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Christmas morning gift

A quick post about Christmas morning.  After a rough night and another MB-12 shot, I was not really anxious for Christmas morning.  We were visiting my family in another state; so the sensory issues were already high.

About 4:30am, Kyler lie awake in his crib (we were sharing a bedroom with him).  He was cooing and happy.  I was panicked because I knew it was early; however, I thought it was more like 6am.  Then, I heard my nephews in the other room.  They must be up checking out what Santa left for them.   I decided to peek out our bedroom door and sure enough, the boys were flinging wrapping paper around and enjoying the Christmas morning moments.  I decided to go ahead and grab Kyler and take him into the other room.

As you know, transitions, odd timings, and off schedules can cause great chaos in the life of an autistic child much less a completely new environment.  I expected crying.  To my surprise, my beautiful little boy became a “normal” little 1.5 year old for about one hour of our Christmas morning.  It was pure joy (and utter shock).  He smiled with a big gummy and teethy grin at everyone who was around.  He looked everyone in the eye.  He babbled and clapped and was just so happy.  I forgot, for all of a few minutes, that there was anything atypical about him.  God, it was nice.  He watched the boys play with their toys.  He chased the cats.   He hugged me.  He looked me straight in the eye and showed me his big pearly whites.  Bliss.  It was short and sweet but it was a very meaningful Christmas gift for me.

Autism- One step forward THREE steps BACK!

So, the one part of this puzzle that I’m stuggling to get through is the constant progression then regression pattern.  It’s just not part of my make-up to allow something else to be in control of the situation.  I need to see results NOW!  I think that if there was just a speck of light at the end of the tunnel somewhat consistently, I’d be able to handle this much better.  But, the constant roller coaster ride of emotions if pretty tough.  The highs are SO HIGH but the lows are SO LOW.  To go from one extreme to the other with such force and energy is just exhausting.

In case you haven’t figured it out, we’re having a low right now…ok, not just now but for the past two weeks.  So, you know the routine,  get through the day (as scattered as it and you may be), then at any resting (I mean alone) time, research, research, and research some more.  My head is killing me from trying to seek out any similar scenario that might provide just the slightest hint to what the heck is going on with Kyler and of course, with the hope that there will be some burst of improvement following the regression.

It started after our last DAN! appt that I wrote about.  More supplements were added at once and the anti-fungal rotation began.  STUPID, STUPID, STUPID!  Do yourself a favor and learn from my mistakes…do not, I repeat, do not start your child on multiple supplements at once at full dosages if you can at all help it!   No one told me that and we all paid the price.  The regression began.

Then, the good behavior picked back up (you know, the one step forward kind of day).  I also eliminated the new supps and started over one at a time.  I really didn’t see GREAT improvements and we were still worse than where we started.  Then, then it was rotation time (anti-fungal that is).  Two terrible days and then THREE GOOD DAYS.  And, are you ready for this??…..wait for it…..I heard “momma” for the first time.  Yes, that’s right, he said it.  Did he mean it?  Probably not.  At this point, we’ll take sounds that contain consonants.  Three days in a row, I heard that beautiful sound.  GOD, take me back to that moment!  Then, it was gone.  Everything was gone again.  Therapy took a huge turn for the worse.  Tantrums came on full speed.  WTH?

So, desperate for results, we went ahead and started the MB-12 shots.  We had really been excited to start them hoping for a verbal miracle.  And due to the regression we were witnessing, we said, “why not now?”.  Well, as of yet, no results to report.  I know, I’m full of joy.  HOWEVER, there may be a culprit.  Three shots in, it was time again for rotation….So, grapefruit seed extract, here we come…or back out it comes!!!!!!!!  I mean projectile vomit all day long from my poor child.  This unfortunately was probably our fault.  Again, we were told one capsule but not to start with say a quarter of a dose.  We, again, learned the hardway.

So, we decided to buy the GSE drops and only do one drop twice/day.  Oh have the diapers smelled like a bakery!!!!!!!!!  Kyler seems so ill but do I continue in case this is the “die-off” period?   Or, is there something worse going on? 

