Why does it shock me every time?

So, Davis has been excited to go back to school-probably since the first day of summer break.  This is a good sign.  He loves school now that we have him at a school that gets him. He is "normal" at this school; and even when he's not, the other kids all get it.  One thing I have raved about is that he looks like a typical child when people see him in this context.  He has been chosen to be an ambassador to students that come and visit.  He has friends and they like him-even with all his Davis-ness, because they have quirks, too.
Today was meet the teacher.  I love that they do it on Friday and don't start school until Wednesday.  I'm thinking they know their clientele need a little additional time to process the change of the new year.  He couldn't wait to go, and was rather excited that he didn't have to wear his uniform.  He talked about all the people that we would see, and tried to remember the name of his new teacher.
We show up and were directed to room 12.  Uh-oh!  We had been preparing him for room 15 all summer.  He was in room 12 last year.  All the classrooms at his school are multi-leveled, but it's all about precedence for him.  He spent one year in one class room, one year in the next classroom, and fully anticipated to moving up to the next classroom this year.
Here's the problem...all of his friends did-with the exception of one.  His eyes welled up with tears as he whispered "Did I flunk?"
I tried to explain looping, I tried to explain that there were both third and fourth graders in his class, I tired to point out that he would be with his best friend.  But then the step-touch started, the eye contact dropped.  I gave the teacher big eyes-like "what the heck?" but didn't want to talk about it in front of him.  I tried to send him in the room, but he refused to go without me.
There were no other kids in the room, plus it was his class last year.  This should have been a non-issue. 
He wouldn't leave my side.  So in we went, but he wouldn't look for his desk and started chewing on his hands.  OH NO!  He doesn't do asperger's at school anymore.  I tried to get him in the right mindset.  I encouraged him to go into his second grade class room and he see his best friend.  "I'm nervous."  (oh, I can't take it).  His teacher walked him next door and I broke down. 
Now, let's be fair.  I have had two awful days.  It probably wasn't just the school experience that had me in tears, but this crap is sneaky.  I had to back pedal so the teachers knew I wasn't questioning the placement, but that I'm sad because he "doesn't usually have" aspergers at school.  I'm a mess.  I should probably be committed.
I know he has the diagnosis.  I see how he acts in new settings.  Why does it shock me when asperger's shows up?  I don't know, but it gets me every time.
In the words of Forrest Gump, "That's all I have to say about that."
When we left the building, he had been happily playing with friends and was able to tell me two reasons he was happy he had been looped.

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 vaccination?

To Vaccinate or Not to Vaccinate? That is the question.

I can vividly recall a conversation I had with my sister-in-law when my oldest child was an infant.  She was questioning my choice to vaccinate as our pediatrician recommended.  I didn't really think there was much of a choice involved; therefore, I called her irresponsible for thinking that "herd immunity" would protect her child that she was choosing not to vaccinate...it did wonders for our relationship, I promise.  I'm not sure I can think of a more hot button issue.  I wouldn't say that I've done a entire 180 on the subject of vaccination-thinking that you should never vaccinate-and I'm also not saying that I think vaccinations are all good, but I am saying that I don't think the CDC's schedule is right...especially for my children.  The more I learned, the more comfortable I felt about certain shots and uncomfortable I felt about others.  My children are considered "fully vaccinated" and "up to date;" however, looking at their shot records isn't enough to get the picture of their vaccination history.  We did one shot at a time, and would use dietary supplements in the weeks leading up to the vaccination to bolster their immune systems.  We wouldn't get shots when our children had runny noses or low-grade fevers, although we were told by one pediatrician that we saw that it was perfectly acceptable to give shots during a cold (his reasoning was that all kids have a runny nose most of their first two years-we found a new pediatrician soon after that comment).  We also had titers drawn before we made the choice of whether or not to booster, a practice not used by most doctors.  We still count on their good ol' immune systems to ward off the flu as opposed to getting a yearly flu shot.  There is no one right answer for everyone, only one best answer for each child.  I have four children and none of them followed the same schedule.

If I had to go back and make the vaccination choices for my kids knowing what I know now, I think my decisions would be different, and I don't think I would have gotten certain shots.  Perhaps the auto-immune conditions that came out in my kids would not have reared their ugly heads, but perhaps something else would have been the trigger.

