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.

the role of the church

Christians are set apart by their love for Jesus and their love for each other.  Loving people is not a job only for the pastor, elders, and church leaders, but a privilege of each member of the church.

We have encountered some really wonderful people who have embodied the spirit of serving, giving and loving.  Once every three weeks, there was a teacher in our son's classroom that went out of his way to get to know our son- learned how he operated, what he liked, and what he disliked, and played with him on his terms.  As our son got older, he would peek into the classroom and refuse to go in unless "his teacher" was there.  We became friends with that teacher and his wife because of the love and compassion that was shown to our son. To this day, the teacher will shrug off what he did, because he was just being a loving teacher, but he doesn't understand that he was in the minority.  We have told him countless times how his kindness made a difference, but he will never truly understand the impact he had in our lives.  What if volunteers truly understood that what they were doing is more than just babysitting kids-they are ministering to those children AND those children's parents?  What if all volunteers would go the extra mile?

The church we attended at the time was rather small, but they did a bang-up job with the hooplah in the school-aged room with the lights and the music.  Our older kids LOVED it; our little aspie hated it.  We kept him in a younger classroom for an additional year; however, there was a huge age span in that class as it was and other parents began voicing concerns and asking that our son be moved to another class-for the safety of their toddlers-due to our son's size, not his temper.  When asked by the leadership to make that move, we transitioned him to the school-aged room, about half way through his kindergarten year.  Even though we had read him books and prepared him for what to expect, it was imperative that his brother always be grouped with him, which was kind of a burden for his brother who was just in first grade.  He attended that class a couple of times, each with some sort of "incident" where either they asked him to go on stage, he was accidentally hurt in the midst of a game, someone spoke to him too harshly, or the music was too loud.  He got to the point where he was afraid to go to church.  Even walking in the door would elicit such a huge reaction that one of us would have to sit in the car with him.  After a few weeks of sitting in the car, we eventually gave up on going to church all together.

It's hard when all you want to do is go to church like a 'normal' family.  It's also hard when you know in your head that your church can't possibly do everything necessary to accommodate your child, but you don't know what is reasonable to expect.

You can't expect the way the children's program is run to change.  Let's start with what is an unrealistic expectation...expecting everything to change to accommodate the needs of a few.  What your church is doing with their school-aged kids is intentional and works for most of the kids in the program.  The loudness, silliness, fun and games get the kids excited about being there, it motivates them to invite friends.  True, there are some children who can't tolerate lights, loud music, crazy games, etc; and if your children are one of those kids who aren't doing well, you can be a part of the solution.  Here are a few questions to ask yourself as to how you may be able to assist your church in helping not only your child, but other children with special needs:

• Have you communicated the needs of your child clearly?
• Have you worked with your child at home, reading social stories or explaining what will happen at church?
• Would you be willing to volunteer once a month in another area to free up a volunteer to work with your child?
• Would you be willing to put a sensory-friendly program in place for children who can't tolerate the music and lights?
• Will you take turns with other parents providing safe snacks?
• Have you given the leadership time to really address your concerns?

So what is fair to expect from your church?

• The leadership of the church should be willing to learn about your child and his/her needs and any concerns you have with the current programming.
• The children's area should be willing to listen to dietary restrictions and if there are any that are life-threatening, to remove those foods from the classroom.
• The leadership of the church as well as the children's area should work with you on being solution-oriented in making church days comfortable and inviting for your child.
• Volunteers in the children's area should be made aware of different children's needs and abide by any plan that may be in place for that child.
• The parents of the special needs child should not be required to stay with their child during service, nor should siblings be required to take on extra responsibilities for their sibling and miss engaging in their own learning.

