Tuesday, November 9, 2010

WHAT IS PDD-NOS?

11:29AM


Good morning!  I wanted to blog today and provide a bit of information about PDD-NOS, which is one of the diagnosis Aaediin was labeled as to having.  I know when i mention PDD-NOS to many people they are in question as to what it is... Hey, I was in question myself - even after the diagnosis... So, to save everyone trouble, I'll provide it here:

Courtesy of Autism Speaks (http://www.autismspeaks.org/navigating/pdd_nos.php):
What is PDD-NOS?
Pervasive Developmental Disorder - Not Otherwise Specified, or PDD-NOS, for short, is a condition on the spectrum that has those with it exhibiting some, but not all, of the symptoms associated with classic autism. That can include difficulty socializing with others, repetitive behaviors, and heightened sensitivities to certain stimuli.

How it's similar to classic autism
Those with PDD-NOS behave like those with classic autism in many ways. First, they are all different (meaning one person with PDD-NOS doesn't act exactly like another; the same holds true for classic autism). When interacting with others, they may appear unemotional or unable to speak, they could have trouble holding eye contact, or they may have trouble transitioning quickly from one activity to the next.

How diagnosis differs
Those with PDD-NOS are different from others on the spectrum in one specific way: While they may exhibit some symptoms of those conditions, they don't fit the bill closely enough to fully satisfy all criteria set by the experts. Perhaps they started having difficulties at a much later age than others on the spectrum. (According to the National Dissemination Center for Children with Disabilities, they are often diagnosed between the ages of 3 and 4 years old.) Or they may have the same challenges — for example, they may be oversensitive to their surroundings — but not to the extreme that others on the spectrum do.

Consequently, those with PDD-NOS are sometimes thought to have a "milder" form of autism, though this may not be technically true. One symptom may be minor, while another may be worse.

What To Do About It

Treatments
According to the Yale Developmental Disabilities Clinic, treating children with PDD-NOS could prove tricky: Sometimes, they may not get the help they need as quickly as those whose behavioral patterns are more clearly definable as autistic. Healthcare providers may not provide a diagnosis of PDD-NOS until after they've considered all the other "types" of autism; in short, they may arrive at their conclusion after essentially a process of elimination.

As with other conditions, it takes a village of doctors, psychologists, teachers, therapists, and family members to arrive at an action plan that would work best for someone with PDD-NOS. A "one-size-fits-all" approach usually doesn't work: A multi-pronged regimen may be the most advisable. These treatments could include:
  • Various behavioral regimens, including play therapy, Applied Behavior Analysis (ABA), sensory integration therapy, and more
  • Medications, including anti-depressants
  • Social skills training, which teaches children how to interact with their peers for specific situations
  • Alternative therapies such as martial arts therapy, wherein they flex their muscles literally and figuratively (they get stronger and learn how to function in a group setting); music therapy, which has kids learning how to communicate with the help of songs; or facilitated communication, in which children are taught to use computers or other equipment to make their thoughts known, especially if they have trouble expressing themselves verbally. (It supposedly is helpful to some children with PDD-NOS, says the National Dissemination Center for Children with Disabilities.)

How to Cope
Like other parents with children on the spectrum, you will face many challenges, starting with the incomprehension and insensitivity of others unfamiliar with your situation. They may think your child is "misbehaving" and, consequently, deem you a parent unable to "control" him. This may be especially true because PDD-NOS kids don't fit into the more easily identifiable forms of autism spectrum disorders. Ignorance can bring out the worst in others, and sometimes, when they're not privy to your child's issues (or simply don't understand them or won't accept the diagnosis, as happens in some families), they may be more judgmental.

That's why it's important to surround yourselves with friends, family members, teachers and healthcare providers whom you trust. Be sure that the lines of communication with and among them are clear; you will be relying on them through the many ups and downs of life with a PDD-NOS child.