I would never be so bold as to claim "the (insert you least favorite shot here) vaccine caused my child to have (insert auto-immune condition here)."  Your genes are your genes.  If you have an auto-immune condition, you are born with a genetic predisposition of developing that condition-that is the genetic side of things.  Where you live, the shots you get, the food you eat, the water you drink-that is where the environmental factors come in to play.  

So today, vaccination is the environmental factor we are looking at.  Here are my suggestions on how to make a good decision when it comes to vaccinations for your child:

Research before you vaccinate.  Read up on both sides of the issue.  Read non-biased educational materials not only on vaccines in general, but also on each vaccination (note: the CDC is about as biased of a source as you can come by).  No matter where you stand on the issue of vaccination, you will find plenty of research to support your viewpoint.  Read case studies and anecdotal evidence.  Discuss your findings and well as your feelings with your doctor.
There are some shots I feel absolutely comfortable with...for example, the vaccine for Polio has been researched, refined, followed and given for a long period of time-that one was a no brainer for me.  Any shot that comes in a grouping (for example DTaP-diphtheria, tetanus, pertussis) is something I am going to want to pull apart and look at (and give, should I decide to do so) each component individually.  

Public schools (in America, at least) cannot refuse your unvaccinated child.  Should you make the choice to delay vaccination or not to vaccinate at all, public schools cannot exclude your child.  You do have to fill out a special form called a vaccine exemption.  Schools will send letters saying your child will be excluded unless they have a certain shot by a certain date.  What they really mean is either you need the shot or to fill out the vaccine exemption by that date.  Schools don't put it out there as a choice, but it always is.
I mentioned that my children are considered "up to date" but their shot record wouldn't tell you that story?  I have drawn titers on more than one child to prove immunity and no need for a booster; therefore, I either provide the blood work to the school that shows the immunity or I fill out a vaccine exemption.

Learn what titers are and have them tested before boosters.  My doctor explained to me that many children gain immunity after only one shot; however, some don't.  Instead of testing all children to see which ones need boosters and which ones are already immune, the CDC schedule calls for all children to receive boosters.  Even if you are very pro-vaccine, most people aren't pro-shot in their child's leg, so a routine blood draw can tell you if the shot is necessary.

Understand that some pediatricians are very pro-vaccination and want to follow the CDC schedule down to the letter.  You can have a very firm belief about vaccinations; that doesn't mean your pediatrician will agree with you.  There are some practices that will tell you that you do have a choice, your choice is to vaccinate or find another doctor.  This is something to think about if you totally love your pediatrician or if you move and are looking for a pediatrician.  How important is your vaccination stance to you?  Are you willing to go the extra mile to find a pediatrician who has the same philosophy you do?  We were very lucky to find our pediatrician.  She was actually on the news talking about her viewpoint on vaccinations and while we were still questioning many things about alternative schedules, we were intrigued enough to make an appointment and do more research.  I have heard of people in a brand new city, being turned away from doctor after doctor due to their stance on vaccination-the practices simply won't accept their unvaccinated children.

So the truth is, I'm not at all in a position to tell you what to do about vaccines.  I can tell you what we did, and encourage you to do your own research.  As I've said, each child is an individual; therefore decisions need to be made individually.

Next question:  what do you think about school choice?

Job and his wife

When we first received a diagnosis for our son, our faith was somewhat shaken.  We asked God lots of tough questions:

• Don't you love this child?
• Don't you care that his life will be hard?
• Do you really think we are equipped for the job of parenting him?
• Couldn't you have chosen a different family?

We were really angry at the world and at God, but after living with it for several years now, and being on the recovery side of autism, it's hard to look back and really capture exactly what we were feeling.

There is no shortage of Biblical characters who experienced trials.  Job immediately comes to my mind when I think of suffering,   I read a blog post a few months ago, which was several years after I was past all of these feelings and had made peace with God, but it took my breath away with its authenticity and rawness. It was written by my friend, Mary Evelyn, who, by the way, is a hoot.  She has been writing about her journey with her husband and precious son, Simeon, who happens to have spina bifida.  I asked her if I could share what she wrote about the Biblical character she related to because what she wrote is just so good and I couldn't say it any better. So, with her permission...

Mary Evelyn Smith presents:

Job's Wife

"Then the LORD answered Job from the whirlwind:"Who is this that questions my wisdom with such ignorant words? Brace yourself, because I have some questions for you, and you must answer them. Where were you when I laid the foundations of the earth?"
--Job 38:1-4 NLT

I don't understand the book of Job.