If you have honestly given your current church a fair shake, perhaps it is time to look for a different church.  If you have decided that your current church isn't going to work for your family, this is what I would suggest...think about things like 'What does your dream church look like?'   'What are your wishes and wants for that church?'  'Are there areas that you are willing to compromise on?'  When we decided to go "church shopping,"  we wanted to make sure we picked a church that was a good fit for all of us (not just our special needs child), so we made a wish list that looked something like this:

• Active youth group comprised of children from our sons' school district
• Established non-denominational Christian Church-not currently in a campaign to raise funds for a building expansion.
• No-food policy in the kid's area
• Understanding of food allergies
• Low volunteer to child ratio
• Adult volunteers in each classroom 
• Contemporary Worship
• Pastor who was more fatherly than brotherly (we were looking for some gray hair, thinking that wisdom comes with age)
• Established special needs program

We found bits and pieces in each church we visited; if we liked one, we would go at least two times, and then decide if we were going back or moving on.  We found a church that we really liked and visited five times, but decided it didn't have enough of what we were looking for, and moved on to the next church.  We continued to "shop" for four months and were drawn back to that church we had visited more times than any other.  We now call that church 'home.'  There was not a single church that fulfilled everything on our wish list, and no church ever will be perfect.  What really drew us back to this church and what it comes down to are the people.  Do the people in the church love each other?  Do they go out of their way for each other?  Are they friendly to guests?  Do people notice when you miss a Sunday?  Once I realized that, I understood that everything else would fall into place.

Most churches genuinely want to show love to their members.  I'm confident you can find a place that will be just what you need for your special needs child, as well as the rest of the family.

Later this week, as I conclude my series on "what not to blog about", some very polarizing issues will be up for discussion-vaccination, school choice, and dietary intervention. I can't wait to hear your opinions.

Who I am

I know exactly who I am...

I, am Rosemary's granddaughter; the spitting image of my father, and when the day is done, my momma's still my biggest fan.  Sometimes, I'm clueless and I'm clumsy, but I've got friends that love me, and they know just where I stand.  It's all a part of me, and that's who I am.

ok, maybe that's who Jessica Andrews is...but change the grandma's name to Pearl or Leona and you've pretty much got me.

Seems to me that people are waiting until later in life to get married and have babies for one reason or another.  Not me.  I was a very young mother.  I was DONE having 4 kids (none of which are multiples) by age 27, which is before most of my friends started.  I think that throws people off.  Doesn't hurt that I wear pigtails from time to time...I'm young, so I think people are expecting me to be clueless all the time, maybe?  Perhaps not as good of a mom as someone who waited a little longer.  Maybe they think that I had babies instead of going to college?  Maybe they think I'm old, but I'm so into my looks and staying young-looking that I don't know what's going on with my kids?  I don't know, but I think I'm certainly defying stereotypes.  

So, my kids are awesome for sure.  I love them all.  The list of challenges will blow your mind.  In my house (counting just the 4 kids), we have aspergers, dyslexia x 2, a bleeding disorder, ADHD, congenital vision impairment, giftedness, celiac disease x 3, sensory processing dysfunction, and life threatening food allergies.  

And if you really want to hear something funny, I went to college for special ed.-specialized in sign language interpreting, but we don't have any deaf kids in our house.  While I do think that it was all part of His plan for me to fall in love with sign language and to work in special education to allow me an opportunity to sit "on the other side of the table", I wasn't paying enough attention.  I learn new things all the time.  And as a parent, you are never prepared to sit at that table-no matter how many times you've been there, no matter how well you know the players on the "other side", no matter how much research you've done.  And you're not prepared because you are a parent and you are speaking with emotion.  The school is a business, they are speaking with a bottom line and limited resources.

I have a post coming about all about advocacy....stay tuned for that...

I decided to start blogging because I have a lot to say, and it's really hard talking to people with typical children, when you really need to talk special needs.  You start in with all the educational jargon IEP, ETR, MFE, FAPE, and they shut down.  They get that glazed look in their eyes and you know that not only do they not understand a word you are saying, they don't really care to.

I'm excited to share what I have learned-what has worked and what hasn't-and I'm hoping to learn from other parents out there that are further along on this journey than I.