Saturday, February 22, 2014

Our Special Needs Journey:Kid #2: Taylor's Story

As busy as life has been, I really wanted to finish sharing my children's stories with the internet world, so that the background information is there when I'm writing updates.  It seems to make sense to provide the whole picture. That, and I love to talk about my children of course!

I went into labor with Taylor at 26 weeks along & was promptly placed on bedrest for the next 9 weeks.  I remember checking in at work a dozen times a day at first, then eventually getting used to being home and dreading my return (5 days postpartum, the same day she came home from the NICU, I was back at work - we needed the money).  She held off on her arrival until almost 36 weeks along, then came fast and fierce.  

She was born at 6# 9 oz, with fluid in her lungs and some breathing issues.  She was the biggest baby in the NICU and was only on oxygen for 3 days and feeding tubes for 2.  She was bottle feeding (I pumped for a couple weeks) like a pro and spent just under 5 days in the hospital.  I, however, was not well.  

I hemorrhaged and while Dan joined Taylor in the NICU I was all alone in a dark delivery room, on painful Pitocin to help my uterus contract.  I didn't end up needing a transfusion, Praise the Lord, but did have a clot in my leg the next day. (I will have a pity party here and say that going back to work was physically painful and emotionally draining.)

Taylor was a very easy baby - happy & content.  Which worked well for the stage of life we were in - working opposite shifts with just 12 hours of daycare a week.  She did not speak more than a couple words until Julia went off to Kindergarten when she was almost 3.  I noticed she was not very cuddly and struggled with transitions, but as a teen mom I had very little basis of comparison.  
She was 3 and a half when we had her diagnosed with Autism.  She was enrolled in a great preschool program through our city's Early Childhood program, and they caught on to her "differences" right away. Within a few months of Julia being diagnosed, Taylor was officially labeled and had an IEP.  It was all a bit overwhelming!

I want to be careful, as my daughters are old enough now to navigate the internet and read - and I don't want to invade her privacy or hurt her feelings, but I want to share for so many reasons --- advice, support, encouragement, tips, inspiring another...

Taylor is 9 now, and truly the best big sister EVER! She reads books to her little brothers, tells jokes with Dean, and sings Baby Bruce to sleep.  She is awesome at organization (WHY in the world she is so messy is beyond me) and SUPER creative! Just stellar at drawing and other types of art.  She loves singing (and has certainly inherited my musical abilities - none, nada, tone deaf), reading, animals, and fashion. Her love for the Lord is infectious - she gets so much joy from worshipping God!

Her official "labels" (not that one is defined by them) are: Autistic Disorder, ADHD combined type, Anxiety disorder, Sensory Processing Disorder, Developmental Coordination Disorder, Dyslexia, Phonemic Awareness Disorder, Speech Articulation Disorder, Nocturnal Enuresis, Sleep Apnea, Reactive moods, Precocious Puberty, Near-sightedness, astigmatism, and Asthma.

She could have had plenty of sleep, be well fed, comfortable, had her medicines, and randomly swing from loving, sweet, and giddy to an over the top tantrum without prediction.  We try to learn her triggers, but it can feel like walking on eggshells around her somedays. If the frustration elevates and is not dealt with properly, she can kick a hole in the wall, bite me, spit on me, throw things, and so on.

My strategies are to give big squeeze hugs, have her take a mental time out to listen to music with her headphones, send her to do wall push ups and jump on the mini-tramp, (and counting to ten if we are out and about), etc.  My goal is to give her tools to deal with and express her frustrations properly.  Oh, and avoid them if possible.

She is VERY easily distracted and getting her to take her pills and use her inhaler each morning and night can take, NO LIE, several HOURS.  She is a very sweet girl as long as you do not ask her to do something she doesn't want to, like wake up in the morning.  I do struggle with balancing how many responsibilities to give her, waffling between teaching her to embrace the unexpected and changes and avoiding extreme meltdowns.  Parenting an explosive child can be mentally draining and requires I ask God to equip me daily.

She is theatrical and emotional like her mother.  She is prone to worry and fear, and her mind goes to the worst possible scenario.  The hard part of this is I relate - I know what it is like to have those emotions but I have always been able to express what I'm feeling.  She isn't.  She doesn't know what she feels, doesn't understand, can't label emotions.  Therapy for this begins soon though, so I'm happy about that!

She had her tonsils and adenoids removed a few years back and that has helped her get a bit better sleep.  Some of her health issues have really improved - due to her precocious puberty her bone age is very advanced.  She had the bone-growth of an 11.5 year old when she was only 7.  She is much taller and heavier than her older sister.  There was a time we had to very carefully watch her cholesterol and it was so sad to buy maxi pads for my 6 year old (yup, you read right).  

I am happy to say she now has a healthy BMI and perfect cholesterol levels.  She is now at an age where it is not terribly abnormal to need monthly visits to the drugstore (is that cryptic enough for you?), and her bone growth is slowing down to a slightly more appropriate level.

Now she gives tons of hugs, has graduated from intense physical therapy (hip/leg issues), and has made much progress in speech therapy.  The Occupational Therapist believes she can help her overcome some of her other issues - like picking scabs.  This poor child has an intense need to pick at her skin all over her body and scratch deep until it bleeds.  Then picks the scabs.  Today I counted ELEVEN places I needed to bandage and wrap up to try to prevent picking.  She has scars everywhere from it.

Overall she is doing really well.  One of her greatest struggles at this point is her asthma.  She coughs, wheezes, and struggles to breathe daily.  We've got A LOT of meds - in pill form, inhalers, meds for the nebulizer, even a liquid prednisone.  Next week she will have a CT scan of her sinuses.  The one thing that has helped the most is Omeprazole to decrease nighttime coughing from reflux.  She may need an EEG and colonoscopy as well, but it's at the bottom of the list right now.

I do wish she had friends, people called for playdates, that it didn't take so much time out of every day just to have her teeth brushed, those sorts of things. Because we don't enjoy seeing our children struggle or seeing them be so lonely.  She can only handle noise and crowds and lights for so long before she is overwhelmed by it all, so even something she really enjoys doing - like going to an amusement park, can become a frustration for her.

One thing I'm particularly proud of? She can devour chapter books at and above her grade level (despite learning disabilities that make reading and writing difficult), writes really fun stories, and her spelling has improved THREE grade levels in less than a year.  (We play Boggle every day - that has helped her a lot.)