Now, before I begin, I feel I should point out that there really is no comparison to the guy.  I understand my troubles are nowhere near his.  I've got nothing on Job but even though I'm not sitting in ashes and scraping myself with potsherds, I am in the midst of quite a struggle and he's been on my mind.


So, I just don't get it.  I don't understand why we're okay with this story and personally, I think it's pretty rotten.

Highlights from The Book of Job (Mev style):

Act One:

Here comes Job!  What a fantastic guy!  How could God not notice such upstanding behavior?  Give this guy some cattle!  Give this guy some sons and daughters!

Act Two:

God: Boy, do I love Job!

Satan: He only acts so great because you're nice to him.

God:  Wanna bet?

Act Three:

Look out, Job!  No more cattle.  No more sons and daughters.  Eww!  You've got boils and all manner of nasty stuff going on.  Sheesh.  Still praising the Lord, I see.  If you insist.

Job: Blessed be the name of the Lord.  He gives me stuff and he takes it away.  Whatever he wants.

Job's Wife: (giant eye-roll) Ugh, are you kidding me?!  Curse God and die.

Job: You sure are a foolish woman. 

Act Four:

Job wishes he were dead and his buddies proceed to give him a bunch of bad advice.

Act Five:

God asks Job a bunch of rhetorical questions (Where were you when I made the earth?  Could you catch a sea monster?) and Job admits that God is in charge and all-knowing.  God blesses Job with more cattle and more sons and more daughters (the oldest daughter was named Jemima by the way.  Who knew that was a Biblical name?). 

THE END

So there it is.  When I heard this story growing up, Job's wife seemed like quite the villain.  I remember sitting in Bible class (Christian School!) and learning about this monster of a woman.  I imagined her sulky and plump , waving off Job's wise words and grumpily sassing back her famous line-- curse God and die!  What a sourpuss!  But now, in the midst of my own troubles, her response makes a lot more sense to me than Job's goody-two-shoes behavior.  I know we should be like Job, but can we really blame his wife for her frustration?  Those were her sons and daughters too.

I'm trying to be like Job.  I'm trying to stay faithful but in the past few days I've felt more like the story's villain than its hero.  I am angry at God for not intervening.  I don't understand why He isn't easing our circumstances.  Sometimes I feel like He doesn't care about my son.  I love Simeon and I would do anything to make this easier for him.  If God's love is bigger than mine, why does he seem so far away?

Job wondered why he was born only to suffer.  He wished for his own death.  He wished he had never been born.  But he was never angry at God.  How could that be?  

Tomorrow I will be Job.  Today I am his wife.

"But Job replied, 'You talk like a godless woman.  Should we accept only good things from the hand of God and never anything bad?' So in all this Job said nothing wrong"

--Job 2:10 NLT

You can find Mary Evelyn's blog here:

http://whatdoyoudodear.blogspot.com

special needs friendships for mom

I've already talked a little about how parenting a special needs child can change your marriage and your family, but what about your friendships?  Friendship is important for every mom, no matter who you are or who you are parenting.  Your family and spouse are great to support you, but you also need friendships, in addition to these other relationships, to fulfill your needs as a person.  According to research performed at the Mayo Clinic, friendships enrich your life and improve your health by increasing your sense of purpose and belonging, boosting your happiness, reducing stress, improving self-worth, and helping you cope with trauma.

I've mentioned before that I lost friends and isolated myself during our diagnostic process.  Upon first noticing that something is different with your child, your reaction is something very difficult to control.  When you are in the midst of getting a diagnosis, you are dealing with all sorts of feelings, and as you acclimate to everyday life of parenting a child that takes the extra effort, as most special needs children do, it is all consuming.   Relationships become less of a priority when you are just trying to get through the day, but they are more important to your health than ever during a hard time.

Here are some things that could change for you:

• You don't have time to make the phone calls you used to make
• It's not comfortable to go to the places you used to go
• You are too tired at the end of the day to go out with friends you used to enjoy spending time with
• Trips to visit out of town relatives that you used to make just seem impossible

One thing I notice, looking back, is much of the distance that I felt with my friends was largely self-imposed.  I was involved with a weekly playgroup when my third child was born.  I enjoyed the moms in the playgroup and some of them are still good friends of mine to this day; however, as my child got older and wasn't able to socialize the way the other kids did, or wanted to sit on my lap while the other kids played, it was hard for me to feel comfortable.  The other moms probably didn't think much of it, but I had quite the imagination for what they could be thinking:  

• 'Isn't she worried about her child not talking?' 
• 'Doesn't she wonder why all he wants to do is sit on her lap?' 
• 'Isn't it weird how much he cries?' 

