Tuesday, March 26, 2013

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.

Friday, March 22, 2013

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

Wednesday, March 20, 2013

In search of the money tree

Here, I take some advice I read about "what not to blog about" and throw it out the window.  The advice was very clear-you don't talk about money unless you are a financial blog.  Well, money is a topic that just has to be addressed when you are talking about special needs services.  I think it's a topic that is avoided because it can be uncomfortable.

Before I start talking money, I want you to understand we are not the "haves" nor are we the "Jones's."  We are just an average American family.  Also, let me make it clear that I am not telling you what to do with your money, I'm simply telling you what we did with ours.  I'm hoping by sharing some of the struggles we faced, that you won't feel alone and potentially, you will be alerted to some problems you may want to avoid.


I actually learned a few things researching how you are classified according to wages.  According to U.S. News and World Report, middle class" isn't a thing, you are either "lower middle class" or "upper middle class" (so to be more specific and a bit confusing, we are upper than lower middle class, lower than upper middle class).  To be considered "upper middle class" your wages must be in the top third of wage earners in any given year. In America, that means your income for a family of four would be well over $100,000.  My husband works and I'm a stay at home mom, we are a family of six (not four), and we wouldn't meet that $100,000 income level anyway.  So there you have it-as detailed as I'll get about our income.

When you are in the midst of parenting a child(ren) with special needs, you would think that the last thing you should have to worry about is how much money you are spending.  I would tend to agree; however, financial concerns are a reality.  Therapy can be expensive.  Some tutors charge exorbitant rates. Specialty doctors may not be covered by insurance.  All I know is there isn't a money tree in my back yard, and if you have one in yours, please invite me over.


Parents are generally the first ones to realize that there may be a problem with the development of their child.  Chances are, you won't know exactly what is wrong and you will need to depend on experts to help you Here is some of what we have learned along the way:

When you are first getting a diagnosis:

Spend the money to keep your pediatrician in the loop; make your pediatrician your home base and let him/her coordinate your care.
At the beginning of the diagnostic process, you will spend a lot of time with your primary care doctor.  If your physician isn't listening to you, perhaps you should find a new provider.  You will be spending more time than the average person with  this doctor between well care visits and additional conferences.  The office can potentially bill you for a "level 5" appointment instead of a "level 3."  Your insurance company may or may not like this;  therefore, there is the potential for a bill to come even after you have paid your co-pay.  Primary care doctors know a little about everything, but aren't experts in each special need they will encounter.  They will more than likely recommend testing with other doctors and/or specialists.  Make sure you keep good records of results from each professional you see.  Yes, the pediatrician's office will get a follow-up letter about any outside appointments, but do you know what happens to those letters?  In my experience, they are looked over by an office clerk and if they are non-emergent, they get filed in the chart.  The doctor will look at them during your next visit. This is why you need another visit!  Yes, it's another co-pay and let's not forget the value of your time, but it's worth it.  Does your doctor agree with the diagnosis?  If you didn't receive a diagnosis, where should you go from here? Have you read something, based on your appointment with the specialist that you would like to share with your doctor?  What are your next steps?  All the other specialists you see will be counting on the information you give them and their own evaluation.  Your pediatrician will be the one (aside from you) that will be looking at the big picture of the whole child.


Spend the money on the initial evaluation.  Don't let finances be the reason you fail to do recommended testing.
You may not have a money tree, but you do need to know what's going on with your child.  Listen to your doctor's recommendation on what testing is needed and where to go for that testing.  If you find that place isn't covered by your insurance, call your pediatrician's office back and let them know what IS covered and let them choose from that list.  If you can't afford to pay out of pocket, your doctor's second choice is still better than not knowing.  A diagnosis can come as a relief to parents-but it can also assist you in getting the needed help for your child from state and county agencies or your local school district.