It’s so hard to know what to do with these kids!  The missing puzzle piece to one is unlikely to be the same in another.   The long list of helpful supplements for one is unlikely to be identical for another.   So, here I am, taking a break from my extensive research and blogging my thoughts. 

We’re going to stick this one out for at least a week but so help me if I don’t see results after that!

Supplemental halt!

Just want to comment on the previous week or so.  We had SEVERE regressions from Kyler after starting him on the additional supplements.  So frustrating and frightening!  Loss of babbling, loss of coordination, loss of the little receptive language he had acquired.  I contacted his DAN! doctor who said we should back off the supplements and introduce them one at a time.  I wish they had told us this from the beginning.  My gut instinct says that the enzymes had something to do with it because we were giving him 3/day (one at each meal).  The research that I’ve since found says to start with 1/4 capsule and gradually increase.  This is a 1 1/2 year old so obviously, we should’ve started slower but no one told us that. 

Anyway, so we backed off the supplements and only added the zinc and the probiotic (and the rotating anti-fungal).  He has started to “come back” but no babbling…. UGH.  We did that for 4 days and today I added the P5P back in (B6 plus Magnesium).  Supposedly, this one is very beneficial.  Here’s to more babbling…PLEASE!!!!!!

The “A” word- Autism

Well, it has been a very long time since I’ve posted.  Many things have come to surface since my last post.  First, I’ve had lots of family in town over the past month so I’ve been busy cleaning, entertaining, etc.  Second, Kyler didn’t improve for awhile… in fact, he took a turn for the worst.  I hesitated on posting because I just didn’t want to post the negative.  It’s time to get to writing again so here goes:

We started the gluten and casein free diet about 5 weeks ago and have been on fish oil for 7 weeks.  We were thrilled with the initial improvement with Kyler from the fish oil.  The GFCF diet was supposed to help because I’ve known in my heart that he has digestive issues.  Supposedly, this diet would help him because he wouldn’t have to breakdown the proteins in the milk and wheat products.  Unfortunately, we have not really seen too many gains from it.  The biggest gain is that I’ve been forced to use my kitchen and actually cook things.  OMG.  I don’t like NON-convenient things!

Kyler soon regressed and lost all babbling sounds and Dada.  He withdrew from us, stopped clapping on cue, dancing on cue, giving “high fives”, and really stopped responding to his name.  It was extremely frustrating.  I heard that he might experience a regression due to withdrawals from the food but after a month with no improvement…I was quite disappointed.

The more I researched.  The more I realized.  Kyler has a problem.  This isn’t just a speech delay as I had so prayed.  His signs of autism are so apparent.  God, WHY?  I’ve researched so much that I feel like an expert although I’m far from one.  There is hope.  Lots of hope and encouragement.  Children ARE recovering from autism.  Please let my child be one of those children.  I had already found information regarding a DAN! doctor (Defeat Autism Now!).  And, there happens to be one in my city- a well-known board certified surgeon.  I decided that we needed to go see this doctor to start healing my child.  No one had diagnosed him but my heart knows the truth.  I still don’t really let it sink in.  Everything just started to fit together.  Pictures from the past year show signs of things that I just ignored or didn’t know any better.  His baby book points out milestones that were met early and then lost …. not coincidentally around the time after his vaccinations.

The biggest turning point was after the last set of vaccines.  He did NOT receive the MMR.  I was already paranoid at this point so I thought I was saving him by not allowing him to receive it.  Instead, he was injected with 5 other shots including one that was a combo AND a TB screen.  The very next day, Kyler ran a 104 fever, was lethargic and couldn’t not stand nor crawl.  Quite scary.  Because he had always reacted poorly to shots I did not take him to the ER.  I consulted his pediatrician who assured me …. he’s fine.  It was after this time that Kyler lost all of the gained skills.  He would ocassionally pick up a skill here or there but lose it again. 

