Wednesday, June 26, 2013

The Perfume of Hope

"For there is hope for a tree...
Though its roots grow old in the earth,
and its stump die in the soil,
yet at the scent of water it will bud
and put out branches like a young plant."
Job 14: 7-9

Today I took my oldest son to an evaluation.  He was diagnosed as a baby with DiGeorge Syndrome or 22q.  When he was about two years old, his favorite things to do were turning lights on and off and opening and closing doors.  He also preferred to play by himself rather than with the other kids.  That is somewhat typical at that age, however he didn't really even express an interest at all in other kids.  I had wondered back then if maybe he fell somewhere on the autism spectrum.  I asked his early intervention teacher at the time what she thought and while she wasn't allowed to say a whole lot since she was not a doctor, she confirmed that she had noticed the same things that I had and thought it was a definite possibility.

This made me very anxious.  She was supposed to say, "That's normal.  I see it all the time.  I wouldn't be too concerned about it."  She wasn't supposed to agree with me!  It had only been about a year and a half since I had received the news of the first diagnosis.  I wasn't sure if I could handle another.  I cried a few times about it.  I told myself that he was already getting all of the services he needed through early intervention programs, special schools, and then as he got older, the public school system which includes speech, occupational, and physical therapy.  I looked into an evaluation a few more times since that first conversation but never followed through.

As he got older, his actions changed.  After a while he didn't open and close doors anymore.  He had stopped constantly turning the lights on and off.  But there were other things.  Year after year, he continued to prefer to play by himself rather than with other kids.  However, he interacted normally with his brother and me as well as most adults.  I had read that many autistic kids are aloof even towards family.  My son is not like that.  He also had a velopharyngeal insufficiency which basically means he lacked the mechanics in his palate to make intelligible speech, which may contribute to poor social skills since it is more difficult for him to communicate.  Two years ago he had surgery to correct the issue which has done wonders for his speech.  While it is still difficult to understand him, especially for other kids, he has come so far.  Strangers can now understand probably 60% of what he says, whereas before, it was closer to 0%.  This past year in school he has also made some small strides with his social skills.  But it's still very obvious that he is different than the other kids.

In addition to these things, he also has several different fixations and repeats the same phrases and questions over and over and over... and over and over and over... and over and over and over... you can imagine a 10 hour road trip with him.  It can get quite exhausting.  At one time, his obsession was his schedule.  Every day he would remind me that he goes to P.E. at 9:20am, lunch from 11:18am until 11:38am, then to speech, then... wherever.  When he went to art class, while I'm certain the other kids were drawing pictures, his papers were full of schedules.  He still loves his schedules, but after that, he was obsessed with the time.  "What time is it now, mommy?"  he would ask all the time, even if he was standing right in front of the clock.  He wanted to hear me say it.  When the time changed, he wanted to hear me say it again.  "What time is it now, mommy?"  Then it was elevators.  Then math.  Then elevators again.  He is currently still obsessed with elevators and also the Weather Channel and daily forecast.

He had a lot of the characteristics of autism.  I went to a 22q conference last summer and they talked there about how common a diagnosis of autism is with 22q kids.  I looked over the six areas they have to meet certain criteria.  I was certain he either met or was very close to meeting the criteria for diagnosis.  After I returned from the conference, I talked to his pediatrician who referred me to another office that would be able to do an evaluation.  I called and got the process started.... but then never followed up.  He was getting all the services he needed at school by a wonderful team of therapists.  What difference would it make having an official diagnosis?  Really, I was just afraid.

Last November, after being away from home for a week, my son came home noticeably different.  He had developed these very concerning tics where his whole body would just jerk uncontrollably from time to time. It really bothered me.  He'd had other smaller tics from time to time but never anything like that.  I wasn't sure what to do.  I mentioned it to the pediatrician and I don't remember exactly what he said about it, but he wasn't very helpful.  The tics decreased somewhat and went from the full body jerking, to just his head jerking and then he was making sounds with his lips.  I scheduled a meeting with his teacher and therapists at school since they have always been absolutely wonderful with him and very knowledgeable.  We had a long discussion about everything.  The physical therapist had a son who has Tourette Syndrome and recommended a pediatric neuropsychiatrist that she has taken her son to who would do a full evaluation on my son to help me try and figure out what was going on with him.

