Absolutely gorgeous

October 31, 2009

My cousin, who is a jewlery designer,  made this pin for me, it’s done with Swarvoski crystal.  I think it’s beautiful.

If anyone would like to order one, I can get you in touch with her.  I told her I was going to show it off.  It’s much better in my opinion than any other autism awareness pin on the market.

P1030187

Family Values

October 22, 2009

I had a debate with a licensed therapist yesterday. I think she was really playing devils advocate here.  We were discussing why family is important. Her view was that families are really just shitty to each other and why do we place such value on them? She further explained it’s not like we can pick them as we pick our friends. But I had a different view and expressed it to her.

To start, I consider culture a societies’ response to dealing with making life livable given their environment. So it follows that many societies deeply engrained with strong family values often come from sustience based living. The family is paramount for survival, because one cannot farm alone. Every society was once at this level. Enter the industrial revolution, grocery stores, pension plans and day cares, adoption, foster parenting,etc.   Family values have as a result deterioted for our  civilization because dependence on the family is no longer paramount for survival, at least not for the majority of your life. But we forget the very young and the very old. I see increased examples of terrible parenting, emotionally neglected children, not to mention the increasing number of divorces that places children in single parent homes, along with all the negatives that comes from that. Children that are with both parents are still often raised by day care centers, taught values through the school system. We outrage over abuses in the systems, chilren who are phsyically mistreated, em111otionally neglected and sometimes even killed at the hands of caregivers who are just doing a job and at times have no emotional investment in these childrens’ well-being.

Adults must scrimp and save and invest in pensions and prepare for the future at the expense of their children because no one will be there when they themselves are old. Now we’ve seen the rise of the nursing home industry and all the disgusting abuses that go along with that. We are raising neglected children who in turn become self-centered adults and neglect the elderly. I can’t help but wonder, what is going to happen to millions of elderly if all these pension plans continue to fail in today’s economy.

When the shit really hits the fan, we go back to our roots, our family. But can Western families really handle the shit? My thoughts? Family values are not just some antiquated or patriarchial cultures’ viewpoints. They provide a strong foundation to society.

Breastfeeding and Sensory Integration

October 16, 2009

Breast is best, and I was on board for breastfeeding long before my son was conceived.  I read every book I could get my hands on.  I could even tell you why algae DHA formulas are bad for babies.  About a day after birth my son started having issues with breastfeeding, one nurse saw that he was completely tongue tied.  I had to do battle with a pediatrician, but I eventually got a frenulectomy done on his tongue (we snipped the extra tissue).  He  did better for a little bit, then was almost failure to thrive again.  My body didn’t like pumping so that wasn’t an option.  I saw a few different lactation consultants, and finally the last one said it was me and had me put on anti-depressant for postpartum.  Let’s face it, I had an incredibly hard time nursing my son.   But it wasn’t  me, my milk supply wasn’t low, I wasn’t depressed, I had a sensory challenged baby, and I feel let down that no one picked up on it.

Maybe I’m too critical, or too optimistic, but I cannot help but wonder if any of these medical professionals  in my life helping with my breastfeeding issues had picked up on his sensory issues  if his development may have differed.  I think  we could have had a sensory diet in place for him since then.  I made it  seven months by the way, just out of sheer stubbornness.  It was grueling having a child who wanted to constantly be on the breast and who bit!  I wasn’t depressed, I was exhausted and could barely leave the house!

I don’t have much else to say on the topic, other than I’ve sort of began a small grass-roots operation to start raising sensory awareness in lactation professionals.  Breastfeeding is a complete sensory experience for an infant, and I can’t help but think that recognizing sensory issues will not only lead to a sensory diet as I mentioned above, but also more mothers succeeding with breastfeeding.  I’ll leave you all with a link I wish I had seen when I was nursing!  http://www.mobimotherhood.org/MM/article-sensory2.aspx

Cowboy and Willis

October 13, 2009

http://www.amazon.com/gp/mpd/permalink/m3QQC41P3HARJV

If you are at all interested in autism, check out the excerpt of this book.  I was in tears.

Putting the Puzzle Together

October 12, 2009

cadepicassoI love the symbol of a puzzle for autism.  Not that I think my son has pieces missing, it’s just that I don’t yet have the full picture and things are being revealed to me the more my son and I learn.  Then I take the knowledge and work with him so we can see through behaviors as to who my son is as a person. I’m feeling like the puzzle of my son is going from a Picasso to a portrait I can understand.  Both beautiful works of art, but one is more tangible for me.

