Weird development

I am not sure what to think.  My husband thinks I jumped the gun getting Sophia tested and looked at by birth to three.  She has had a weird weekend and it is showing us she is learning...albeit a little slower.

When Sophia was 12 months old she would crawl up the stairs all by herself.  We have a large staircase so this was impressive to us seeing as she wasn't yet walking.  But after a fall, around the same time she stopped speaking, she also stopped walking up the stairs.  Today is the first time she has walked up the stairs in 4 months all by herself!

She also learned how to point to the objects she wants versus whining until we guessed the item she wanted.  This is a new development for her as she never pointed.  But now she is.  I am not sure what to think.  I am hoping she is learning new things but I fear I may have been to hasty getting her observed by birth to three?

She is also saying mama again.  My husband is taking this as a sign that she will have a huge developmental leap and will suddenly not be learning disabled. I guess I feel the same way to a point but I also know it isn't going to happen, that she really is verbally disabled and delayed.  But there is hope for her.

Until next time we celebrate the little milestones.

Birth to three

So here we are today.  Today was the first day of our experience with birth to three.

Once again, a quick back story.  Since I, as Sophia's mom, was in rare shape, it was recommended that I go into therapy, and start parenting classes, which I gladly did.  I also got Sophia into a playgroup which she has taken to very well I might add.  After a rough first week, she is happy to go daily, and actually is able to be without mommy or daddy for 45 whole minutes!  A miracle for the baby who refused to be left for five seconds without hyperventilating and panicking.

It was during one of the parenting classes I began to suspect that Sophia wasn't talking due to low muscle tone in her mouth.  Of course, bring this up to anyone and they will tell you you read to stop reading so many books, and relax.

Well, here we are.  Finally, the day has arrived.  We were scheduled on Tuesday and told that we would be seeing a specialist today, Thursday.  So after two sleepless night worrying that my mommy instinct, or as my husband liked to call it, KMOM, might be full of static, the doorbell rings and two very nice woman introduce themselves to me as a special education teacher and a physical therapist.

To add humor, we did have one accident today, and that was when one of them, shorter than myself and the other specialist, decided to climb over the baby gate into the living room and fell.  Not funny at the time, but hysterical afterwards.

After giving them Sophia's back story, and of course my husband and my combined genetic history, which in my case was very extensive, they began to play with Sophia.

At first, she was very frightened to be around strangers, but as soon as she realized that these strangers come baring toys, and all attention for her, she soon stepped into her place in the limelight and began to eat up every word of praise sent her way.  What an hour and a half.  It flew by so fast and I was shocked at how in depth these workers were.  I had no idea they were even examining my daughter until they said they had reached their conclusion.

Before they began to talk to me about what they saw as issues with my little one, we talked about the fact that no one had listened to me all these months.  I told them that I am an educator as well as a bachelors in abnormal child psychology and how frustrating it was to have a college education and people just assume that because you have anxiety issues, that it was ok to blow off your concerns.

The special education teacher was the first to tell me her findings.  Sophia passed all of her tests with flying colors, causing my fear that she wasn't going to be accepted to rise faster than my blood pressure after eating too much salt.  However, after having taken the MCHAT, a test to see if any red flags for autism showed up, I learned my daughter, my bright, bouncing baby, failed.  

Now, this may sound a bit strange, but THANK GOD!!!! This meant that birth to three had accepted my daughter and was offering us the pot of gold at the end of the shitty rainbow.  I felt relief, validation, appreciation for these two women, and more importantly, a rush of love for my daughter, and sadness that she had to go through these challenges.

Turning to the physical therapist, she informed me that Sophia should have been in birth to three since she was 1 month old.  Apparently, there are neurological issues which need to be figured out, but this did not surprised me as her father has a lot of those issues as well.  So more results followed.  Sophia was excellent in her interpersonal skills, and social settings.  However, she failed in all walks of language development, in expressive language, what she can say, and receptive language, what she understands.  Again, not a surprise since that is why we called the experts in.

Finally, I was told that Sophia also has minor impairments with her cognitive development, and tactile thing fall into this category.  her not liking baths, hair clips, socks, shoes, all that good stuff, is because she can't handle tactile sensations.  So as the team left to go write up their reports, I now have homework.  Call the pediatrician and get them to write us a referral to an eye doctor, a neurologist, and of course, an ear, nose and throat doctor.  There is some question as to whether or not Sophia isn't speaking because she just can't hear us correctly.  She does hear noise but she doesn't respond the way she should, ie, doesn't jump at loud noises, and doesn't seek out the object making the noise.  Whether its in her ears, or the pathway to her brain, we don't know. 

About a week ago, Sophia had an absent seizure brought on, we think, by teething and a high fever.  So we are also to see a doctor to get her an eeg.  I am worried about this because she hates anything on her head and I am being told if she doesn't handle it well, she will have to be put under sedation.  This freaks me out.  But if it helps my little girl, so be it.  Of course, daddy will have to be there to hold my hand as I am sure I will break down into tears and cry.