At any rate, so here we are…facing the “A” word.  He’s been referred to a neurologist and GI doctor but I’m procrastinating for fear of diagnosis and inappropriate medication.  I’m relying on his DAN! doctor for now although I will be taking him to the neurologist.  The DAN! doctor prescribed 3 supplements to start: Cod Liver Oil, L-Glutamine (amino acid), S Boulardi (anti-fungal/probiotic).  Be it coincidence or the GFCF diet finally kicking in, we started to get DaDa again from him.  You may recall from previous posts that the last time his started on fish oil, he bagan babbling again…soon after lost it again. 

This time, we are getting more babbling, pointing, and shorter tantrums.  No miracles but small steps…we’ll take them! 

He’s also starting in ABA therapy.  This intense therapy that has to be ran and managed by me is going to be very interesting.  I hope it helps.  So far, he has learned to “sit down” if he wants me to read a book to him.  For any other parent of a 15 month old, this may seem small.  To us, it is HUGE.  I feel like I’m training a dog but supposedly, it’s proven to work.

We’ll continue with the speech and ABA therapy for the next month.  Then, we’ll get the results back from the tests taken with the DAN! doctor (food allergies, toxins, bacteria, etc). I’m hoping for answers.  OH, JUST AS IMPORTANT…just from the prick of Kyler’s finger, here is what the doctor was able to show us, via a microscope, of Drew’s blood:

• Evidence of a vaccine injury- an environmental infection
• Leaky Gut Syndrome
• Poor nutrition
• Overworked spleen
• His body is absorbing the wrong things and digesting the good things
• Allergies of some sort
• Bad/Overgrowth of yeast
• Heavy metal toxins

Seriously, we were shown these occurences in his blood cells- AMAZING.  We should be able to heal his leaky gut and pray that he will begin to digest properly and maintain nutrients.  Perhaps, communication skills will improve at that time.  As far as the infection…I’m not sure as to how that will be helped.

Well, I know this post is kind of jumbled but I wanted to give an update since it has been so long.

BTW- thanks for the encouragement and comments.  I appreciate it!

First Day at Mother’s Day Out for my Difficult Toddler

Well, we did it.  Survived, that is…  sort of.  Let me just say that I did NOT receive a phone call to come and get him early.  That’s success for me!!! 

To be as organized as I usually am, I had the hardest time getting us out the door this morning.  I labeled everything last night and had his bag ready to go.  I went over his morning routine in my head countless times trying to figure out the best way to keep him happy until we arrived at school.  Nevertheless, we were five minutes late on our first day (not too bad).  He woke up in a decent mood, took his fish oil with no hesitation (whole different post), and stayed happy the entire car ride there.  As we approached his classroom, he actually let out a little babble/laugh…which for us is a VERY BIG DEAL. 

His teacher met me at the door and explained that they had decided to split his class in two.  She showed me his new classroom and introduced me to his new teacher.  Ok, I can handle it…I mean, when she met me at the door, I just thought for sure that they were already kicking him out.    There were four or five other little ones already in the classroom and all seemed very happy.  I set Kyler down and got on the floor with him to help him adjust.  Oh no.  For absolutely no reason, he just starts crying.  GREAT.  I was showing him the toys and the other children (he usually loves other kids).  Nope, not working.  Thankfully, one of the teacher’s aides was able to get his attention and stop the crying.  Whew.  Ok, time to sneak out!  Before sneaking out, I explained to his new teacher that Kyler is still taking 2 naps.  If he doesn’t get the morning nap, he will get very fussy!!!  I also had left him a cup of juice, milk, and lunch.  She seemed to understand and encouraged me to sneak away..and I did. 

Ok, deep breath.  I did it.  He’s there and he’ll be fine.  I decided to just go hang out at Target for an hour so that if they did call me when he gets tired and irritable, I’d be right around the corner.  It was approaching 11am and they still hadn’t called.  So, I went home, paid bills, straightened the house, ate lunch and headed back to get him.  It was so nice to have the time BY MYSELF to get stuff accomplished.  I almost didn’t know what to do with myself!