At this point, I was ready.  I called the office and found out that they only take patients with a certain level of need and my son would have to be accepted into the practice.  As I described what was going on, it didn't take them long to accept him for evaluation.  It took about six months or so to actually get him in to see the team of doctors there.... which brings me back to today.

Today I took my oldest son to an evaluation.

I mentioned all of my concerns.  They asked me a lot of questions.  None of my answers took them by surprise.  They even knew all about 22q, which was just awesome because most people, even doctors do not know what it is, which can be very frustrating for me as a parent.  When I would mention one thing that my son was doing, they would ask, "does he do this other thing, too?" because they deal with this sort of thing all the time.  It was a breath of fresh air, honestly.  I realized very quickly into it that I had found someone who could help my son... and me as his mom.

When the evaluation was over, the doctor came back with a diagnosis of autism spectrum disorder and also another sensory dysfunction disorder.  And it wasn't as scary as I had originally thought.  They laid out a plan of treatment, which is quite extensive, and gave me some phone numbers for a couple of other specialists they recommended seeing for therapy, etc.  They qualified me for a free study program for him that deals with anxiety and helping him understand it, what triggers it, how to cope with it, and so forth, all in a play-like atmosphere.  He really needs that.

Tonight as I was thinking about everything, the path forward still seems so overwhelming.  But at the same time, there is peace and hope.  It reminded me of a passage from one of my very favorite books, The Scent of Water by Naomi Zacharias.  She wrote,

When your leaves have fallen in crumbles, no longer providing shade for others or yourself; when there are no blooms on your branches; when you are stripped of the branches themselves that once gave perceived heavenly height and balance, when you are but a stump that has died in the ground, you do little more than take up space.  You don't bring fruit, beauty, or canopy but are something to stumble over or stub a toe on, something to be altogether ignored.  Life has essentially abandoned you.

Unless, until, there is water.  No... the promise is that at even the scent of water, our roots, like that of a tree, will awaken and extend themselves - at the very hint of its refreshment and sustenance.  Ah, the perfume of hope that breathes life into the weary and wounded.

I experienced that scent of water today.  While my son and I were discussing the doctor's office elevator during the entire ride home today, I realized... nothing has changed about him.  He has a new diagnosis but he's still my same, silly little boy who loves elevators and weather.  There's no need to be afraid.  Today is a starting off point to help him even more going forward into the future.

Ah, the perfume of hope that breathes life into the weary and wounded.

Tuesday, June 25, 2013

Overwhelmed

"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God."  2 Corinthians 1:4

I am overwhelmed.  

Really overwhelmed.

It's been building up for a while but I guess it really started to take a toll on me around April after my company signed the largest contract we have ever signed in our part of the business.  We expanded to include a second floor and grew our local workforce from about 175 employees, to about 325 employees.  It's a very exciting time when you work for a business that is experiencing such tremendous growth when many other companies are laying off workers in today's economy.

Because of this rapid growth and the race to fully staff the local operations by launch date at the beginning of May, I also got to try my hand in some new areas such as interviewing potential employee candidates.  I have to tell you, it's not my favorite thing to do.  I would prefer to sit on the opposite side of a two-way mirror observing someone else interview them while I took note of their non-verbal cues.  I would really enjoy that, actually.  Being the interviewer?  Not so much.  I prefer to work behind the scenes and get all nervous when put in front of people to "perform."  But still, it was a good experience for me.

At work I'm in charge of employee timekeeping as well as recognition, client visits, and our company wellness program.  Imagine how that changes when you almost double in the number of employees, yet don't bring on an additional me to help the existing me.  I am pushing for that, but due to various logistical roadblocks, so far it hasn't happened yet.  We've also had about a bazillion site visits from different clients almost weekly which has also added to my work load.

About a month ago, I became so stressed out and overwhelmed about the amount of work I had to do and the inability to get caught up that I became physically sick for three days.  I never use sick days for myself.  I never get sick.  But I was just so worn down.  There were a few days in there where I also felt like I was having a nervous break down from the stress.