If you're the primary caretaker (meaning you spend the most hours with your child), you'll need to make time for yourself, too. Caring for others can be draining, and you won't be able to give much if you don't replenish your own stores of energy and look after your physical, emotional and spiritual needs. Ask your child's healthcare providers for referrals to support groups so you can meet parents of other children on the spectrum; or go online — many parenting Web sites have bulletin boards for children with special needs, and Autism Speaks has online forums as well.

Structure is helpful for children on the spectrum, so take this into consideration when deciding what events to attend or places to go. Preparation is key, so let your child know what to expect before the situation takes place or they reach their destinations. Consistency also helps, so check in with your healthcare team before starting or stopping a regimen.

As children grow older and become more aware of the limitations that their condition has placed upon them, it may be helpful for them to receive counseling with a therapist trained in dealing with pervasive developmental disorders. As difficult as it is for parents to go through this journey, it's even harder for the children themselves who have to work through their own personal challenges and other people's ignorance as they make their way in the world.

How to Grow With It

Teens & Adults
Adolescence is hard enough for children who aren't on the spectrum, so you can imagine the challenges that teens (and even adults) with PDD-NOS face. They're equally hampered by hormonal fluctuations, but also have to take on the complicated (and sometimes cruel) social habits of their peers even though they don't have the full complement of skills to do so. Dating will be thorny — though some may ignore this rite of passage altogether — and friendships, so simple for young children, may prove to be more daunting. This is why your child may need more support at this stage than ever before, especially as they grow more aware of their own condition. A counselor trained with dealing with teens on the spectrum can help immensely, as will knowing that you're by their side every step of the way as they learn how to navigate a bigger and more complex world.

Long-Term Care
It's difficult to predict how easy — or hard — life will be in the long run for a person with PDD-NOS, as much depends on the severity of his or her symptoms and how he or she reacts to therapies. But if, like many others, the condition is on the "milder" side of the spectrum, your child will likely be able to care for himself or herself while growing older. Marriage and parenting may prove overwhelming for some, though not necessarily for all of those with PDD-NOS. The good news: It's possible to enjoy a full, if complicated, life.


Hope this provides you with a glimpse of what PDD-NOS is.  I took the time to bold out most of the important factors, but there was one thing that really stood out to me.  It was this statement here: As difficult as it is for parents to go through this journey, it's even harder for the children themselves who have to work through their own personal challenges and other people's ignorance as they make their way in the world.  This statement helps remind me that during this battle, I am not in this alone..though at times it may feel like it..Frustrations may rise, patience may fall, but the bigger picture is this:  MY CHILD IS BATTLING THE HARDEST!!!! - and I must make sure that he doesn't feel like he's alone in the fight!!! :)
12:14PM




Monday, November 8, 2010

FROM MILES TO MILESTONES

2:27PM
Once again I said that I would blog "tomorrow" and yet failed to the duty and task.  Did I forget? No.  Was I too busy? Sometimes.  I totally could have blogged - like weeks ago.  LOL.  Well, I'm here now, and that's all that matters.

I do have a picture from Aaediin's therapy session at McDonald's  He did very well.  He even waved at 2 kids and said "HELLO!".  It was a fun day!
AAEDIIN - OCTOBER 11, 2010- @ McDonald's PlayLand


Lately I've been in Birmingham, AL staying with a great friend of mine.  He's definitely helped me with Aaediin - well all of the kids, but the breakthrough and miracle comes with Aaediin.  I really cannot go into details as to what all has been going on, but Aaediin is now a totally different person compared to my last post - which was THE TANTRUM EXPRESS.

THE CUP - We've totally got rid of "THE CUP"... If you're uncertain what "THE CUP" is, be sure to look a few pix I have posted on here.  I'm sure you'll see it in the background or in his hand, but that was basically a crutch, that I am unhappy to say that I didn't mind because it was pacification from the tantrums, outbursts, etc.  I had to be honest with myself, and my dear friend helped me realize that we're not going to get anywhere with it! So, NO MORE CUP!!! He's adjusted very well without it...He drinks great out of water bottles - not so well with regular cups yet, due to his lack of patience, but straws always make things better!

