This gets me every time, too...

So, food allergies.  They stink.  I hate that my kids have to deal with them.  But can I remain humble and say when it comes to food allergies, I'm really smart?  I know more than I ever wanted to...that's for sure.
Safest bet? Eat lunch at lunchtime.  Food belongs in the lunch room.  Kind of why they have one.

Last year, my son was in a food free classroom and maybe that spoiled me a little. I see the "peanut free" signs everywhere in the school-don't know why the peanuts get all the press. A life-threatening food allergy is a life threatening food allergy. Why would you protect a kid who is allergic to one thing, but not one who is allergic to something else? I don't get it, I don't like it. 

So, here we go...our poor children go from 9:05, when they arrive at school all the way until 11:45 before they can eat lunch. 

"We need snack!" declares the teacher. Oh no, we really don't. How many kids eat a mid-morning snack when they are at home during the summer? My guess is not many. 

So when I tell the teacher it's not a good idea to have allergens in the classroom due to many allergies (including my child's) being contact, she says "let's try it and see how it goes". 

Um, let's not! You see, if your little experiment goes poorly, my kid ends up in the hospital, or worse.

But this teacher was a little older and set in her snacky ways. I wanted to ask again to make the classroom food free, but decided to compromise, suggesting that we allow snack, but only single-ingredient whole fruits or vegetables. 

The next question I was met with..."isn't that a little extreme? Not all the kids have food allergies."

Well, my kids isn't allergic to peanuts, but out of respect for the kids who are, I am more than willing to send in peanut-free snacks. Don't you think others parents would be willing to accommodate all the allergies as opposed to just the allergies of one child? 

"But not all kids LIKE fruits and vegetables." Well, if they are hungry, they will eat them. If they choose not to eat fruits and vegetables, they can wait the whole two-and-a-half hours to eat and have their choice of any food in the whole wide world. 

I understand the whole world doesn't revolve around my kid, but he's seven. When I'm not there to look out for him, I can't count on him to think not to touch the table until it has been wiped down. I can't expect a teacher, who is in charge of 25+ kids have the time to have all the kids wash their hands and desks everyday after snack. 

I don't know how strictly this rule is being enforced, but to ensure I'm not a worried momma all day long, I have put this in writing and pretend they are enforcing it strictly. 

Now don't get me wrong, I don't think the whole world should be allergy-friendly because that's just not realistic; however, I do think that if I'm not there to guide and protect him against potential dangers, and the teacher doesn't have time to, I think have an allergen free classroom is reasonable. 

Any experiences with food allergies and your school? Leave your comments below!

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.

do dietary interventions work?

Dietary Intervention: Fact or Fiction?

My pediatrician is a firm believer in "heal the gut, heal the child" and uses lots of dietary interventions as well as supplementation.  Here's what I know:  60-70% of your immune system is located in your Gut Associated Lymphatic Tissue (GALT).  When you are talking auto-immune conditions, wouldn't it make sense to start concentrating here?

Give it time.  If you decide to go the route of dietary intervention, you are talking about long-term health, not a fast fix. Most often, removing gluten from the diet is suggested.  Gluten can stay in your system for four to six weeks and even a small contamination or a single "cheat" can set you back two to four weeks.  In my experience, the first two weeks of the diet feels like the flu.  Tummy trouble, headaches, body aches, and moodiness would not shock me.  It's not a diet that you go on, then wake up one day and feel better.  So if you try it, you have to be willing to stick with it or else you are just wasting your time.

How do you know, Jacki?  Our family has celiac disease running rampant through our intestines, so we didn't decide on a gluten free diet as an intervention for autism, we went gluten free because of long-term health risks such as colon cancer.  My husband was the first to be diagnosed nearly nine years ago.  Three years later, my new pediatrician looked at me and asked why I hadn't considered the fact that our children likely also had the disease.  I decided to go gluten free with our youngest two for the first month (fully intending on returning to my glutenous ways after they were settled in on the diet).  When I reintroduced gluten, I had horrible side effects and felt so lousy.  I realized that even though it was hard, gluten free would be our new lifestyle.  Since then, another of our sons decided, at age eight, that when he ate certain snacks, he felt really bad and wanted to be strict with a gluten free diet as well.  Five out of the six in our house follow a strict gluten free diet. 

Once gluten was removed from our youngest child's diet, more allergies came to the surface as well.  We did an elimination diet again as well as blood and scratch testing and an upper- and lower-endoscopy.   The tests suggested that he was allergic to the sugar in milk (lactose) but not the protein (casein).  Our doctor said after the elimination period, we could reintroduce foods once at a time in small doses.  Instead, we allowed him to reintroduce dairy at a preschool ice cream party.  He passed out, threw up, and got a visit from some friendly EMTs with epinephrine due to what we now know is an anaphylactic allergy to dairy.  So not only is he on a gluten free diet, but he is casein- and soy-free as well.  

I know the diet.  I know it's hard.  I don't know how well it works as an intervention, but I do know that it takes dedication.  If we weren't on the diet for health reasons, I can promise you that we would have tried it because it never hurts to try.  It does hurt to abandon early.

As you embark on your dietary intervention, feel free to email me.  I am more than willing to share recipe ideas!

More than a diagnosis

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

what do you think about school choice?

Public School or Private School: That is the Question

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

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

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


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

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

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

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

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

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

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

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?

food for thought

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

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

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

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

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

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

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

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

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

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.

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

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.

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