I returned to the school a little early and decided to go ahead and pick him up.  I brought my camera (the battery had been dead earlier) to take some “first day of school” pictures.  High hopes.  This time, I didn’t hear my child screaming….could it be?  Did he survive?  Is he NOT crying???  I peaked through the window on the door and saw that the teacher was changing his diaper.  Obviously, he wasn’t going to be happy during that process but he wasn’t screaming.  A few of the other children were sleeping in cribs, one was sitting quietly in his crib, one playing quietly on the floor, and one rocking herself in a rocking chair.  Seemed fairly peaceful.

When I went in, I realized that Kyler was crying so I rushed to get him.  I asked the teacher how he had been.  Her response….”well, to be honest, he cried almost the entire time.”  UGH!!!!!  She told me that they didn’t give him the morning nap or the juice that I had provided.  (I know that’s why he was so upset.)  They were able to get him to sleep for a few minutes though after lunch.  I felt terrible for Kyler and the teacher.  She must have been exhausted- I would know.  Then the Director stopped in and informed me that, “he had a rough time today.”  Really?  I mean, was my child the only one in the entire school to be so irritable and fussy?  Probably.

Poor little guy was so happy to be back at home with me.  I have such mixed emotions.  The school is good and I feel comfortable with them.  The problem is the nap situation.  I do not want to lose that morning nap and he needs it.  They said that they would try to put him down for the morning nap next time (he only goes one day a week).  I just selfishly really need that time to myself.  Having one day a week for 6 hours is like my new heaven!  I think he’s just going to have to stick it out again and I’ll pray he does better next time.

Meet the Teacher Day with my Difficult Toddler

To manage my sanity, I decided to enroll Kyler in a Mother’s Day Out program one day a week.  We recently moved to Texas from Florida so I don’t have any family or friends to help out if I need to go to the doctor or run errands.  Baby Daddy and I thought that the Mother’s Day Out program would be a good way for Kyler to interact with other children and for me to get a little relief.

Today was Meet the Teacher Day at Kyler’s new school.  We were all prepared with our “impress the teacher” outfits.   I was on time, my child looked adorable, and we were ready to meet the teachers…  I’m always very anxious during outings with Kyler because he is so temperamental.  I don’t know why but he is always the one to not want to be in a stroller, or not want to be held, or not want to be set down.  It’s so embarrassing but I am persistant to try over and over to get him out and about hoping that one day he’ll behave in public. 

When we found his classroom, there were already several other children and parents standing around talking to the teachers.  My anxiety level was increasing as Kyler started to fuss…I cautiously took him out of his stroller and encouraged him to play on the floor with the other children and toys.  Whew, he did it.  Ok, now it’s time to meet his teachers.  I told myself that I would NOT tell his teachers about his presumed speech delay because I worried about them labeling him.  My big mouth, however, spouted it out immediately as I introduced myself to one of the nice ladies.  Much to my surprise, she comforted me by explaining that her daughter had a speech delay as a child and that she was very aware of how to work with children in need.  I was relieved…until I read that she is the teacher on the two days that Kyler is NOT in school.  GREAT, on to meeting the other teachers….

Meanwhile, Kyler was playing fairly well.  He was noisier than the other children with his grunts and “Aaahh” sounds but having fun.  So, the teachers informed us that there was a parent meeting in the auditorium and that we could leave our children in the classrooms with them if we felt comfortable.  Kyler appeared to be having a good time so I snuck out.  Twenty mintues later, after the meeting ended, I was headed down the hall to pick up my child.  I was feeling great…accomplished even.  We had successfully handled a day out in public and having him at Mother’s Day Out was going to be a good thing…….