I have no idea if any of the moms even noticed.  To be quite honest, when I would talk about what I was worried about, many of the moms down-played the symptoms I was describing, making me feel like I might be crazy to be so worried.  They weren't trying to make me feel crazy, they just wanted me to feel better.

I can recall a time when my child had a rash all over his trunk.  It was red, wasn't raised, appeared in perfect circles, and didn't seem to bother him; but my spotted baby sure did bother me.  He was probably around a year and a half when the rash first appeared.  The spots came and went for the better part of a year.  We probably went to the doctor about ten times over the spots.  Other doctors in the practice were consulted and no one really had an answer.  One suggested it could be a reaction to a food, but the others seemed to disagree with her.  As we got more desperate to find a way to make the spots stay away for good, we decided to try an elimination diet.  We didn't really know what we were doing, but I had it narrowed down to strawberries or wheat, so as long as we were avoiding those two foods, the spots stayed away.  

One day, after being spot-free for nearly three weeks, I went to playgroup at a mom's house that puts Martha Stewart to shame.  Her house is always perfectly clean and impeccably decorated, the unsightly baby proofing was no longer necessary as her children were a little older.  On this particular day, my child wandered away from me into the family room.  While he wasn't playing with all the other children downstairs in the play room, I called this progress and was just so relieved that he wasn't on my lap.  I kind of just let him do his own thing, checking on him periodically.  One time, when I peeked in the room to check on him, I found him happily munching on a bowl of potpourri. 

The hostess felt horrible!   I told her not to worry-I should have been paying more attention-and I really meant it.  A while later when it was about time to leave, I laid my son down to change his diaper and was so disheartened when I unbuttoned his onesie to see that the red spots on his torso had returned.  Only MY kid eats potpourri, only my kid gets spots, I began to silently cry as I finished the diaper change.  The other moms looked on like they didn't know what to do with me.  I was a mess over spots-and I'm sure my reaction didn't do much for making the lady who was hosting believe that I wasn't upset.  I went home and called poison control and was assured that the potpourri in question was not toxic and while not an authority on the subject of spots, the friendly operator didn't think ingesting potpourri could have caused a reaction as quickly as I had described.  I called my husband to tell him the spots were back and about our son's little smell-good snack.  My husband told me that it wasn't the potpourri that caused the relapse, but instead, he was fairly certain that it was the strawberry poptart that he had been allowed to eat for breakfast.  (For the record: I didn't not follow my marriage advice about not snapping at your spouse in this instance).

That was actually one of the last times I went to playgroup.  It wasn't that the other moms didn't want me there, or that they felt uncomfortable around me or my son, it was that I didn't want to be there.  Making the mental notes, comparing my son to other kids, having a list of worries in my brain a mile long, and having well-meaning friends tell me not to worry, it just wasn't fun anymore.  I would still go to girls' night out, and I truly did enjoy their company, but it just felt like I lived in a world that was a million miles away and that we had little common ground.

I felt like some of my best friends during this time included my child's psychologist, my child's social skills teacher, my child's Occupational Therapist, my child's pediatrician, my child's tutor, my child's speech therapist, and my Board of Developmental Delays Service Coordinator.  The stinky thing about those relationships, though, is that they aren't personal.  These people would go to great lengths to comfort me when it came to my child's progress, but weren't really available for chats on the phone when I needed to talk.  These people were not the ones I could go to and discuss marital issues or financial strain.  I needed true friends that cared about me-even if we didn't have special needs in common, who would be there if I needed to talk-even if they couldn't offer advice.

So here are some tips on how to maintain those friendships when you seem to have less in common than you once did (based on tips given by Gretchen Rubin who wrote The Happiness Project, adapted by me to fit a special needs parent's point of view):

• Be supportive when your friend has bad news-do not try to relate a story about when you got bad news, do not talk about your issues, listen to hers.  You aren't the only one dealing with "stuff" and you have to realize that no matter how big your stuff feels, her stuff feels just as big to her.

