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!

Another update- this time fish oil/autism

Well, I put “fish oil” in the title of this post for anyone who was interested in an update on our situation regarding fish oil (in particulary Omega 3’s & 6′).   I believe this stuff works!  I don’t think it produces miracles (or at least not in my child); but we have definitely witnessed improvements each time Kyler started on it.  I say “each time” because we had to take him off of it for 3 days in order to have lab tests completed.  We then placed him on a new kind of fish oil.  Again, as mentioned in prior posts, we were delighted to hear more babbling sounds!  His babbling has continued for 14 days which for us is incredibly encouraging!

This blog is going to have a change of pace going forward.  I’m going to focus more on autism or at least autistic behaviors, methods to improve the condition, and HOPEFULLY a recovery!

Baby Blues or Postpartum Depression (Part 5) I don’t want to admit it

So, we got through a VERY LONG first month with our brand new alien, Kyler.  We decided to cancel the contract on the house we were building because it was taking them WAY too long.  (We signed a contract when I was 3 months pregnant and when Kyler was 1.5 months old, they had not even broken ground…)  Fortunately, we were able to find a brand new inventory home and just decided to buy it.  It worked out for the best.  Trying to deal with a newborn, being completely unhappy, “settling” on a new house, and now preparing to move was not the ideal situation.  Most people would be one the edge of a nervous breakdown-right?

Apparently, wrong.  I was so lucky to have my family help us move into our new home.  My parents stayed with us for a week while we unpacked.  Thank God they did because I may not have survived.  My emotions were out of control.  I was so at my wits end with Kyler that I basically refused to take care of him.  How terrible is that?  It was like I was turning a switch off in my head and just going to pretend that I didn’t have a child anymore.  I knew my parents were coming to help and I was going to let my mom have him.  My poor mom.

It was kind of out of nowhere that I just went out of control.  Everything, and I mean EVERYTHING either made me yell or cry.  I wanted no part of Kyler and let my mom take care of him all day every day.  I had moved into a brand new beautiful home but could not appreciate one bit of it.  All that I could see was everything that I couldn’t do anymore because of my alien.   There would be no time to decorate, much less shop for decorations, no time to enjoy the pool outside, no time to cook in the new big kitchen.  Again, pity me.  But, in my world, it was serious and that is how I felt.  I was losing control.  Well, I had already lost control but I was losing it mentally!  I can remember getting so mad at Baby Daddy for the smallest things such as how to make a grilled cheese sandwich.  I absolutely hated him.  It seemed (to me) that he had it so easy, could just work on projects outside, go to work, and not worry about his son or me.  Although my mom was caring for Kyler, I felt like I couldn’t get anything done.  I needed to empty boxes, pay and file bills, grocery shop, etc but felt as though I couldn’t get it done.  There was no reason why I couldn’t when I had plenty of help that week.  Subconsciously, I believe that I was so dreading my parents leaving and having to face the real world with Kyler again, that I was procrastinating and hoping that would somehow stall life.  The real story was that I didn’t want to face life so bad that I was taking everything out on everyone.  All of the yelling at Baby Daddy, all of the “poor me” conversations with my mom were really just me mad at myself for not getting it together.  Everyone has kids and survives.  What was wrong with me?

Finally, someone, I forget who first, mentioned that maybe I should talk to my doctor about postpartum depression.  WHAT?!  I DID NOT have postpartum depression.  My life just sucked, of course.  But, it didn’t.  I had a beautiful new house, a handy and helpful husband, and parents who were a blessing…I also had a healthy baby boy.  Why did I insist that my life was so bad?  Then, someone else mentioned that maybe I should consider talking to someone.  Again, I was offended.  I think when the third person (maybe my mom) mentioned that I was acting a bit out of control, I finally decided to mention it to my doctor.

