Archive for the ‘parenting’ Category

It Really Does Take a Village

March 29, 2010

I was quite saddened to read a  blog post brought to my attention lately.  The blogger, Smockity Frocks, judges a four-year-old-girl and her grandmother on an afternoon at the library. (Google docs version of the original post here.) The story has autism written all over it, and the comments that ensued had me growing rather irritated.  The blog has since been removed, and she has now posted an apology. (Thank you!)

I’ve spent a few days mulling over my feelings on this blog and it’s responses.  My thoughts were everywhere, ranging from if I couldn’t get a good christian woman’s help or sympathy I’m really doomed in this society, and wondering just what kind of good christian woman she really is, to just being immensely saddened at how  my son and the parenting style I am forced to use will be viewed and judged by everyone I encounter.  I’ve often bolstered myself by saying it’s not my fault society doesn’t understand us, its societies’ problem for being unable to embrace our differences and gifts.  But it hurts. People will only see the negative and not realize just how much work it took to even be there and not having a total meltdown.  So what do we do?   I don’t know.  Even Autism Awareness doesn’t seem to be working, as one of the comments on that blog misquoting in context Temple Grandin ‘s comments about teaching polite behavior demonstrates.  Let’s not forget that at four, Ms. Grandin didn’t speak, was prone to tantrums, liked ripping things and stimmed.  Yes, she learned social behavior, but not by 4, and not without infraction.

We have to teach our kids to be social, but out in society!  Out in public the assaults on their nervous system is so intensified, that even though we have talked about it at home and in the car it’s not as effective as actual practice.  I see myself, hopefully, one day to the point of the Grandmother and the “coddled” little girl at the library. Discussing something as abstract as patience with my son, and while maybe not at the level to appease the snippity, knowing how far we’ve come from the days when every public outing ended in tears, running and screaming.

Also, the blog reminded me how we’ve been treated in public before.  I’ll share the story of two  nurses, because you would think they would be aware of autism and other delays in children.  Both stories happened just prior to receiving my son’s diagnosis.

The Tale of Two Nurses

It was my son’s two-year well-baby check up, only he wasn’t very well.  He had yet another double ear infection that day.  He also hated going to the doctor, in my mind, learned behavior from the surgery he had when he was just a bit over a year old.  By the end of the visit, he was beyond control.  The assembly line medical care provided by the military clinic resulting not in patience but forcefully restraining my son as to get the exam done in the alloted time.  As he had the ear infections, we couldn’t just leave after, but had to wait for the pharmacy at the clinic to get his medication, and I needed to schedule a follow-up.  My son was so out of control I couldn’t hold or soothe him.  He hit and bit  and wiggled and kicked.  I held his arm while he screamed and tried to go boneless to slip from my grasp.  I did happen to notice that running seemed to soothe him, and since nothing else was working, I gave in and let him do a few laps.  (In hindsight, this was vestibular input, probably even more out of whack due to his ear infection).  At this point a nurse came up to me and told me I had to get him under control or she would report me to patient administration and have us barred from the building.  I was about at my wit’s end, had a rude retort for her and then locked my son and myself into one of the private bathrooms used for obtaining samples and had a good long cry.  When I came out, the patient advocate was there along with a man in uniform who helped us get through getting the medicine so we could leave.

Just a few weeks later my son had to be examined by a orthopaedist.  Only this time he started his meltdown the moment we entered the building.  I was trying to juggle soothing and distracting him while filling out the patient intake forms.  Only this time a nurse came out after a few minutes of watching me struggle.  She spoke in a very friendly and soothing voice to my son and helped distract him so I  could do the paperwork.  Everything about the entire visit went more smoothly at that point, and it just took a little compassion and help as opposed to harsh judgements.  A few weeks later, we did receive the autism diagnosis, and I have since learned coping and parenting skills but even that is not perfect.  When other parents and adults step up to help it makes a big difference, both for my son and me.  I may try my hardest, but I’m still just a single mom who needs help.


Updates Blog

February 2, 2010

I was reading through my blog last night, and realized that I had some updates to share with everyone.  So here  goes.

Genetics testing revealed no known genetic markers for Cade’s autism.  However, it was very comforting to find out that if I do decide to have another child one day, that I am at no higher risk to have another spectrum child than is the general population.

The biggest gain from the psychology courses I tortured myself with last semester were from my Exceptional Children class.  Now I had already gone through the processes of writing an Individualized Family Service Plan (IFSP) and I had just completed stage 1 of his Individualized Education Plan (IEP), but this class gave me further insight into the law, what equality for exceptional children means, and programs that have shown success in the schools.  Hopefully I never have to fully utilize this information, as I now have a wonderful IEP team.  Again, kudos to his chair for being on the ball with the year-round autism classroom (5 slots total, just to give perspective on how coveted this class is).  I visit with the new teacher next Monday on February 8th.

