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.

food for thought

 I apologize for the long lapse between my last blog and this.  I've had a very hard time coming up with what I really thought was what people needed or wanted to know about some of the "controversial" issues that I pledged to talk about.  I want to kick of the week with a little background on that struggle.

I am not very active politically.  I do research on issues I care about and vote accordingly, but that's about as far as I go.  I'm not one to stand on the lawn of the statehouse, nor do I write many letters to my elected representatives.  I believe the real way to move towards change is to educate.

I want to educate the schools and other parents-teaching them lessons that I've learned from the school of hard knocks. I would love people to look at how practical things they do in their every day lives can change the course for their families and children.

Recently, a new statistic came out: 1 in 50.  If you live in the world of autism, you know what that means.  One out of every 50 school-aged children currently have a diagnosis of autism.  Some people want to say that it's increased awareness, some people believe that the numbers have increased due to the identification of higher functioning kids.

Here are my thoughts on why we are looking at 1 in 50:

Before we had meters that could read gases and indicate the safety of the air quality in mines, the miners would take a canary in a cage down with them into the mine.  When the canary stopped singing, the miners knew that it had succumbed to low oxygen levels or poisonous gases,  and they would leave the mine immediately.  The theory was, the canary, which is so much smaller and more sensitive to gases and has a more rapid heart rate compared to humans, would get sick much more quickly than a grown man.

Our children are an indication that something is wrong with the air we are breathing, the food we are eating, and the medications we are putting in our bodies.  I came across this new "political party" on Facebook called the Canary Party.  The clever naming of this group of individuals likens the children with auto-immune problems to that canary.

Check them out on Facebook: https://www.facebook.com/TheCanaryParty?fref=ts

In my next entries, I will be discussing some very polarizing topics:  vaccination, school choice, and dietary intervention. I'm not going to spout my opinion, because we all know the opinions are like belly buttons (everybody has one).  My hope is I will give you some food for thought-things to think about and to do some research on so that you can have an informed opinion as to what is right for your child.  I am looking forward  to diving into these topics with you!

special needs family

My friend Lisa gave me some very good insight, we aren't a family that has one member with special needs, we are a special needs family.  Wise woman.  Lisa and I started as neighbors who were friendly, but more acquaintances than friends.  It was pretty clear there was something going on with her son, but like I said, we weren't all that close, so asking what he "had" would be rude.  After all, it was mere curiosity...until it wasn't.

When I began to see the same patterns in my child as I had seen in hers, I called her and poured out our story.  I told her I was tired because my child never slept, I felt like I had lost friends because my child wasn't like my friends' children, I confided in her I was battered and bruised because my child was so frustrated that he acted out by hitting and biting, I didn't know what to do next-so at the risk of being rude, I asked her to share her story with me.  Her children are quite a bit older than mine, so she's been at this parenting thing for longer than I have, and since experience is the best teacher in the world, I wanted to learn from hers.

I've learned if I choose to see all the positive things about our family and the way we relate to one and other, and how that can carry into the world, my whole outlook is better.  Not going to lie, this isn't always easy; but when I sit back and really think about the cooperative, sympathetic, broad-minded, and patient men we are raising, I can't help but feel blessed.  Here are some things that I've come to realize and appreciate about special needs families:

Your normal will be different than most other family's in your circle of friends.  We don't go out to eat much.  Our food at home is generally pretty bland and had to be white at one point.  Our kids didn't have play dates with their friends from school, instead, they played with other siblings in waiting rooms at various doctors offices and clinics.  Our Saturday and Sunday were just as structured as school days.  We had times that it was okay to eat-breakfast at 7, lunch at 12:15, snack at 4:00, dinner at 6:00-our food had to be locked up between those times..  We rarely invited our kids' friends over so as not to disrupt the routine or have them witness an outburst.

There will be unspoken rules that you and your other children will just know.  We had assigned seats in every room of our house.  We had a child who would strip down to rubber rain boots with no warning because that's just what he did.  Don't touch his blanket, don't touch his plate, don't touch his food, don't touch his face, don't touch his head, don't touch him at all unless he sees it coming, don't sit in his seat, don't talk too loud, don't use the word purple, don't say haircut, don't laugh unless he laughs first, don't take his picture, don't touch his race cars, don't touch his train track, don't change the channel, don't run the vacuum...our kids knew all the rules.  Other kids didn't have the kind of rules our kids did.  Our rules didn't make sense, but they did make life easier, not only for our child with special needs, but for all of us.

Make sure you educate your other children so they don't become resentful.  We read books to our kids to try to help them understand a little of what was going on and what made us the family we were.  One such book was Rules by Cynthia Lord.  We did lots of work from Sometimes My Brother by Angie Healy.  We read Understanding Sam by Clarabelle Van Niekerk and Liezl Venter and My Brother Charlie by Holly Robinson Peete.  We didn't hide anything and thought that providing them information would empower them and make them more empathetic.