Now what does all of the above mean?  It means that Sophia is developmentally delayed and will need speak therapy.  It also means that we have a lot of testing to go through, including a swallowing test because she hates to chew food, which is another possibility to why she may not be able to talk yet.  It also means that my daughter will struggle for a while.  But the good news is that because I got her help sooner rather than later, there is a good chance we may be able to help her develop normally and catch up.  Does this mean that she isn't autistic and will be fine?  No...it just means we can help her live a relatively normal life.

We still have to have a repeat MCHAT and if she fails this test, we have to go through another test, this one to actually determine if she is autistic.  Again, this doesn't mean she is like Rainman, but she is going to be slower developing than her peers.  But that's ok, since, if she is diagnosis ed with autism, there is a good chance I will be homeschooling her.  We shall see.

But for now, we will focus on gathering as much information as we can to better help figure out our next moves and which therapist she will need.  Until then, we will continue to shower our little girl with hugs and kisses, and talk to her with repetition hoping she will pick up some words.  She is already mimicking puppy, kitty and bye bye baby.  We will celebrate all the small accomplishments she achieves.  And we will celebrate each other, my husband and I, for we are her teachers, her protectors, her advocates.  She is our daughter, and we will continue to do what we feel is best for her.  So for now, have a good night.  I will post every few weeks or when something new occurs.

The Beginning

Normally I don't believe in writing blogs.  But I wanted to do this for my daughter, so she can see how far she has come.

Today was a hard day for my husband and myself.  Our 16 month old daughter got a tentative diagnosis of autism.  While we love her very much, this is a hard diagnosis for me, because my oldest sister is on the spectrum, and my niece and nephew are also autistic.  We knew that when we had our daughter, there was a possibility that she could have been autistic as well, but we took the chance.  It doesn't change anything for us.  As I said, we love our daughter, but it does mean changes in the household and changes in how we learn to deal with our emotions and the emotional/developmental needs of our baby.

Today was our introduction into the world of birth to three.  But before I begin to talk about those services, I would love to talk to you about why we thought my daughter needed these programs and what we went through to get her there.

Sophia was born a month premature.  She was 19 1/2 inches and 6.9 pounds at birth.  I went into labor with her at 9:30 in the morning on December 3, and by 7:35 at night, after two pushes, there was my very red baby.  (Pictures to come).  Immediately after she came screaming into the world, we knew we had ourselves a little angel...an excitable angel...but our angel non the less.

The day we were to leave the hospital with our squealing  squirming bundle of nerves, I was told that her bilirubin levels were very high.  For many who don't know, this is when her liver isn't able to process out red blood cells that have broken down.  This is what causes baby jaundice and boy, did she have jaundice.  But for us, it wasn't the yellowing of the skin, or yellowing of the whites of the eyes, oh no, she was red, bright red everywhere.  

So here I was, a new mom immediately worrying about her liver functions and worrying that she may have needed surgery, fearing the worse.  Thankfully, we had some wonderful visiting nurses who came every few days to take her blood levels and make sure she was growing.  But she had lost more than 10% of her birth weight which was not good.  If she did not gain weight, and gain it soon, she was going to be put into the hospital, and frankly, we were terrified.  My husband, bless his soul, was calm, cool and collected.  Me?  I was shaking worse than a chihuahua who consumed too much caffeine. 

Since we lived over an hour away from where my husband worked, he had to take the car everyday which meant that Sophia and I couldn't go to the doctors for treatment as we were told not to take a new born on the bus.  So we had to get a billy blanket.  This isn't a blanket at all, but a piece of hard plastic that is lite up worse than an overzealous Christmas tree.  It was hot, and it was heavy, too big for my small bundle.  For the first week and a half after her birth, she slept in my arms, with this blanket wrapped around her side, pulling at her.  Every few hours, we were to switch sides so she didn't get burnt from the lights.  The purpose?  To ease the pressure off her liver and help break down those pesky red blood cells.

After what seemed like endless nights of no sleep, and not from midnight feedings, she was released from the billy blanket.  Thank god.  I hated that thing, and I feared, it hated me too.  Finally, my squealing infant was only red when she cried.  Or so we thought.

This started the next saga for us.  Sophia not only had issues with her liver, but she also had issues with her digestion.  Two weeks after her birth, while visiting my mother in law in the nursing home, an overzealous nurse with a fondness for babies, asked to feed the little darling.  What a mistake.  She threw up curdled milk, all over herself, all over my husband's suit that he was wearing for Christmas Eve mass, all over the nurse but thankfully managed to avoid grandma and mom.  

So here we were.  Did we talk to the doctor about her amazing ability to projectile vomit all the way across the room, or do we wait it out?  The decision was made for us when she began to throw up after every feeding.  At the time, we were with WIC to help us pay for the stupidly priced formula she required.  So we decided instead of talking to the doctor, we would talk to the WIC office.  They were the first to tell us about a milk protein allergy they suspected Sophia had.  Well news flash.  We had no idea what that meant or how it would affect Sophia.  The WIC office recommended we switch to soy milk, which we gladly did, hoping that she would stop vomiting up her milk an hour after she consumed it.