Ok, I’ll mention it….although I do not have postpartum depression and I’m not taking any stupid anti-depressant that is going to make me fat.  I didn’t need medication – I thought it was ridiculous for people to take antidepressants anyway…  Finally, one afternoon after completely losing my cool with everyone and again realizing that I wanted NOTHING to do with my child, and coming to grips that my parents were leaving in two days, I did call the doctor.  They suggested that they would call in a prescription for me but that I still needed to come in to see my OB.  I was very concerned with the side effects of taking medication and thought that I probably wouldn’t take it anyway but at least I called…  When the nurse mentioned that it may cause weight gain- FORGET about it.  The last thing I needed for my “bad moods” was to gain weight.  I’d surely fall into depression then.  Regardless, I picked up the prescription in good faith but was not going to take it.

I did, however, go to see my OB.  My reasoning is actually hilarious yet sad.  I thought that if I cried enough and explained my sorry life to her that maybe somehow she would make it all go away.  Well, in a sense, she sort of did.  I did cry…but my tears were real.  I felt stupid and pathetic but let it all out anyway.  The important part was that she didn’t appear to judge me in the least.  She sympathized with my situation and comforted me in a way no one had been able to up to that point.  She “diagnosed” me like it was certain and no wonder I had been acting the way I had been.  I couldn’t help it.  The best part was that she did prescribe something for me (something different than before) and it changed my life.

Perhaps, I should have been much less judgemental of all the people on antidepressants.  What did I know?  Well, I learned quickly that if you are fortunate enough to find the right one for you, it may make all the difference in the world.  And it did.  Immediately.  I finally admitted that I did have postpartum depression and I wasn’t embarrassed to say it aloud.  I was also comfortable with admitting that I was treating it with medication.  Maybe it is just in my head and the medication really didn’t do all that much?  What I do know is that I still take it and wouldn’t dare stop.  I’m not going to go into detail about what sort of changes I felt or what I’m taking.  I do want to encourage anyone reading this who feels similar to the way I did to talk to someone, preferably a doctor.  Be open-minded.  I do not feel that I am healed.  I believe that maybe depression will always be with me somehow but I do feel better.  Over the past year since I was originally treated for postpartum depression, my husband has faced many potential layoffs with his job (fortunately, he still has it), we were transferred across the country to a state where I know no one, and my little Kyler (to whom is now absolutely BEAUTIFUL and in no way an alien) is now starting to show a developmental delay.  The latter situation is testing my strength right now.  I have been able to deal with selling and buying yet another house, moving far away from my family and friends; but this new issue with Kyler is very hard to deal with for me.  Hopefully, we will work through it but I am admitting that mentally, I’m losing it a little again. 

Well, if for nothing else, maybe someone reading this feels or felt similar to me and can either get help or at least relate.

Speech Delay and Omega 3’s & 6’s (Week 1)

So this week, we started Kyler on the Omega 3’s & 6’s, AKA fish oil, for his speech delay.  I want to keep a journal/blog of weekly progress.  I’m in a bit of a hurry tonight but I will quickly note any differences (positive or negative) that we’ve seen in him.  He has been on this supplement for seven days.  As of this week, the following changes in speech and behavior have occured:

Positive:

• Almost immediately started babbling the “da” sound.  Not everyday or all day but almost everyday.
• When in very playful moods, we heard many babble sounds such as goo, gi, da, boo
• One day, it sounded like he was using “goo” (like good minus the d) for book.
• He has also started using “gi” for truck.  He immitated us for this sound as well.
• Most notably, his eye contact and attention span have seen much improvement.  His speech therapist also was impressed in the change over the week.
• He fed himself with a spoon for the first time.
• He played “splash” in the bathtub and enjoyed his bath.  (Usually, he does not like baths.)
• He started to play “ball” with us by standing at the top of the stairs throwing the ball down to us.  We would then say, “ready, set, ball” and throw it back to him.  He seemed to thoroughly enjoy this activity.

Negative:

• Loose stools but that was already happening with him
• Not willing to rock in order to calm down for nap or bedtime.  He was very energetic and I would have to put him in his crib awake and let him cry a minute or two and then he was asleep (not necessarily a completely bad thing).

