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!

Speech Delay and Omega 3’s & 6’s (Wks 2-3)

I really wanted to update this last Saturday.  If I had, it would have been much more positive.  Last weekend, we finally heard DaDa again.  Kyler said it a few months ago but lost it.  We were THRILLED to hear him finally say it again.  We have much more eye contact and smiling directly at us.  He has also pointed twice which is big for us.  The DaDa was fairly consistent for 5 days.  Unfortunately, he lost it for 2 days but is sort of picking it back up again.  As you can tell, we hang on every sound!  He had a semi-traumatic day on the day he didn’t really babble.  And, he has four molars coming in all at once.  I tend to believe that when he is truly teething, he makes less noise.  Perhaps, it is painful for him to babble or something.???  At any rate, it has been an up and down week this week but last week was GREAT!  I’m hoping that he’ll continue to use DaDa and “Gee” and add on a few more sounds.  We believe we are hearing “cat” but it doesn’t mean cat.  If anything it is what he is trying to call our dog.  Also, we’ve noticed lots of “bbbmmm” kind of sounds and maybe, just maybe “mum”.  I certainly would NOT consider either sounds to be new words. 

Update on therapy….we thought everything was going well but our ECI speech therapist recommended bringing in a developmental specialist.  I also took him to a private therapist who informed me that she believes he has some sensory issues along with a speech delay.  I was crushed by both issues.  I want so badly to believe that he is just a late-talker but it is looking more and more like something else.  We are going to continue with the ECI therapy including the developmental specialist and a nutritionist.  However, we’re going to wait on further private therapy for the time being ( at least until Kyler is 18 months old).

Something new: we have also decided to implement a gluten and casein free diet.  There is so much debate about this topic and learning delays/disorders.  We figured, what the heck!  There is more background as to why we are starting this diet and I’ll write that in another blog.

Bottom line: Fish oil/Omega 3’s & 6’s, are they working?  Yes, they appear to be working.  I’m not blown away but I’ve seen much improvement despite a few regressions.  It’s only been 3 weeks and he only takes one supplement per day.  I’m anxious to see how he is progressing after these teeth are completely in and after it’s been a total of 6 weeks.

If anyone has a suggestion or could tell me how much their child takes of the fish oil supplement, I’d greatly appreciate it.  I’m just wondering if he is taking enough.

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.

Baby Blues or Postpartum depression? (Part 1)

I’d like to write about my experience with postpartum depession.  It may take a few posts to get everything out but I’m at least going to start it.

Let me go back a little over a year ago…Kyler at 3 days old….

In hindsight, maybe I should have known that something was not exactly “OK” when I just DID NOT want to be released from the hospital.  Seriously, I wanted to stay forever.  This alien, as he was known as, slept about 22 hours a day; so what was my problem?  It wasn’t that hard.  Well, the breastfeeding was kind of hard but I was determined.  I promised friends and family that I’d give it a try.   I enjoyed the sessions of help from the nurses- even if I was nude and at the mercy of a stranger.  At least they were telling me what to do.  I was really enjoying the free food which was actually managed like a hotel with room service.  The nurses didn’t exactly “take him” as much as I’d hoped but I was ok with that…I was hip and knew that the baby stays in the room these days.  Changing diapers was a bit of a problem at this point because it was so hard for me to get off the bed and waddle over to the changing table (that I couldn’t reach unless standing on my tippy toes).  So, my husband did most of the changing…bless his heart.  The nurses had that swaddling thing down pat; so Kyler would fall right to sleep after they finished with him.  Come to think about it, of course, I didn’t want to go home!!!  I was being waited on hand and foot and for the most part, so was Kyler. 

I have to say, it did all start when we were packing up to go home.  First of all, let me admit something about myself: I do struggle with a few OCD/perfectionism issues.  And, I didn’t want to get pregnant with fear of getting fat (lame but true).  So, when I tried on my “going home” outfit and my body was completely disproportioned, (and I mean DISPROPORTIONED!), I had the quick realization that I wasn’t going home to the “home” that I once knew.