***

A few months ago, I noticed that my oldest son seemed to favor using his left eye over his right.  His teacher last year had mentioned to me that he used to turn his head during story time and we thought that it was his hearing.  So I had him tested.  His hearing was normal, sort of.  The mechanics were normal but he does have some sensory issues related to sounds.  His teacher then mentioned that it may be his vision instead.  I don't know why I didn't make an appointment with the opthomologist right away.  I finally ended up making the appointment this past April when he was struggling with his reading.  It turned out that his vision in his right eye was 20/100!  Because he is 9, the doctor said he was close to the age where it would be difficult to make any changes but that he wanted to try patching to see if it would help.  So we have patched the good eye for two hours a day for the past two months in hopes of seeing some progress.  I had terrible mom guilt over waiting so long to take him in for a check up.  (I should add that he had a follow-up appointment yesterday and his vision has improved to 20/50 in that eye due to the patching - praise God).

Around the same time, it was time for his annual IEP meeting at school.  I love his school and his therapists are all fabulous.  He has come a long way over the past few years.  We talked about a lot of different things at the meeting this year.  Around Thanksgiving last year, he developed some pretty bothersome tics.  It was almost as if his whole body would just go into convulsions.  Then he started doing this popping sound thing with his mouth.  Right now those ones have kind of calmed down but from time to time, I notice him doing different, milder things.  He's had tics from time to time for a long time and they get more pronounced when he is under stress.  He also has some sensory issues, especially related to sounds.  He's afraid of pretty much everything and this school year we've started to deal with some teasing from the other kids and mean comments about him being different.

As the therapists and I talked about all of the different things going on with him, his physical therapist recommended a place associated with the local children's hospital that would be able to conduct a full evaluation for him to help them know the best way to proceed with him in therapy next school year.  We have an appointment there tomorrow morning.  It took me about 6 months to get him scheduled because he first had to be accepted by the doctor as a patient and then be placed on a waiting list.  When I asked them if they accepted my insurance, they told me that they did.  Just yesterday they called me (two days before his appointment) to inform me that the visit is considered under the mental health part of the plan, which my insurance company sends out to a third party.  They don't take that third party insurance.  My initial visit will cost $900.  I was able to talk them into letting me pay just $500 at the appointment and making payments on the rest.  That's still $500.  That's a lot of money when you find out only two days beforehand and have not made previous arrangements for.

***

I've somewhat mentioned before that I've been having some issues with child support or the lack thereof.  I've had to hire an attorney to try to get it enforced.  The case has been dragged out due to various issues and I've paid him about $4,000 so far just in legal fees due to the fact that I am not getting paid and need money to support the children.  I hope I don't end up having to pay any more than that in fees but it's hard to say.  I think I need to go to law school so that I can charge people $50 to fax them a one page document.

***

My oldest son fell off the couch and broke his collar bone about four weeks ago.  I'm still waiting to get the hospital bill for that.

***

My five year old desperately wants me to play with him when we get home.  He is all boy.  The kind that likes to nose dive off the couch and jump in puddles.  It's amazing that he isn't the one with the broken collar bone.  It takes every ounce of energy I have to get down and play when I am completely exhausted from a long day and life in general.  I love it when he wants to read a book or do a puzzle or something calm rather than jumping and playing because those things are so much easier to do sometimes.  I don't want to be that mom who is too tired to play with her kids.  Sometimes I am.  That produces more mommy guilt.

***

On my way home from work yesterday, I was rear ended while sitting in traffic.  Fortunately, my car only had a small dent from the accident, but it did jerk me forward some so today I went to the chiropractor for x-rays and treatment.  I'll have to meet my deductible on that.  I'm really hoping that the other driver's insurance will end up reimbursing me for that deductible amount.  It's just a horrible time financially right now to be dealing with that.

***

We have had tornado warnings for the past two days and I'm considering right now whether or not I need to wake the kids up and frighten them in order to take shelter in the closet.

***

Yes, I am feeling very overwhelmed.

I've noticed from time to time that people who are going through difficult or overwhelming times will talk of a sort of disillusionment with their circumstances because they had been praying for things to work out in a different way.  Because they did not, does that mean that God doesn't hear?  That he hasn't answered?  And when something really great happens, the Facebook status is "God answered prayer!"  Is that only true if things worked out the way you wanted them to?

Tonight I read blog of a friend of mine who is ordered to bed rest for the remainder of her pregnancy.  While she is thrilled to be expecting her second child after some difficult circumstances, it's been a challenge for her and also somewhat frightening as it would be very early if the baby were to come now and the outcome uncertain.  Yet I was encouraged by reading her writing.  It just made me think of how many other women in similar situations may be encouraged by reading her story and maybe that is a gem in the midst of her struggle.

