Tuesday, November 12, 2013

It's OK to be Different.

I have always known my daughter was different.  Nothing I could pinpoint, just an aura of difference if you will that hung about her tiny little head and set my motherly instinct on high-alert.  Unfortunately, as she grew, I became convinced that she was simply the most high-maintenance, unhappy, finicky, and at time, just plain ill-tempered child I'd ever met (my first had been the world's happiest baby so I had no clue how to handle this squalling red-faced ball of infant).  In the first year she was alive, my husband and I only left her with a babysitter three times (twice with my mom and once for a few hours with his mom).  One of those times, we had to come home early because, as my mom said on the phone, "She just won't stop screaming and I don't know why."  That was the story of my daughter's first two years on Earth.  She wouldn't stop screaming and no one knew why.  After going through testing for stomach conditions to explain her colic, receiving a diagnosis of GERD (Gastro-Esophageal Reflux Disease), putting her on medicine that did absolutely nothing to help, then struggling through five straight months of recurring ear infections that finally resulted in having ear tubes placed, we thought we'd come out on the 'other side' so to speak.  Shortly after having the tubes placed and right after her first birthday, our little girl started walking.   
Opening birthday gifts with a bandaged hand.
Surely things could only get better now.  She was mobile and seemed slightly more content as a result.  Temporarily.  Then the screaming came back full force and actually, if possible, got worse.  She screamed all day, refused to wear clothes, hurt herself mildly to severely at least once a day (burns, bruises, scrapes, etc.), had tantrums that lasted for an hour or sometimes more, and if that wasn't enough, her favorite activity seemed to be climbing onto high places and jumping from them.  As parents, we were physically, mentally, and emotionally exhausted, and it began to affect our older son who would sometimes sit in the floor with his hand over his ears shouting, "Make her stop screaming Mommy!"  The worst part of all was that by the age of two, my daughter had completely withdrawn from me.  I didn't know how to love her or meet her needs.  And without her basic needs met (whatever they were), she was feeling rejected and unloved; resulting in an emotional void where neither of us knew what to feel about the other.

Finally, a month after her second birthday we talked to our family doctor.  At this point, our daughter wasn't talking and after doing some research, we realized this was a 'red flag' concern for a toddler's development.  Our family doctor referred us to a developmental clinic and the ball started rolling.  To make a long story short, our daughter received two major diagnoses from this referral process.  The first is one of verbal apraxia or childhood apraxia of speech.  This is a neurological condition in which her brain and muscles do not work together to enable her to perform the motor-planning and muscle function required to form words and language as she desires.  (Can you IMAGINE??)  The second diagnosis she received was that of Sensory Processing Disorder or SPD.  This too is a neurological disorder in which sensory input causes a "neurological traffic jam" in her brain.  Our blond-headed monster child was not throwing tantrums in the grocery store because she was badly behaved, but because the itchy tag on her clothes, the noises surrounding her, the fluorescent lights, or maybe just her right sock that was slightly twisted in her shoe were causing an overload of information that her brain could not process and organize like you or I could.  (Again:  CAN YOU IMAGINE???)       

At one point in time, this WAS her happy face.

Our daughter has been in speech therapy for five months.  We go "to town" as the kids say, three times a week and our daughter works with her speech and language pathologist for 45 minutes each time.  She also receives occupational therapy once a week for an hour at a time.  Both of her therapists use Sensory Integration techniques to assist in meeting our daughter's specific sensory needs, which enables her to focus and improve her attention span.  These techniques (used at therapy and at home) have also brought about a host of other positive changes in her behavior.

At her first speech evaluation, our daughter (26 months old at the time) was assessed as having the speech/language skills of a 15 month old infant.  She understood us, but she could not express herself through language (hence all the screaming and unintelligible babbling, but mostly screaming).  Today, as I write, she is conversing with her older brother about what movie they would like to watch when Daddy gets home (her vocabulary is fairly limited but growing and she is able to speak in 4-5 word sentences consistently).  To our family, that is a miracle.  I wondered what her voice would sound like for so long it catches me off guard at times that I'm actually hearing it.