Spend the money on a second opinion  If the diagnosis doesn't seem to fit or you (or your pediatrician) question the validity of test results, seek out a second opinion.  In many special needs cases, there are symptoms that overlap, as well as a subjective component to diagnosing.  Many special needs cases aren't cut and dry.
I will tell you, from first hand experience not to believe everything a doctor says just because he went to medical school.  We went to our local children's hospital for a diagnosis for our son.  It was suggested by our pediatrician, and happily, covered by insurance.  We had heard very mixed reviews as far as people's experiences at this particular center.  When we received the test results, we knew instantly that we would be seeking a second opinion.  You see, we were given parenting advice, told we were not good disciplinarians, and because of that, our son had a behavior problem in addition to his very low IQ.
Having lived with our son for two and half years, we knew he was smart as a whip and because we had never encountered a problem with our other two children, who we had disciplined the same way, we didn't think it was really a parenting problem, either.  His diagnosis didn't sit well with us.  We did some research to find reputable diagnosticians in our area, and we returned to our pediatrician to let him know we would like a second opinion and to seek his advice on which of the doctors on our list he would recommend to do that testing.


Spend the money on suggested follow-up appointments.  "Red flags" need to be watched.  You will not know if those "red flags" are still an issue if you don't attend the follow-up appointments.
We found a great psychologist, who specialized in the diagnosis of autism, to evaluate our son at age three.  She saw many "red flags" for Aspergers, but said she simply wasn't comfortable diagnosing him due to his age.  Our son could grow out of what she was seeing.  He did not fit the diagnostic criteria for classic autism.  At the time, the doctor knew he was enrolled in several therapies to deal with another similar diagnosis, and because they were the same interventions that she would have recommended had she given the diagnosis, she was certain that waiting would be okay.  We were really hoping for a definitive answer, but rather than put a label that was not necessary on our child, we agreed to return in a year.  At age four, the "red flags" were still present; however no diagnosis was given, though she did recommend enrolling him in a group to work on social skills.  We had the same experience when we went in the following year when our son was five.  At age six, he was finally diagnosed with Aspergers.  By the time he received the diagnosis, the doctor was certain.  In my eyes, she actually gained credibility for seeing him many times over the course of many years and not slapping on a diagnosis and moving on.

After you receive a diagnosis:

Find out what is covered by your insurance company-Ask lots of questions.
If therapy is covered (and that's a big 'if') how many visits do you have and what is your copay?  Does your deductible come into play?  What is the difference in coverage between in-network and out-of-network providers?
Our insurance company would only cover speech therapy if your speech issue was due to trauma to the jaw or face and/or malformation of the mouth.  They would not pay one cent for developmental delays, nor would they pay for speech therapy due to a hearing loss.  Occupational therapy was limited to functional (fine motor) with a specialist co-pay ($40 a pop); limit of 16 visits per calendar year.  That wasn't what we needed from occupational therapy...we needed sensory issues addressed way more than fine motor (at age 18 months)!  So, the insurance was basically useless for us.

Look for programs available through your county or state government or your local school district
By the time someone told me to do this, my child was already over the age of three, but Help Me Grow is a great federal program, available in every state for children with delays ages birth-three years old.  At age three, the school district will evaluate, and serve any child that qualifies as a child with special needs.  Our County Board of Developmental Delays has program for children and adults with developmental delays.  Our state has a Bureau for Children with Medical Handicaps with two branches: one for diagnostics and one for treatment.  Any child with a qualifying handicap, who sees a plan doctor, will be covered for diagnostics, but there is an income restriction for treatment.
These are all programs I had heard about, but I never thought any of my children would qualify based on the lack of severity of their needs.  After doing additional research, I learned that there was help available for my children, and while our upper lower middle income did not allow us to qualify for the full extent of each program, there were portions for which we did qualify.