It reminded me to take a step back from such a close range view of my own circumstances.  They are certainly overwhelming.  But I don't want to miss the bigger picture, either.  I don't know what that is yet.  I'm reminded that "Blessed are those who mourn, for they shall be comforted."  Matthew 5:4

God does answer prayer even in the midst of difficult circumstances.  Maybe it's not in the package we are expecting.  Sometimes it's through the comfort he brings even in the midst of the storm.  Tonight's comfort came in a call from my pastor's wife.  She didn't know what I was going through, she just called to see how my week was going and offer encouragement.  But God knew I needed that tonight.  And through her, He brought me comfort.  Through my friend sharing her story in a blog, He brought me encouragement.  And a reminder to not lose sight of Him.

Thank you, Lord.

Saturday, June 1, 2013

Those Were the Days

Yesterday as I was driving home listening to some music I had downloaded on ITunes, it got me to thinking about the good ol' days... you know... the 80s.  I love the 80s.  I remember when there were songs I really liked.  I didn't have the money to go out and buy all of the tapes so I would sit in my room with my boom box tuned to my favorite radio station just waiting for all of my favorite songs to come on so I could press RECORD and save it on my own blank tape.  Those were the days.

This morning as my kids and I were eating our Life cereal for breakfast, they entertained themselves with the neighborhood fun picture on the back of the box.  They don't have fun things on the back of cereal boxes as much as they used to anymore.  Or maybe I just haven't noticed since I don't buy the sugary "kid" cereals.  But I was telling them this morning that when I was a kid, there used to be a toy hidden down inside the cereal boxes.  My sister and I always wanted to be the first one to open the box of cereal to get to the hidden treasure buried inside.  I wonder when they started doing away with those?  Those were the days.

I remember growing up watching shows like The Facts of Life, Alf, Cosby, Family Ties, Growing Pains and Perfect Strangers.  And I would have given anything to have been a contestant on Double Dare.  I'm feeling a real need to go watch Nick at Nite right now.  Those "old" shows that would air at night used to be Patty Duke, Donna Reed, and Leave it to Beaver when I was a kid.  My favorite childhood shows are the old shows you see now.  I've even seen re-runs of Friends on Nick at Nite which is just plain wrong!  Man, they just don't make TV like they used to anymore.  In those days, we even used to watch the entire show because if you wanted to watch something different, you had to actually get off the couch and walk up to the television if you wanted to change it to something else.  Those were the days.

I remember growing up on Hibbard Street.  Mr. and Mrs. Brown lived next door to us and Mrs. Brown always had fresh flowers she had grown in her garden that she would give to all of the neighborhood kids.  Sara and Ethan lived a few houses down.  Marty lived across the street.  Angie and Kristen lived just a couple of streets over on Eaton Street.  Angie and I would walk home from second grade and our moms would meet us half way.  I wouldn't let my kids do that these days.  And they don't know the kids who live down the street and especially not a few streets over.  Life is so different these days.

I don't know what has gotten me so nostalgic over the past few days.  It seems like so long ago, yet in my mind, it was like it was yesterday.  Sure there were probably world problems back then and life probably wasn't all sunshine and daisies everyday, but it sure seemed like it when you were a kid.  I miss that.  The world seems like it has moved forward at warp speed.  Maybe it's just because I'm getting older.  Like when I go back to visit my old childhood home, it always looks so much smaller than it seemed back then.  

The technological advancements in such a short period of time blow my mind.  I mean, how did we ever get through school and even college without Google?  I bought my first cell phone in 2001.  That's just twelve years ago.  And look where cell phones are today in such a short period of time?  Mine still flips open because I'm stuck in the Zach Morris days.  Twelve years from now I'll probably be laughing that I said that because cell phones in general will be so old school.

Honestly, twelve years from now, I hope we are not here because Christ has come back to rapture His church.  With all that is happening in the world these days with Israel, technology, the rise of self exaltation, etc, it certainly seems like it could be soon.  Even physically, it seems that the world is dying just as our bodies waste away and die, with all of these intense storms, earthquakes and the likes.  I'm not a scholar in that area by any means but I'm absolutely glad that this is the closest to Hell that we will ever get as Christians.

Man, I loved the good ol' days.  But I am super excited for the days to come as we spend eternity in Heaven  and no longer have to endure all of the hardships of these modern times.  Those will be the days.