Ahhh, latex.
After her occupational evaluation, her therapist informed us that our daughter is a 'sensory-seeker,' thus explaining the risk-taking behavior (jumping, climbing, crashing, banging, stomping, rolling, spinning, I could go on and on).  Combined with an under-responsiveness to pain, this has been anywhere from stressful to terrifying.  I have said half-jokingly that I haven't 'raised' a daughter, I've just tried to keep one alive!  She also struggles with some tactile defensiveness (she is overly sensitive to things like seat belts, scratchy clothes, and hair bows).  She is affectionate on her own terms, but an uninvited touch can set her off in an instant.  She has major oral defensiveness which makes teeth-brushing sound like an amputation without anesthetic is happening in our bathroom every night (a vibrating toothbrush has helped some with this).  She also struggles to stay asleep and wakes often during the night, unable to soothe herself or settle back to sleep on her own.  She is extremely sensitive to smells (she can detect very light scents/odors before anyone else notices them), but rather than avoid them she seeks them out (the stronger the better).  She smells things most people wouldn't (rocks, cans, pencils) and nothing soothes her more than the smell of a latex pacifier.  She is terribly picky eater and cannot tolerate certain food textures.  (For example, she would rather die than eat a plain piece of cooked chicken.)  I could go on, but I'm sure you are getting the picture.  Different things bother her more or less on different days, so as my husband says, you never which kid you're going to get when she wakes up.  Some days are hard.  Some days are great.  We've learned to take them as they come.

The point is, our daughter has made massive strides of improvement over the past six months.  The little girl we have today who loves cats, baby dolls, and going to the library is a far cry from the withdrawn angry toddler whose toys collected dust as she spent her days alternately terrified of the world and throwing herself off the furniture.  At the beginning of the 'journey' so to speak, as a mother, I was angry, upset, and nearly paralyzed with fear of the unknown.  I worried about what the future held for her, and was scared to get answers to questions like what if she has autism or what if no one believes me?  Today, I blog before you to say that my daughter is an amazing child.  She would be an amazing child whether a doctor had found her to have autism (she is not on the spectrum) or whether a doctor had told us we were imagining her sensory issues (we were not).  Our daughter is a person, an individual, with unique needs and wants, like the rest of the world's population.  Children with autism, developmental delays, speech problems, sensory issues, physical impairment, or any other form of special need are just that; individuals.  While their needs often differ from what might be considered 'typical,' and while I personally feel that labels are important in that they give children rights to the help and therapy that will benefit them and enrich their lives and functionality, those individual children are people who would appreciate love and understanding, regardless of their label or diagnosis.  Only those things can set them free. 

My posts about special needs are first and foremost to educate because education equals empowerment.  Secondly, they are to share tips and ideas that have been beneficial to our family, in the hopes they will be passed on and prove helpful for someone else.  Lastly, they are for parents and families of those amazing and wonderful special needs children out there.  You are not alone.  Never be ashamed or embarrassed of or for your child.  Never doubt your parental abilities or instincts nor your capacity to love and advocate for your child.  For many of us with very young special needs children, we are our child's voice.  If you have a special needs child or possible special needs child, trust your own instincts and be that voice.  Be loud.  Be persistent.  Be informed.  Find the people that listen, love, and support you and SURROUND yourself with them.  You'll need them and so will your beautiful child.  At times, your heart will break (maybe more than once) but I've found the heart-breaking times can be the most convicting.  Have faith and carry on.  You're stronger than you think.  I'm leaving you with some sites and resources our family has found helpful.  Educate yourself, then educate those around you.  Our family will thank you for it.

Sensory Processing Disorder

Autism Spectrum Disorder

Childhood Apraxia of Speech

The Mayo Clinic (This a good place to research symptoms of various disorders or delays.  Reliable and concise.)

Developmental Milestones

"Red Flag" Early Intervention Guide (This page is a government resource out of Australia and is a great and easy-to-read chart of 'red flag' developmental issues.)

The Out-of-Sync Child by Carol Stock Kranowitz, M.A.

Don't forget to take advantage of the most valuable resource out there: people!  Talk with your doctor, call your local coordinator for Early Intervention, call a friend, have lunch with someone who's going through or has gone through  something similar, keep your family on speed dial, and use social media (it's a great resource to find support groups, as well as stay connected with friends who understand).  Most importantly, love your child and never give up.