• Be supportive when your friend has good news-get over yourself and be happy for your friend.  People will stop sharing with you if you are always a wet blanket.  Also, don't always be the one with bad news.  You can celebrate small gains and your friends will be there to encourage you.

• Don't gossip; Do keep secrets-relaying news about a common friend's situation may feel like a way to connect, but in the end, you will end up with fewer friends and it will have nothing to do with who you are parenting.

• Don't criticize parenting, children, or spouses-period.

• Show up-nothing can replace spending quality time with each other.  You will send the message to your friend that she is still a priority in your life, even if you both have a lot going on.

• Use facebook, email, text or other social media to connect-it doesn't take long, but allows your friend to know you are thinking of her.

• Cut her some slack-and hope that she'll do the same for you.  We make allowances for those we love.

• Remember your common ground-this is probably not a forum where you are going to talk all about the cutting edge treatment you are trying.  You surely can mention it because it is part of what is going on in your life, but remember what you used to talk about, and remember that a conversation is interesting to both parties, and involves turn-taking.

One thing to remember is things do happen in friendships-not necessarily a falling out or conflict, but a drifting apart.  If you have tried to work on a friendship and it seems the drifting is happening anyway, you have a couple of options.  Go to your friend and let her know that you miss the closeness (it really could be that life has gotten busy and she didn't realize the distance).  The other option is sometimes painful, but perhaps your friendship has served its purpose and while you can still remain friendly, it may be time for a change.

Maintaining friendships once you are an adult is hard.  If you think your child may be a contributing factor to your changing friendships, just remember, true friends will stick with you and learn how to relate to your new normal.  You have more in common with a different group of people now, so new friendships may be on the horizon.  Treasure ALL your friendships, old and new.

Comin' Up: subjects that seem taboo (and I have so much to say!)

Wednesday - finances

Friday - religion

Monday - politics-special needs style

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

special needs marriage

Do you ever think of how your life should have turned out?  I was just at a women's brunch where two people shared their stories of how what 'should-have-been' never was.  During a creative writing class my senior year in high school, each member of the class crafted a letter to his or her five-year-future self.  My teacher promised to mail these letters to us towards the end of the five years.  I don't remember what the point of the activity was, but if I had to guess, it would be something about goal setting.

Four years later, when I received that letter, it was almost comical to read how I thought things would unfold...I asked myself several "fabulous" questions-Did I get married to the guy I was dating at the time I wrote the letter? (um, definitely no, but I was married to the man of my dreams), How was college in Tennessee? (didn't end up going to Tennessee, stayed in Cincinnati for college), Are you teaching at the college level? (no, I was interpreting for deaf kids at a vocational school).  Here's the best...I told my future self that it was probably time to settle down and start thinking about kids (we already had a 3 year old).  

Is what I thought 'should-have-been' any better than what I had?  It certainly would have taken my life in a different direction, but what I have is pretty sweet.  The grass isn't always greener...I wouldn't trade the life I have for the world.

By the time we had our third child, my husband, Kevin and I had faced small challenges with our first two. Our oldest was diagnosed with a bleeding disorder at ten months, our second child had a rather complicated entry into the world, but those were small potatoes.  Our third child was different.  His potatoes were big.  What I will NEVER forget is our reaction as his parents.  We both reacted very differently, we both thought the other was wrong for the way they reacted.  I started out with the crying and the "why, God, why?" and the "woe is me," he started out with "the doctor is wrong, he doesn't know what he's talking about."  We didn't have much common ground in our reaction; therefore, we didn't support each other very well.

It happened that around that time, we signed up for a class at our church taught on the book The 10 Commandments of Marriage (Young, 2004).  It was taught by a wonderful couple, Tim and Twila, who were several years older than Kevin and I.  They had a child with a physical handicap, and I always remember having such a respect for them-their marriage looked so strong and they didn't seem to be so frazzled when it came to parenting their child with special needs.  I think our pastor may have tipped them off that we were going through a diagnostic process, (that was a closely guarded secret, we didn't want people to know that our children weren't "perfect") because they took a special interest in Kevin and me.  I will never forget when Twila looked me in the eye and told me that the divorce rate among parents of special needs children was double that of the normal population.  Then she gave me the best advice I have ever received: she told me to guard my marriage.