All in all-  It was a milestone marking week with a little more sounds and better attention.  Coincidence?  Perhaps.  I’ll update next week hoping to have more sounds!

Baby Blues or Postpartum Depression (part 4) The Everyday

So, I was on the third week of having had Kyler, I was still bleeding from the delivery, and still hoping that maybe I was bleeding bad enough to be sent back to the hospital.  Insane right?  We were so exhausted from not getting any sleep.  Kyler would grunt the entire night and we couldn’t figure out what was wrong with him besides the generic “colic” term.  Perhaps he really had colic; but no one was able to help us help him.  Meanwhile, the breastfeeding was such an issue.  I just hated every minute of it.  I hated waking up in the middle of the night and fighting to get him to latch on correctly.  I hated having to be half dressed for most of the day.  I hated how uncomfortable I was when he was feeding. 

Unfortunately, I was still not bonding with my baby.  Kyler was not “cute” by any means, he was so tiny and fragile.  He wasn’t progressing with anything that my friends’ babies were doing.  I was so expecting a gerber baby but had an alien baby.  This is definitely sounding like a pity me party; but in all honesty, it was very real to me.  Selfishly, I just wanted my old life back.  We waited until I was 30 to have a baby so perhaps I had just been independent for too long.  I wanted to feel like me again and not just a milk maker.  Still to this day, I get depressed to hear other mothers with their perfect new babies who slept all the time and never cried.

We were temporarily living in a condo while we waited for our new house to be built so our living situation didn’t help matters. I remember just holding Kyler for hours praying for him to stop crying while my husband was at work.  I would walk in mini circles outside our front door singing lullabyes to him for literally hours at a time.  Tears would just pour down my face.  Maybe I just didn’t know what to do with him.  Maybe if I had another one it would be better because I could do things differently.  At this point though, we’re not taking any chances, one is enough! 

It was so frustrating to not be in control of my life, home, baby, etc.  Our condo was a wreck which was definitely adding to the depression.  As mentioned in other posts, I am a perfectionist and when it comes to clutter and messes…they make me CRAZY!  When you have a newborn, you have clutter and messes- especially when you live in a tiny condo.  The baby gear was everywhere, our dog’s fur was everywhere because I couldn’t vacuum like I wanted, gunk was building up everywhere due to lack of alone time to get it cleaned.  I looked absolutely HORRIBLE.  Fortunately, I DID lose the weight and my body was returning to post pregnancy-ish again.  Sort of.  Jeans and tee shirts still weren’t fitting right but the scale was looking a bit better.  Basically, I didn’t have time to eat and what I did eat was coming right back out in the breastmilk.

My mother in law was truly a lifesaver throughout Kyler’s first few months.  She helped me by keeping him at least once a week.  Thank God!  While he was away,  I wouldn’t rest.   I’d just clean, read baby help books, and eat as much as I could!  I would analyze everything about the way I was taking care of Kyler trying to find a miracle solution to his eating and sleeping issues.  BTW,  I tried all sorts of herbal remedies and gas medicines: Colic Calm, various Little Tummies products, and Mylicon.  None of which were successful.

I felt sorry for myself everyday.  It was weird to be so down…I mean just DOWN.  Why wasn’t I bonding with my baby?  Why was I being so selfish wanting my free time back?  Why did it seem like I was the only one feeling this way?

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.

Speech Delay and Omega 3’s & 6’s

As I’ve posted before, Kyler may have a speech delay.  He has begun therapy with Early Intervention and I think that it will at least give my husband and I a few ideas of how to work with him.  Unfortunately, I just don’t think that once a week with a SLT is enough.  I’ve sought out private therapy and will be meeting with someone next week for an evaluation.  I’d like to get some sort of idea of what is causing the delay.  EI doesn’t diagnose; so they are just there for support and ideas. 