At her next doctor appointment, we told our Pediatrician that we had switched her to which the doctor told us that sometimes babies are just pukey and that we had a pukey baby.  He recommended that we stop switching her formula.  At this point, we were happy with soy, although it stunk.  So we agreed to stop switching her formula and went about on our merry way.

If anyone thinks that is the end of the drama, head to detention.  Do not pass go, do not collect $200.  Nope, our little angel turned out to be a devil in disguise as she also...wait for it...had a soy allergy.  The baby eczema we kept asking about, the yeast infections on her neck we panicked about and couldn't control, all because of her allergy to the soy formula.  Worse for us was the straining to poop.  She would strain for hours on end trying to pass tiny nuggets.  Her little face would turn red, and she would just scream for hours as her stomach blew up like a balloon from all the trapped gasses and bowel movements that refused to come.  An hour after she would take a bottle, we would notice a rash in her head and her eyes seemed to swell.

So off to the ER we went.  Now, if your a mom and you trust your gut to mommy instinct, you will know that most of the time, even though doctors tell you to trust those instincts, they do not LISTEN!  So we were released from the ER no step closer to figuring out what was wrong with our baby.

I had heard through a mutual friend, that my sister's two kids had the same issues and were helped by Nutramigen.  Well off we went to buy an even more heinously priced formula, $25 for one jar of food that lasted us barely two weeks!  All of which we had to pay out of pocket for, which meant that the husband and I did not eat for a few days.

Once on Nutramigen, all the pimples, the eczema, the straining to poop, the swollen eyes, the puking, all of it gone just like that!  So off we went to the doctors to tell them they were wrong and we, HER PARENTS, were right!  If only they believed us.  We were allowed to get a order written for WIC to pay for her formula, THANK GOD FOR WIC, and that was the end of that line of conversation.

When Sophia was 2 months old, we had an opportunity to move closer to my husband's work, so off we went, moving in with a friend of my mother's.  Things went great for us for a while.  That is, until her 4 months shots in which both her legs blew up like salami, and she began to wheeze.  An hour trip to the doctor for them to say nothing was wrong AGAIN!  We let it go though in our hearts, we knew something wasn't quite right and we were switching pediatrician anyway, so who cared what they thought right?

When Sophia was 6 months old, we finally got her into a pediatrician that specialized in allergies, and we tested her for food based allergies.  Validation at last!!!!!  She had a milk protein and soy allergy that required us to carry an epipen around should she come into contact with soy again.  Pediatrician- 0...mommy/daddy-2.

Our saga should have ended there, but unsurprisingly, it did not.  We knew something wasn't quite right with Sophia, when at 6 months of age, she learned how to take off her diaper and throw it.  Mind you, this was a kid who had not yet learned to sit up, crawl or roll over but she was able to take off pants and her diaper!  Yup, we had an evil genius on our hands.  

After figuring out that we needed to keep panties on the little beastie, we had a huge developmental leap.  The week of my husband's birthday, she started babbling.  A day later, she sat up on her own.  A few days later, she turned over.  A day after that, she was crawling.  I kid you not.  In one week, we went from a silent, unmoving baby, to a kid you had to watch every minute.  Great birthday present for dad though don't you think?

With normal development continuing to hit at the appropriate times, we were thrilled to have made it to the first year.  All the endless  sleepless nights were finally over, her digestion issues cleared up, and she was smart as a whip.  At 12 months of age, Sophia was able to feed herself with a spoon, and eat with a fork.  She surprised all of us by saying, mama, dada, thank you, mnammnam, a muppet phrase, bye.  Her height was still in the 95% and her weight was still low in the 30%.  

So tell me, if I had such a bright child, why did I start to research birth to three and ask for help?  Well this darling child couldn't go into her first year like a lamb.  Nope, she went like a lion, and it wasn't pretty.

First, we noticed that we were unable to change her clothes without temper tantrums.  baths, which used to be fun, were now a test of will, usually with her father and me giving up and letting her run around the bathroom naked to dry off.  Socks went on, and socks flew off.  Hair fell into her eyes, bows followed the way of socks.  The bright child who could say five words?  Now she could only say 2, Hi and dada.  She did manage some growth, learning to walk at 13 months and walking up stairs at 12 months, until she fell and hit her head.  But yeah, development slowed down and went backward.  This is why we decided we needed help.

Fast forward to her 15 month appointment.  Sat down with her pediatrician after a record breaking snowstorm, and talked about her development, or lack thereof.  Doctor recommended birth to three and said she would make the referral.  No referral made.  Mom began hyperventilating and sought the help of a shrink.  Shrink referred mom and dad to DCF who finally took mom serious.  In case you are keeping track, MOM/DAD-3, Pediatrician-0.  

Two weeks after the referral, Sophia was examined by professionals at birth to three.  Next post...all about birth to three and what they think is up.