look at their state report card.)  Looking at their data, they are very impressive, but they do their best work with the average to high average kids.  I have one of my four children fall into their "sweet spot."  I have considered alternative school placements for my other three children, and at the end of the day, I moved one.  It was the hardest choice I have ever had to make.  I have one child in a school that specifically teaches children with dyslexia and ADHD.  He enrolled in the new school at the beginning of second grade with his reading skills testing at lower than pre-K level.  His first year, he went from lower than pre-K to middle of first grade.  He is making gains at a rate of more than one years growth in one school year because they are teaching the way his brain learns.  Sometimes you need a specialist to do that.  I also have another child with dyslexia who remains at the public school.  I really wanted to send him to a specialized school because of their vast experience in teaching children with dyslexia; however, he wasn't offered a spot.  When I knew that my child would be staying at the public school, I knew that I had to revise my way of thinking and hammer out a plan that I thought would work, then go to the school with that plan and hope they said yes.  They did...to some of what I proposed.  We compromised on other things, and I had to hire outside help as well.  We are doing the best we can with the concessions the school was willing to make.

When money isn't there and you don't have a choice...We are very fortunate to have found a private school; however, there is a price tag that comes with the expertise they offer. I'm talking I-could-send-my-kid-to-college-for-less price tag.  Some children could benefit from an alternative school placement and their parents simply can't afford it.  So, what are you going to do?  You can look at charter schools, you can look at open-enrolling in a different school within your district, or you could call and IEP meeting and really nail down a program that will work for your child.  You have options and not all come with steep price tag.

At the end of the day, I hope you will be confident in your decision.  I have to remind myself on almost a weekly basis that I am doing my best with the options available.  I still second guess some decisions and I'm still making changes as I go.  I feel like the target is always the same (a fine education) but the obstacles keep changing my aim...and obstacles are many when dealing with education.  Good luck in your navigation!