Diagnosis of pdd-nos, this is what the Yale School of Medicine has to say:

“Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) is a ‘subthreshold’ condition in which some – but not all – features of autism or another explicitly identified Pervasive Developmental Disorder are identified. PDD-NOS is often incorrectly referred to as simply “PDD.” The term PDD refers to the class of conditions to which autism belongs. PDD is NOT itself a diagnosis, while PDD-NOS IS a diagnosis. The term Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS; also referred to as “atypical personality development,” “atypical PDD,” or “atypical autism”) is included in DSM-IV to encompass cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met.
It should be emphasized that this ”subthreshold” category is thus defined implicitly, that is, no specific guidelines for diagnosis are provided. While deficits in peer relations and unusual sensitivities are typically noted, social skills are less impaired than in classical autism. The lack of definition(s) for this relatively heterogeneous group of children presents problems for research on this condition. The limited available evidence suggest that children with PDD-NOS probably come to professional attention rather later than is the case with autistic children, and that intellectual deficits are less common.”

When Cade was diagnosed I found it extremely confusing and difficult trying to navigate the spectrum.  Knowledge is power and I was powerless.  PDD-NOS as one can see, being a catchall diagnosis is an enigma in itself.  But in our case, they also said autism.  I was seeking answers in medical guidelines that were a huge umbrella encompassing so many things that it didn’t give any peace of mind or direction for my son.  So I pressed for further evaluations.  I had already had speech, so I requested occupational and genetic (still waiting on the results from the genetics testing, UNC is not an easy place to get into).

Occupational therapy has been a real eye-opener.  I finally have some answers.  I know some of his autistic behaviors and why he does them.  Things like stimming, smearing, being afraid of stickers, jumping all the time, having a high tolerance for pain, and more.  Finally I had tangible goals with practical solutions. I dove in.  He was diagnosed with sensory processing disorder for tactile, vestibular and proprioceptive.  Big words, essentially tactile is  sense of touch.  Vestibular is inner ear;for my son mostly auditory sequencing, but it can relate to sense of balance and spatial awareness as well.  Proprioceptive is how the body relates to itself, and the occupational therapist also said he has low muscle tone.

I also had a fantastic case manager when my son was in the CDSA (North Carolina’s program for exceptional children under 3) who was a nurse.  She was great about answering my questions and providing practical advice and explaining the medical side of it.  She was simply amazing, and I wish I could keep her on speed dial now that I’m on my own coordinating his care and therapy.

I’m diving in by taking three college courses this semester, Exceptional Children, the Psychology of Learning and Development and Developmental Psychology.  It helps to satisfy my need to become expert in whatever I am encountering in my life, and in the case of my son, there is no greater priority.  It’s nice to have the scientific nature of issues and know sort of what is going on with his brain.  But I also find that my real-life connections have been even more helpful in understanding this puzzle. People like Rachael, from Asperger Journeys, have made autism tangible rather than abstract for me to understand.  My son’s speech therapist is another peach, in explaining things tangibly for me with regards to therapeutic listening and auditory sequencing memory disorder. 

cadepuzzleI’m no where near understanding all the pieces I have to work with, but as we fill the corners; more pieces will fall into place.  We will continue working on known issues like speech and sensory, and hopefully like happened with speech, once we got him to break out a bit and talk we could see where the piece for auditory sequencing went.  Had we never encouraged him to talk, we never would have known that he transposes words and phrases.  One day at a time, one more piece at a time, before long I will better understand my son, and that is a journey I am fully on board for!

Miracle Baby

October 9, 2009

After five years and a miscarriage, on my 6th Wedding Anniversary I knew I was pregnant. He had most likely been conceived on his father’s birthday, and finding out on our anniversary was an omen that my miracle baby was to come. I knew I was pregnant before I could even test it, and the very first pregnancy test I did showed a very faint second red line. I called my friend and asked what that meant, and she said, “it means you’re pregnant.” But I still had to double check and got a pack of the digital display pregnancy tests and used them both, just to make sure they both said pregnant! I wonder if even Abraham and Sarah wanted Isaac as much as I wanted Cade.

My phospitalregnancy was healthy and normal until the end, when the chain of events leading to his birth occurred rather rapidly. I went in for a normal 40-week check up without knowing that I was closer to death than ever in my life. His heart rate was crashing, my blood pressure high, they said, let’s get this baby born. They wheeled me dramatically to labor and delivery and then decided to immediately induce. I was so scared, and yet so happy anticipating that everyone would be ok. I didn’t know that in the wee hours of the night I would go in shock, and that in the morning my son would be delivered via c-section. I just knew things were serious, but I figured everything would be fine.

Now, the next day, my miracle baby was born. Miracle in that it took us 5 years to get him, and miracle that he had survived the trauma of childbirth, shock, meconium, cord wrapped around his neck, and a c-section on top of it.
Cade
He grew happy and healthy, and was he ever gorgeous! Very easy going and pleasant little guy. I had very few concerns until he was 2 and still not talking, so I asked for speech therapy. His speech therapist suggested further testing for spectrum issues, and so we went.