Your other kids will learn from watching-encourage this.  When we did go out to eat, our kids would behave and sit like gentlemen-that was the rule-until one couldn't sit like a gentleman and he would begin his nervous progression.  Wiggle, wiggle wiggle, stand up, step-touch, step-touch, step-touch (this escalation could last between 5 minutes and 20  minutes), then pace from behind one chair to behind the next chair and back (this was generally short-lived 5 minutes or less).  When the circling of the table began, it was time to go.  All of our kids knew this progression intuitively; we did not sit them down and explain it, but they saw it once or twice and knew what was coming.   They called the circling of the table "sharking".  As soon as the "sharking" began, it was time to leave or suffer the consequences.  We still have a "shark" if we are in a noisy place, with unfamiliar people, or are taking too long.

Your other kids will learn from living-lean on this.  There was a language that our special needs child made up, in which we were all fluent.  People not part of our special needs family could not understand it, and was complex and had really weird vocabulary that was all made up of non-sense words, each had a meaning.  Sometimes, our other children would have to interpret-even for us.

We didn't realize what a special needs family we had become until one day at the playground our special needs child was without his brothers.  We thought he had been playing all the times we took him to the park, and it even looked like he was making friends.  So, on our one-on-one time with him, we took him to the park.  We didn't even get the step touch progression, we immediately went to "sharking" and had to leave after less than 10 minutes.  Come to find out, his brother was the only reason he would play at the park and we didn't even realize it was happening.  On his own, he shut down; he had come to depend on his brothers to support him in even the simplest activities.

Make a plan, but realize that some things will still be hard.  Trips to the grocery store were unbearable.  The sounds were too loud, the lights were too bright.  Forget long car trips.  If he was on the couch and grabbed his blankie, the day is done-we couldn't even think of leaving the house again.  We would go to great lengths to hide his blanket if we knew there were additional errands to run or places to go.  Share the plan-first we will go here, then here, here we will be doing this.  The last place we will go is here.  If you are good for all of that, we will go home and give you some computer time.  (make sure all the children who behave are rewarded).  Life will be okay if you deviate from the plan, but sticking to it will make your day smoother.

Be patient with extended family.  When at a functions with extended family, we found that they didn't understand the rules.  They didn't understand not to hug, they thought it was rude not to be greeted, they thought if they pushed harder, he would "come out of his shell".  Have I mentioned his lack of a filter?  He will say exactly what he is thinking as soon as he thinks it, which sometimes comes off as rude or disrespectful.  Family members have caused meltdowns as they tried to be loving.  His brothers always run to the rescue-they are a part of his immediate special needs family-they know the rules, they know the signs, they know the triggers-and they help him without being asked.  Most of our extended family is catching on to what he needs.  They accept hugs that are offered, but never ask for a hug.  Sometimes to get him to talk, you have to ask questions, but not too many.   He will answer about 2 and then shut down.  When his siblings see the shut down begin, they are quick to step in so he doesn't get flustered.

Consider the needs of the neediest. Sounds kind of unfair to let the needs of one dictate the course of all, but when you have a child with special needs, this new normal happens rather naturally.  One thing I've noticed about my kids is that they are much more in tuned to each other than the average siblings.  Over the years, his brothers have voiced their feelings quite freely about the amount of time we spend at therapy, the amount of time we spend in the car, the amount of crying that comes out of one kid.  Our oldest put two and two together and he came to us to have an honest discussion about how much we were spending on the therapies, the tutors, the doctors, the schooling.  These are things that kids can't fully understand, and probably will never think of as "fair" until they have children of their own, but we can (and do) have honest conversations about these topics.

            

Enjoy the unique life of being a part of such a special family.  So, our special needs family makes allowances where other families don't have to.  We have created a loving environment where all of our children are comfortable.  Our children have a heart for each other and look out for others' needs without having  to be reminded  because it has always been something they had to do.  I don't know if our family would be as close if we weren't a special needs family.  While we do some things quite differently, it works for us.

Make sure to check back for my next post about maintaining friendships (special needs friendships for moms)

Find more about the books I mentioned here:

http://www.amazon.com/Sometimes-My-Brother-Understand-Siblings/dp/1932565310

http://www.amazon.com/Rules-Cynthia-Lord/dp/0439443830/ref=sr_1_1?

s=books&ie=UTF8&qid=1362662928&sr=1-1&keywords=rules+by+cynthia+lord

http://www.amazon.com/Understanding-Asperger-Syndrome-Clarabelle-Niekerk/dp/0974721719/ref=sr_1_1?ie=UTF8&qid=1362663211&sr=8-1&keywords=understanding+sam

http://www.amazon.com/Brother-Charlie-Holly-Robinson-Peete/dp/0545094666/ref=sr_1_1?s=books&ie=UTF8&qid=1362663231&sr=1-1&keywords=my+bother+charlie

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.