If you can't afford all the recommended treatments, do what you can.  Any intervention will be helpful.  Obviously, the more you can do, the more it will help.  Here is where your pediatrician and other diagnosticians can help you prioritize what would be most beneficial for your child.  We were paying more each month for therapy and tutors than we were on our mortgage, plus the gas to get from place to place.  We had done extensive research about the benefits of early intervention.  We decided that the benefits of getting therapy in place early was worth any sacrifices required of our family.  Our family thought that if we could get at the problem early, it would save us time and money down the road since we were told intensive therapies working together would accelerate the process of each therapy.  We enrolled our son in occupational therapy at age two, but the time he was four, we had six different providers working on the same skill sets, each in their own way.  He did qualify for occupational therapy and speech through our county board of developmental delays, but even with those two things covered, we spent $226,547 on doctors, therapy and interventions between the years of 2006-2009.  We were just talking about if we would have changed anything about what we did when our son was little and the truth is, I don't know.  We did what we honestly believed was the right thing at the time, and we look at how far our son has come as a result of the early intervention, it's hard to argue with the results we see.  It's also hard to argue with the bills we still see each month, which leads me to...

Things we learned the hard way:

You have to have a life outside of therapy
If you take all your available funds and sink them into therapy, you may miss out on some great everyday teachable moments.  We took our "out to eat" budget away, spent our vacation budget, abstained from pool membership, quit the gym, had no cell phone-went down to the absolute basics in order to pay for all the recommended therapies.


If you have to charge treatments or therapies, you can't actually afford them.
Honestly, we thought this was brilliant.  We wanted the therapy now and could pay on it until kingdom come.  The problem is, the more you charge, the more the minimum payment is, which means you have to pay more each month.  Then you don't have as much available as you once did to put toward therapy; therefore, you charge more. It's really a horrible cycle that you would think one with common sense would not fall into, but if that's the case, we don't have common sense.  The thought that something might help you child can easily cloud financial judgement.  Many other parents of special needs children have struggled with this issue of making treatment decisions weighed against money concerns.


Debt is bad.  Dave Ramsey is good.
By the end of 2008, we were over $78, 000 in debt.  That number was comprised of one small car loan of $9,000, debt that we were carrying before we got the bright idea of charging therapy in the amount of $3,000, and $63,000+ in debt and interest racked up for paying out of pocket for the best therapists and tutors that money could buy...and we were still charging-after all, this was our son's future.
The only reason I know the dismal state of our finances at that particular time, is we decided that there had to be a better way...we decided to take a class at church, taught by one of the members who had been through Dave Ramsey's Financial Peace University.  During the second class, she asked us all to bring any credit cards in that we would like to ceremonially shred.  We took a step of faith that day, and with nothing but a mountain of debt, we shredded each and every one of our credit cards.  We have been working the plan since spring of 2009.  We have used our emergency fund about a thousand times and had to go back and build it back up.  We didn't do some of the radical things that Dave Ramsey suggested in his book Total Money Makeover; however, we have slowly but surely been chipping away at our debt.  We will be totally debt free (except for our house) by the end of 2015.  With interest still accumulating, we are paying an average of $15,000 of debt off each year on one salary.  I'm not saying "hey, look at me, I'm wonderful!" it's more like I'm saying, "hey, look at me, I'm a cautionary tale."  Sure, we are choosing to drive older cars, and choosing not to spend our money on certain indulgences, but in a couple of years, we will not have the burden of carrying debt.
If you don't like Dave Ramsey, find someone you do like.  Or if you just need it boiled down for you, here it is...spend less, pay off debt.  However you can make that happen will be great.

Let your doctor know if money is an issue.
Having a child with special needs is EXPENSIVE.  You may not be in a position to afford every cutting edge treatment that there is, but do what you can with what you have.  Your doctor may know of even more programs available to help with the costs of what they are recommending.  They may choose a different course of treatment, or perhaps allow the pharmacist to use a generic when normally they would prefer a certain brand.  Doctors are people, too and they understand there is no money tree in your backyard, either-though I am going to keep looking...

Check back for my next entries in the "what not to blog about" series:
1.  "God, can you choose someone else" where I will share an exert from my friend, Mary Evelyn's blog
2.  "the role of the church" where I talk about church-isms and realistic expectations of a church 
3.  "Jacki Raabe goes to Washington" where I will discuss very polarizing topics such as vaccination, school choice, special diets and more.


Saturday, March 16, 2013

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


Tuesday, March 12, 2013

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:



Thursday, March 7, 2013

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: 

Monday, March 4, 2013

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

Wrightslaw: From Emotions to Advocacy

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).


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.