Oh no.  I hear screaming.  Recognizable screaming.  Children’s screams sound similar – right?  Some poor child is not happy.  The closer I was to Kyler’s room the more sure I was that the scream I heard belonged to my son.  Indeed it did.  He was fine when I left him; I know he was.  Surely, she’s going to tell me that he was fine the entire time until just now.  NOPE.  I rescued the poor teacher and took Kyler into my arms.  He was crying so hard that he could barely breathe.    I apologized profusely to the teacher.  She said that he was fine for a few minutes after I left and then just lost it and they were never able to console him.  She said, “Oh, don’t worry about it.  It will take them a few times to adjust.  If we can’t handle him and he continues to cry, we’ll call you.”

Why do I have this feeling that the $200 non-refundable registration fee is money flushed down the toilet???

As soon as I got him out of his classroom, I realized that I had forgotten to give him his juice.  If you know anything about me, it is that I am scheduled.  Predictable.  This child of mine was as scheduled as can be and needs his juice or other meal right on time.  How could I’ve forgotten to leave them with his juice??  I hurriedly found it in his bag and gave it to him.  And he was calm……….

Well, one day down but many more to come.  I’ll write about his first real day of school which is not until next Wednesday.

Depressed yet devoted

Everyone wants their child to succeed.  How to deal with an imperfection??  My 14 month old is not talking, barely babbling, and usually only grunts.  According to most statistics, he is delayed in his speech.  With all of the autism controversy, it’s hard not to wonder…is Kyler autistic??  Granted, we are early on in this speech delay but it is still scary.  Not to mention, it is so frustrating.  We are working with a speech therapist and I’m so anxious to get results.  It is so hard to look at my perfect baby and know that there is a possibility that he may not be so perfect.  God, how I love him.  But, God, how I want him to communicate.  It’s so stressful working day in and day out with a fussy child trying to help him learn to communicate with no results.  I’ve always been an instant gratification type of person…a controlling person…and a bit of an “OCD perfectionist”.  I NEED him to talk to me.  PLEASE say Mommy.  Please say DADA.  SOMETHING.  We (my husband and I) have been trying so hard yet all of the trying with no progression just leads to bad moods, attitudes, and feelings towards each of us.

I thought I was past postpartum depression.  Why do I feel like I’m quickly falling back into this black hole?  My need to control every situation is obviously not met.  I cannot make him talk.  I cannot make him understand me.  I WILL continue to work hard with him.  I WILL continue to not self diagnose.  I WILL begin to pray more.  I WILL admit that no matter what, I am blessed.  Life could always be worse.

The Emergency Room with a One Year Old

Why is it that anytime you wait in the Emergency Room, you wait longer than you would for a “non” emergency??? 

Friday afternoon, I was mowing the yard.  Why?  Well, in my home, that is the only time that I get a bit of peace.  The deal is that if I mow the grass, Kyler’s daddy will feed him and put him to bed for me.  Trust me, this is a great deal!  I was on my last row when Kyler’s daddy came outside holding a bleeding Kyler.  I saw blood but Kyler wasn’t crying.  When I got closer, I saw a huge gash in my baby’s head.  I almost fainted!  So, to the ER we went a racing!

When I was pregnant, I had to go to the ER several times due to spotting.  As far as I was concerned, bleeding during pregnancy was a big deal.  We waited six hours on our first vist and four on the second visit.  Obviously, we were not the priority.  Now, I understand that they were probably more critical patients out there.  Also, they always took children in before me. 

So, this time, I just thought for sure that we would be “those people” who got rushed right in…I mean, we did have a one year old with a bleeding head!!!  Guess again.  Now, I’ve mentioned before that we do have a “difficult” toddler.  He’s not malicious (at least not yet); just ancy, fussy, and mad most of the time.  Just the drive to the hosipital was a challenge in itself in rush hour Dallas traffic.  We made it and Kyler was actually being a trooper.