We have a great new toy!  My brother, who has long worked with autistic and special needs children, sent him a Bilibo:

Doesn’t seem like much but it’s a chair, a rocker,a stool, a bucket, an oversized hat to play peek-a-boo with, a cave for toys, it’s sensory and imaginative play in a simple design.  Cade likes to put it over his head and then chants “Where’s Tade?” (his way of saying Cade) then rips it off dramatically and screeches with laughter.  He also used it to get to my coke I had set on the counter out of his way! 

We’re continuing to see great progress on the magnesium and B6 supplements.  Cade’s speech therapist noticed his changes immediately.  She commented that he seems to be absorbing so much more.  At one point, he was looking around the room and taking everything in, and she said that it was as if he we really seeing the room for the first time.  Now that’s a big difference!  I then filled her in that he had started a new supplement and she got the details for her nephew with autism, as she was so impressed with the differences in Cade.

I have some peace on the direction of interventions we are taking.  Not going to add anything new in until behavior therapy starts.  He’s still adjusting to the magnesium and I want to document his gains to see what’s working.    After that, I’m thinking of trying another supplement that’s supposed to help with language, L-Carnosine. You can find the study here:

I still dream of Captola’s house, but I usually feel peaceful when I wake.

Things I Wish I Could Have Known

January 28, 2010

ScienceDaily (Jan. 27, 2010) — Children as young as five months old will follow the gaze of an adult towards an object and engage in joint attention, according to research funded by the Wellcome Trust and the Medical Research Council. The findings, published January 26 in the Royal Society’s journal Biology Letters, suggest that the human brain develops this important social skill surprisingly early in infancy.

Joint attention — where two people share attention to the same object — is a vital human social skill necessary for many types of human behaviour such as teaching, collaboration, and language learning. Impairments in this skill are one of the earliest signs of autism.

Dr Tobias Grossmann and Professor Mark Johnson from Birkbeck, University of London, used a technique known as ‘near infrared spectroscopy’ (NIRS) to examine which areas of an infant’s brain are activated when paying joint attention to an object.

NIRS, an optical brain imaging technique which involves measuring the blood flow associated with brain activation, is well-suited to study freely-behaving infants. With this non-invasive technique, near-infrared light travels from sources on a sensor pad located on the head, through the skin, skull and underlying brain tissue, and is then detected by sensitive detectors on the same sensor pad.

In the experiment, conducted in Birkbeck’s Babylab, the babies were shown the computer-animated image of an adult’s face. The adult would make eye contact with the baby, raise her eyebrows and smile, glance towards an object at her side, back to the baby and then finally turn her head to face the object. In the control conditions, the adult would look away from the object or would look at the object without making eye contact with the baby.

The researchers found that only when the babies engaged in joint attention with the adult, they used a specific region of their brain known as the left prefrontal cortex — an area to the front of the brain involved in complex cognitive and social behaviours.

“Infants engaged in joint attention use a similar region of their brain as adults do,” says Dr Grossmann, a Sir Henry Wellcome Postdoctoral Fellow. “Our study suggests that the infants are tuned to sharing attention with other humans much earlier than previously thought. This may be a vital basis for the infant’s social development and learning.”

“In the future this approach could be used to assess individual differences in infants’ responses to joint attention and might, in combination with other measures, serve as a marker that can help with an early identification of infants at risk for autism.”

Journal Reference:

1. Grossmann T and Johnson MH. Selective prefrontal cortex responses to joint attention in early infancy. Biol Lett., 2010

Cade never demonstrated joint attention as an infant, and actually it is a struggle for us even now that he is over three years old.  Add this to my breastfeeding issues, and Cade’s issues with lack of constant movement, and his aversion to groups of people and I see the signs of autism spectrum disorder very very young.  Very young as in the hospital immediately following his birth.

I don’t really know that much earlier detection would have significantly helped him, but it would have helped me tremendously!  As most people are, I was woefully ignorant as to what autism really is.  I was also a first time mother, who had no other experiences to draw from.  I suffered  so much anxiety, stress and depression over my perceived inadequacies as a mother.  Not to mention just the difficulties of raising an ASD child on my own, especially without the knowledge of his true issues.

The more I learn about Autism the more I find peace with myself over the struggles of raising Cade.  But there is more.  I wish the pediatrician had known more, I trusted him.   I wish my parenting classes had included a section on autism so I could have recognized the signs.  As in a previous blog, I wish lactation consultants had been aware of sensory issues.  All my wishes point to one thing, there is a definite need for education at all levels.  We have to make this happen.  I think I smell a good letter to my senator!  Spread the word.

What is enough?

January 23, 2010

I’ve been struggling the past couple weeks with finding a good mix between too little or too much interventions for my son.  On one hand I understand doing everything in your power, but on the other hand, I just want my son to be happy.  I also understand that early interventions are best. But I think a  huge part of being a happy pre-schooler is just having free open time just to be who he’ll be and play.  I recently saw a television program following a family through the journey to find working interventions.  Honestly, as I watched this story unfold on television, the thing that stood out in my mind the most, was poor kid, he just seems so poked and prodded.  How can one tell which intervention is working when you’re doing a dozen or so at once?  It just felt so invasive to me.