Judy Kirzner is one of the first authors I've seen address the stress parenting a child with special needs puts on a marriage in her book Help! My Grandchild Has ADHD (Kirzner, 2012).  The stress on the marriage is real, but these marriages aren't supported by the doctors working with the child.  Most doctors fail to recommend counseling for the couple when a diagnosis is given.  Only friends and church family who have walked the road of special needs parenting understand the marital strain, and sometimes they don't reach out.  Many times, these special needs marriages suffer in silence.  I can tell you that we have put our children first and our marriage second because we thought that was the best parenting move.  We've made mistakes that have taken a toll on our marriage and it's hard to admit that your marriage is less than perfect.  Plus, it just makes you feel more guilty when you admit the reason your marriage is suffering is your kids and/or how you are parenting them.  

Kirzner identifies the stresses in a special needs marriage as follows:

• Parents might not act as equal partners in raising a (insert special need here) child
• Communication Problems
• Money Strain
• Alienation/Isolation/Disconnection
• Exhaustion
• Depression and Self Esteem Problems
• Intimacy-emotional and sexual

Kind of  sound like the stresses you might encounter in a "regular" marriage...but when you throw in a special needs child(ren), what you get are the issues of a "regular" marriage on crack.  Your problems are intensified; the demands for your attention, time, and money are greater; the number of people who have "been there, done that" fewer.

So, let me tell you what I've learned:

• You and your spouse will react differently, and that's okay.  Find some common ground and support each other the best you can.
• Remember that your thoughts are probably no worse than your spouse's and admitting them out loud to your spouse may make you feel better or bring you closer together.
• When you look at your spouse, remember that you love each other-even if that love feels distant.
• Choose to trust that you both want what is best for your child and your marriage.  Choose to give your spouse the benefit of the doubt in every area of your marriage.
• When you are scared, mad at the world, feeling lonely, etc., don't lash out at your spouse.  He/She is probably the one who can best relate to how you are feeling.
• When (notice I say when) your spouse lashes out at you, try to get to the heart of what's bothering your him/her (probably not the dishes in the sink-maybe it is the feeling of being out of control) and try to ask questions of how you can help.  (If it's a control issue, perhaps you can ask "is there anything I can do to make things feel less out of control?") Then follow through.  That is a sure fire way to let your spouse know you are listening and that you care.
• Be direct and tell your spouse what you need.  (I need to talk and just have you listen, I need to take a shower for the first time in a week, I need to take a nap on one of your days off work, I need to escape one evening a week and go somewhere and read, I need to know more of what goes on when I'm at work, I need you to consult me before implementing a new discipline system, I need you not to hit on me every night at bedtime, I need more sex).  Our spouses aren't mind readers-if you are clear with what you need, and your spouse fulfills that need, what do you have to lose?
• If you would both be comfortable, join a support group where you can share and learn from other couples in the same situation.  If only one of you feels comfortable in a support group setting, one can stay home and watch the kids, and one can go to the meetings.  (this is the important part) Come home and share with your spouse what you learned and how you feel.  Sharing and communication are key, you can both get something out of the experience without both being there.
• Date each other.  I can't tell you how many times we were told to use respite care, get away, go on dates, get out of town for a night or a weekend.  Full disclosure, we didn't do this.  Maybe it would have been helpful, but we were sinking every available dollar (and some unavailable dollars) into therapy and care for our son.  We thought it would be selfish to use money, that could be used for services for our child, for a weekend, or a sitter, or a date night, or (gasp!) marriage counseling!?!
• Find a couple who has been down this path before you that is willing to speak openly.  We were very blessed that Tim and Twila reached out to us.  I don't know that we would have been comfortable doing the reaching.

Maybe we did things that made it harder on our relationship, but we made the choices we made because we thought they were right at the time.

Please don't think that our marriage is perfect-it's not.  It is a work in progress; but one thing we have committed to is to keep working.  We have decided that our marriage needs to come first.  Our love for each other came before our love for our kids-raising kids is something we have decided to do TOGETHER.  Our marriage is a special needs marriage, based on our special needs kids.

Be sure to check back for my next post 'your special needs family'

See the books I mentioned here: 

http://www.amazon.com/10-Commandments-Marriage-Lifelong-Covenant/dp/0802431453

http://www.amazon.com/Help-My-Grandchild-Has-ADHD/dp/1475064985

Advocates don't carry guns

Advocate (noun)-this is a person who pleads the cause or interests of another.
Advocate (verb)-this is the action of pleading or promoting the cause or interests of another.