Once inside, there were only a few other people in the waiting area.  “Great!”, I thought.  “We really are going to get right in to see the physician.”  Nope.  First, we had to wait fifteen minutes to be called into the “Triage area” of which I still don’t understand it’s purpose.  The hospital employee asked if Kyler was up to date on his shots and attempted to put a bandaid on his head…of course, it was ripped right off.  Then we had wait another forty-five minutes to be called again.  This time, we were called to fill out insurance paperwork and assured that we were about to be called back to the “rooms”. 

Meanwhile, Kyler and his daddy had to go outside because he didn’t want puffs, juice, or Mommy…he wanted to run around and scream.  He was in a good mood despite his gash.  The problem is that we were trying to prevent another gash, keep him off the dirty floor, and if possible, not completely annoy everyone around us.  (Later, I realized that we should have just kept him inside to annoy everyone.)

Finally, after another thirty minutes of waiting, a bleeding Kyler was called back to the “rooms”.  We were actually taken back to an area of single beds all in a row with other sick and injured people.  Apparently, we weren’t injured enough to go into a “room”.  What do you do with a one year old while in an emergency room?  We didn’t have time to be too prepared.  Fortunately, we did bring a few snacks, drinks and two toys.  Unfortunately, we have a toddler who doesn’t want to play with toys; he only wants to run around and scream (as mentioned earlier).  Kyler’s daddy and I were really about to pass out from trying to keep this twenty-five pound monkey on the bed and not on the floor or in the way of others.  It was approaching his bedtime and all we could do was wait and wait and wait.  REALLY?  This is the emergency room?  Another hour and a half went by when finally one of the nurse’s tried to speed up the process by applying a topical ointment to help numb Kyler’s head before the real numbing needle was placed.  Again, the band aid covering the ointment was ripped off.  Blood was all over everything and quite frankly, I didn’t mind.  I thought that maybe he would appear more “emergency-like” if he was bleeding all over the place. 

After I lost track of the time, the physician on duty came over and stitched Kyler up in front of all the other sick and injured patients.  The screams of my child were truly unbearable.  Even my husband was unable to stand it and had to go sit down.  It was incredibly sad to witness but the physician did do a good job (at least that is what I was told).

What did I learn from this trip?  I will try an Urgent Care office if possible; but if we ever have to go to the ER again, we’re taking the ambulance….those people do get to go immediately into the “rooms”!!

And so it begins

Hmmmm.  Where do I even begin?  I’m realizing that I should’ve started blogging ages ago.  Quite frankly, the dating life alone was probably much more interesting to an outsider; however, this new world is so complicated.  Ironically, both “worlds” have strong similarities such as insecurities, the unknown, love, chaos, and unfortunately the lost identity.

I do have so much to write about and share.  Mainly, I’d like to blog my daily chaos just to keep track of the year.  Also, I hope to comfort, relate to, or even better make someone laugh over the life many of us live.  A bit of background, I am married, to what I like to call my “college sweetheart” although our dating life was filled with the characteristics listed above.  We’ve been married for five years and I stay at home with our beautiful son who is about to be 14 months old.  I should comment that he wasn’t always beautiful.  No, as a matter of fact, he was quite the little alien at first…love is blind- right?  At any rate, he is perfect on the outside but…let’s just say, not so perfect on the inside. 

Having a baby has been the absolute hardest thing to do.  The day of birth was probably the best day of my life and not because I was blessed with such a beautiful gift.  It was a wonderful day because it is the last day that I can remember being waited on and doted upon from another.  Oh, and I don’t mean from my husband or for our purposes, ”Baby Daddy”.  It probably helps that I had a very easy delivery but don’t you worry, my pregnancy was absolutely terrible.

Everyone tells you that you never know how hard it is to have children until you do it.  SO VERY TRUE.  I would probably not ever do it again.  (FYI- I’ll post more positive thoughts later…just giving background info.)  From the beginning, the unknown happens:  What do I do with this alien?  How do I hold this alien?  Do I like this alien?  Does this alien like me?  Will I get to sleep tonight?  Will this alien sleep tonight? 

I wouldn’t categorize myself as a “baby person”; however, with all of my reading and organizing, I did think that I was prepared…. HA