On the other hand, those offering well-meaning advise often makes me feel inadequate as a parent.  No I’m not yet doing bio-med interventions.  I haven’t read all the best books yet. I can’t afford developmental therapy right now.  But I’m not sticking my head in the sand.  I just have my own philosphy of how to implement things.  In the past Eight months we’ve added in speech therapy, occupational therapy, full-time preschool, a father moving out of state, and a toy overhaul.  It may not seem like much but I like to observe my son and see how he does with each change and allow time to adjust.    I started with a very happy toddler, and I don’t want to change that because at age two-and-a-half he received the label of autism.

Everything  isn’t perfect, we go through phases where he stims more, or shows physical frustration with crashing or headbutting.  He still cries at occupational therapy. He has regressed to eating with his hands again.  Even though it’s not perfect, I’m really happy with the progress he has made, especially socially.   He has gone from avoiding other kids, to playing side-by-side to actively engaging them in play. He keeps adding words to his vocabulary, and has started putting two words together more often.  I’m not sure where we’ll go next, or how long it will take for me to observe if the intervention is working.  We’re still working out a good sensory diet, and this week I’ve stared therapeutic brushing at home, along with essential oil massages.

I’m struggling between recovery and acceptance.   The bad thing is that part of me believes in both.

Sensory Processing Disorder and Toys, Correlation or Causation?

January 14, 2010

Now, I’m obviously not a scientist, nor have I researched this completely.  Just tossing out an observation I’ve made recently.  Is it just me or does the prevelence of sensory issues seem correlated with all the added bells and whistles on toys?  I’ve shopped for good sensory toys, and I’m surprised at how often I find myself going back to good old-fashioned toys and staying away from today’s gadgets.

Today’s mainstream toys seem designed to ensnare the senses and not stimulate them.  They enrapture children rather than encourage imagination. Play seems less exploration and more entertaining.   This would be ok if play was just unwinding, but to a child, play is work.  The work of growing and learning.  While children grow so does their nervous systems.  With TV and video games and hi-tech toys are we stunting our children for normal sensory development?

Some great toy recommendations from me, the mother of Cade, autistic 3-year-old:

Rubber, bean filled reptile toys found in the discount toys section of target.

spinning tops, my son loves to watch these go round and round.

bucket o wooden blocks, found anywhere, most recently at big lots for 7 dollars by me.

Bowling games, I love the one we have above, different textures, sounds and of course, the fun of crashing the ball into the pins!

good old-fashioned play dough.

stuffed animals of different textures and types.

Just a few, if you would like more recommendations by me, I’d be happy to tell you some of our other favorite, sensory inducing toys!

People With Autism Can Learn!!

November 22, 2009

One of my first concerns over my son displayed as an infant.  He under no circumstances would tolerate doctors or nurses poking and prodding at him.  I talked with my sister-in-law, who happens to work with children and autistic children for some advice.  She suggested desensitizing him.  Lots of roleplay, books and videos. 

I bought a doctor’s kit and we proceeded to examine first every stuffed animal in the house.  Then he examined me, then I him.  At the doctor’s office, I would ask to be examined first, and I would smile and repeat about how helpful doctors and nurses were.  At my appointments, I would ask the doctor (and she is wonderful) to talk through the exam, and then to give my son a mini-exam.  We got books at the library, then the Doctor Calliou video.  The results have been great.

We still have anxiety at doctor’s appointments, but if they take my suggestions and work in a certain order, things get done!  If the medical professional is relaxed and kind, takes things slow, they will get the exam done.  What irks me is the people who are amazed that I can get my son through a doctor’s exam the way I do.  Well, it doesn’t irk me until they display disbelief more than once. 

Just this week I had a nurse practitioner seem almost disbelieving that my son had autism because he allowed her to look in his ears.  I explained we had done quite a bit of roleplay and work to get him to that point.  She didn’t seem to care much, then still proceeded to say how odd it was he allowed the exam.  I got irritated.  The tone wasn’t amazement at how he had progressed, but more accusatory that my son didn’t have autism.  She kept saying he was better than most three-year olds.  But honestly, how many other three-year olds have parents who spend HOURS teaching them how to behave at the doctor’s office.  I felt like asking her, “does he look at you?”  “Is he talking to either of us?”  “Do you see him fidgeting with his hands?”

He behaves in the doctor because I found a way to make it work.  And it was work, lots of it.  We did desensitization, roleplay, finding routines and order of business that works.  So I really resent it when I come in, explain he’s autistic, and suggest the way the exam will work best,  and then get treated with disbelief. 

I’m proud of my son, and myself over the progress we’d made.  Maybe I just wanted a pat on the back instead of disbelief.    But most of all I just want to remind everyone that autistic people can learn!

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!

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.
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.