I’m a control freak and absolutely cannot stand the helpless feeling I have with Kyler and his speech issues.  Lately, I’ve really felt like I’m getting postpartum depression all over again…or maybe it’s just depression this time.  ??  I desperately want to hear my baby say Mama!  He used to say Dada and YumYum but now I’m struggling to get any babbling.  We were so incredibly happy, thankful and relieved when he finally said Dada (at 12.5 months); so when he stopped, my mood tumbled fast!  I’m heartbroken over this.  I know that he’s still very young but I can’t help but worry.  The problem is that he never began babbling.  Most babies fumble upon mama or dada very early on but don’t know what it means.  Later around a year, they say it with meaning.  Kyler never babbled at all…at all.  He has just recently started making sounds other than grunts.

Of course, the internet has information on everything so I have just been going to town searching for possible answers and solutions.  My husband absolutely freaks if I mention autism.  I just think we need to be real because he does have a few other red flags (wheel spinning, not responding to his name, not talking).  The more I research and really watch and listen to Kyler, I’m beginning to believe that it isn’t autism.  He is trying to communicate with us and DOES understand many things that we say.  Perhaps his lack of interest previously was due to my own inability to sit and entertain him for very long.  He had to learn to be independent early on.  Anyway, so I’ve really been working with him and I do see some positive things going on although still no words or even much babbling.

So, to the internet I go for more research.  I came across childhood apraxia of speech.  I have MUCH more research to do on this but I do see many symptoms in Kyler of this condition. I’m definitely anxious to hear what the private therapist thinks about it.  At any rate, I’ve found where many parents have supplemented their child’s diet with fish oils containing Omega 3’s & 6’s and have seen vast improvements in their children’s speech (and behavior).  Of course, I’m sure it’s not a miracle drug..actually it isn’t a drug at all and is completely natural.    I hate to give myself false hope but I’m starting Kyler on supplements.  I mean if for nothing else, they are very good for children and adults. 

Yesterday, we gave him one gelcap.  The dosage for an adult would be about 6 in a 24 hour period.  Ironically, that very afternoon, he was making much more eye contact and more noises.  Obviously, it was just a coincidence.  This morning, I put one in his breakfast…I heard “da” faintly about 10 times today.  Coincidence???  So, I’m keeping my fingers crossed and praying that this is going to help him as well.  I am also working very hard on incorporating the EI’s suggestions into our daily routines.  Maybe I’m just more aware of what’s going on…nevertheless, I got a few babbles today!!!

I’m very interested in hearing from anyone who has had experience with a speech delayed child and the supplementation of Omega 3&6.

I’m going to update this in one week to see if there are any more improvements

…..keeping my fingers crossed….

Baby Blues or Postpartum Depression (Part 3) Crashing

It was Kyler’s 2 week birthday and my four year anniversary with my husband, Baby Daddy.  My MIL volunteered to keep Kyler for a few hours so that we could have some time to ourselves.  She thought maybe we could go to dinner or to a movie.  It was a nice gesture but I had so little energy and motivation that all I wanted to do was crawl under my covers and NEVER come out.  I felt guilty for letting someone babysit my infant this young.  My family members would surely have something to say about it.  I DESPERATELY wanted her to keep him though.  I was so incredibly thankful but pulled the “oh, you don’t have to do that” line.  Fortunately, my husband had enough sense to insist that she keep him. 

It was supposed to be for the best but it turned out to be for the worst.  What was left of my mental stability came crashing down as soon as we dropped him off at her house: uncontrollable tears, terrible thoughts about running away, even wishing for something bad to happen to me so that I could go back to the hospital.  I didn’t want to leave him with her because I didn’t want to have to get him back.  My husband kept assuring me that he would be ok with her…thinking that I was sad and worried to leave my baby.  I finally explained that my tears were because I didn’t want him back.  EVER.  We went straight home and the two hours that they kept him were the fastest two hours ever.  I just laid in bed and prayed for the ability to disappear. 

It was at this point that I wondered if something more than the baby blues was happening to me.  Was this postpartum depression?  I convinced myself that I was just feeling sorry for myself and that I needed to buck up.  Unfortunately, I was mentally and physically unable to buck up…things got worse.