A few months later, we received the diagnosis from the state; he was on the spectrum, pdd-nos. I was alone, and started crying, and I remember saying “But this is my miracle baby”. The nurse responded that he still was. And she’s right; he is my miracle baby. And now my miracle baby is on the road to recovering from autism, and I do believe we will recover.

Captola’s House

October 8, 2009

captolaThere is always a best in any category. This includes places where we find our most joy. Mine was my grandmother’s old two-bedroom house in a teeny town in rural Arkansas. Ironically, I never knew it when I could go there. But now that she is passed and the house sold, I realize what it meant to me.

My Grandmother was such an amazingly strong woman. My grandfather had serious mental problems as a result of what happened to him in WWII. He was often non-functioning or just too drunk. They had 9 daughters and lived on a sharecroppers farm in rural Arkansas. If you’ve seen Walk the Line or The Painted House, that’s exactly the area, and the time-frame that my parents were raised. My grandmother worked all day as a seamstress, then came home and worked in the gardens, or the fields, and cooked dinner and cared for the house and raised her 9 daughters. Yet was always kind to everyone, always had love and patience to share. When my grandfather passed of a heart-attack, my grandmother was only 46. She put herself through college, and obtained a teaching certificate age 50, then taught Special Education until she had to retire for health reasons at 65.

Her family consisted of 9 daughters, spouses, 20 grandkids-some with spouses, 15 great-grandkids, with 2 more on the way, my cousin and I were both pregnant when she passed. I did end up losing that baby just a couple weeks after her death, but I think he was sent to be with her, so she wouldn’t be apart from all her family. Even as large as her family was, her funeral was standing room only. The funeral home notified us that they didn’t have room enough for everyone they expected and suggested we move it to the Baptist Church which had far more seating available, and yet people were lined up along the walls in back and up the sides of the aisles.

At her funeral I realized that her love and patience wasn’t just reserved for her family; even though we were an army by ourselves. After the formal part of the funeral was over, the Pastor opened the floor for people to give remembrances of my grandmother. Our whole family was shocked and amazed at these stories about her. One that particularly stands out in my mind is that a very poor girl got an opportunity to attend the University on scholarship, yet her family had nothing to help her with books or spending money. As little as my grandmother had, she sent this girl $20 a month just so she could get those little extras she needed. There were other stories of how she would tutor children for free, or be available to give someone a ride to a doctors appointment or church, never expecting a thing in return. We never knew just how much she was giving to those around us. We knew how much she was giving to us, and I think couldn’t fathom how much more she had to give.

Usually when we would visit, having lived in Michigan at the time, it would be a holiday, and so everyone would be there. The house was full to bursting with family cooking, eating, laughing, playing games, talking and just enjoying each other. A certain smell sticks out in my mind, with so many people there was constant dishes to be washed, and my grandmother always used lemon joy. It this smell I most remember from her home, the way it mixed with the water and the cheap plastic cups we drank from, created the smell I still associate with comfort to this day. (Luckily, I’ve been able to find a scent almost exact in a bath gel).

As wonderful as these family gatherings sound. There is one time that stands out the most. My (now-ex) husband was on his first deployment to Afghanistan in 2002. I didn’t have my house then, and was alone here in NC, so I went to spend some time with her. I got two-weeks with her, just her, not sharing her with the brood. We just existed peacefully together, cooking meals, reading silently, battling at Scrabble (she is the one person who really gave me a run for my money) and talking. I got to learn things about her I never knew. I got to see into her heart, hear her struggles, listen to her life story. It is still the most peaceful time in my life.

As if all this wasn’t enough, there is another reason why her home particularly represents a haven to me. The contrast with my father’s family. My parents never knew how I had suffered sexual abuse at the hands of this family, because I never told them. I remember crying and begging not be made to go, only to be lectured that family is family and I must show them love and respect too. (Later when I was 13 and told my parents about what happened when I was younger, I was never forced to go again). Returning again to Grandmother Curry’s home was always a place of safety.

Now that my life is in turmoil again. My husband’s infidelity and our subsequent divorce, my ongoing health issues, raising an autistic child alone, and being unable to find a job, I’ve been finding myself revisiting my grandmother’s house in my dreams at night. At first she was there, and for a while now she hasn’t been there in the dreams, just the house.

My soul longs for the simple love and acceptance I had there. It longs for the haven it was from my worst nightmares. I want to be as peaceful as it was laying in bed at night at her house, content, listening to the songs of the cicadas as I drifted off to sleep.

But mostly my heart longs for the woman who I have always wanted to emulate.