I think when I say, "I'm just advocating for what my child needs" in a meeting, what they hear is "I have a gun, and I would like you to fill this sack with small, non-sequential bills".  Or perhaps they conjure up an image of Al Pacino playing opposite Keanu Reeves in the 1997 movie "Devil's Advocate".  I'm not sure, but somewhere along the line, the word advocate has gotten a negative connotation.  And just to be clear, I don't carry a weapon-EVER.  I wouldn't want anyone to misunderstand and have the SWAT team take me out before my next IEP meeting.

Whether you view yourself as an advocate or not, if you are asking for anything outside the box, anything not given to every child that breathes, anything special or different, you are an advocate.  Get used to it; and now get ready for the truth...you are probably viewed as a troublemaker, high maintenance, unreasonable; your points are viewed as unfounded, illogical, irrational-no matter how much research you have completed..

When people talk to me about my children, they always say, "you're their best advocate" or "you do such a great job advocating for them".  Ok, well, thanks, but I would like to ask someone to fill in. I didn't apply for THIS job.  Why can't I just be a really good mom?  Why do I have to be the one that is viewed as crazy because I want what's best for my kids?  Why don't parents of "typical" children have to be advocates?  This is especially challenging for me, because I care so much about what people think-I want people to like me-and if they think I'm waving around a gun, demanding cash, and being unreasonable, they won't like me.  They will think I'm crazy.  They will refer to me as "that mom". (oh, you know the one)

I was baptized by fire into the parent side of special needs education.  I thought that if my kid needs help and has a diagnosis, I go to the school when said child is 3 years old and they will help.  (ok, stop laughing, that's really what I thought).  I had done a score of research on my child's diagnosis, I was an expert when it came to my child and what helped and what set him off; but I had never once thought to do research from the parent's perspective on what happens once you get through the doors of the school.

Granted by the time I approached the school with a child of my own, I had been a stay at home mom for 11 years, so some things had changed.  Plus, as an educator myself, I worked with pretty straight forward cases.   Child is deaf, child communicates using sign language, child needs an interpreter, tests in native language (signed to them), extended time (because signing takes time). Never did I hear the question "are they deaf enough to use sign language?"  "Do they qualify to use sign language?"  If they were fluent in sign, a decision their parents made somewhere along the line, they got an IEP.

Sometimes, I wish I had kids with more straight-forward problems. I don't want to hear "wait and see" or "not severe enough to qualify for help" or "falling into a gray area".  It makes my head want to explode.  Why can't you listen to my expert opinion as his parent?  Ok, so we all agree he needs help (yes), we all see that he is behind (or really far ahead) (yes), and we all are saying that he would benefit from help (yes).  So why aren't we helping him?  (because he doesn't QUALIFY).  That's like saying "your kid isn't deaf enough for sign language."

Wow.  hard to argue with that misconstrued logic.  So, in order to be a good advocate, you have to speak their language, know the law, know your child, and have lots of expert opinions to back up whatever you are saying (because you're JUST a parent).  One book that really walked me through my second meeting (since my first went horribly-more about THAT in another post) was From Emotions to Advocacy by Pam and Pete Wright.  You've probably heard WrightsLaw?  Same people.  Here's a link to their website http://www.wrightslaw.com/store/feta.html

So, let me encourage you, you are the best one to speak up for your child.  You are the expert when it comes to what he/she needs.  And you are qualified for this job of advocate.  Sometimes, things will go your way, sometimes they won't.  When then don't-take a moment, regroup, think of a new angle, and start again.  I honestly believe that a red flashing warning light goes off when I call any number in the district from my home phone.  Perhaps I do have the reputation of someone who is waving around a gun asking for the impossible, but at the end of the day, I can look at my kids and tell them that I did everything I could, everything in my power, everything possible to make sure they had a top notch education.  And if I have to be "that mom" to be able to face my kids, I will.

But also let me remind you that you catch more flies with sugar.  You are going to have to work with these same players for much of your child's school career.  You want them on your side.  You don't want to alienate them to a point where they think you are fighting to fight.  Go into a meeting with an agenda.  A list of "wants" if you will.  Also have with you the areas in which you are willing to compromise.  Some things you just can't take no for an answer; some things really would be nice, but not necessary.

I have a relationship with my son's school that is good.  I have good communication with his teacher and intervention specialist, but when we go to have a meeting, they call in the big dogs from central office (I'm not really sure if my gun toting got me the attention or what, but I'll take it).