FOOD - As a result of getting rid of the cup, Aaediin is now drinking less beverages, and his appetite has completely opened up.  He's still a bit picky, but he's taking in proteins and is willing to try foods (if I don't look at him with it).  

SPEECH - He still doesn't speak much, but a few days ago, he miraculously responded with "Yes, Sir" when asked if he understood which led me to really see how observant he is and how what we're doing is working.  He also tries to communicate things that he desires and wants, which is a great breakthrough.

TANTRUMS - The tantrums are diminishing.  He hardly cries as much.  If he does, I pull a Nanny911 method..and put him in Time Out.  

Overall, it's still a battle - trying to get through all of this, but I'm blessed that Aaediin is making milestones.  At first, I was thinking that it's going to be so hard to get through all of this, but I see hope and I am claiming POSITIVITY as our End Result!

-3:00PM

If you're a parent with a child with a disability of some sort with a blog, please don't hesitate to contact me, follow me, and/or send me your link to your blog! :) 

Sunday, October 10, 2010

"THE TANTRUM EXPRESS"

Sunday, October 10, 2010 @ 2:26pm EST

As I type this, I hear the sounds of Aaediin screaming...Within each scream I hear "Wow, wow, wow"..."Momma"...and babble.  He's basically fighting what I need for him to do--Take his nap.  Note: I put him to bed at 12:15pm.  He didn't go to sleep, destroyed the bedroom, and somehow made his way out of the bed, slowly crawling and screaming toward me.  I notice he has a dirty diaper, and I question myself, "Was this about the diaper?", "Was it because he was forced to do something that he necessarily did not want to do at the time?", "Was it that he wanted to be near me to feel comfortable?", or "Did he just tire himself out during the tantrum?".  I wish I knew the answer, and just like other mom's with kids with disabilities, especially those affecting them neurologically, we struggle to completely understand and often too, along with the child, get frustrated, defeated, and feel incompetent.

Though Aaediin has provisional autism (mild), he still struggles with communication issues.  It often confuses the H-E-Double Hockey Sticks out of me.  As a parent, I often times have to sit and observe and try to put the pieces of the puzzle together, regardless if the puzzle pieces are missing.  It's now 2:35, the screams went from screams to babbles to sniffling to sighs to SLEEP.

I know it's been like a million years since I blogged, but a lot has gone on during the past month to two (2) months.  Some things are left out to protect the interest of myself and/or others.

FLASHBACKS:
August 23rd - The past 4 years of my life was wiped away from me, and true STRUGGLE began.  I never understood the meaning of that word til this date.  I thought being a single mom was the definition of STRUGGLE til I experience this date and event.  I wanted to throw a tantrum just like Aaediin but was so mentally exhausted, I just passed up the opportunity.
Sept 16th - Psi, my oldest child, only daughter, turned 5 years old.
Sept 20th - We visited a friend of mine.  This visit changed me in so many ways.  You'd think I went off to an island of isolation, but it was, in a sense, pretty close to the island of isolation (minus the palm trees, sand, and water).  It changed my view on life, practices, parenthood, my depression.  Struggle became NON-EXISTENT from that date, and just a word that exists in the dictionary.
Sept 28th - Psi started school, and is recognized as the smartest in her class.  (1.5 month behind schedule and completely home-schooled by me, and comes out on top) - See, we stay-at-home moms do other things than watch soap operas.
Oct 9th - We went to the Early Intervention county site here in Georgia.. It's called Baby's Can't Wait...to try to get Aaediin ready to transition to school on March 19th (his 3rd birthday).

So, during this time, I've been dealing with the "terrible 2" tantrums.  I unsure if it's the PDD-NOS or the fact that Aaediin has developed a bit more of his personality.  This behavior issue hit me around the time of the 23rd of August.  Now he's into everything.  I mean everything, and when things aren't the Aaediin way, he gives it to me - a drop to the floor, kick and scream, and babbles/coos.  

Now, I continue to ponder as to what to do to get him to understand that "NO MEANS NO", "DOORS ARE OFTEN MADE FOR OPENING, BUT MAINLY MADE TO STAY CLOSED" - He loves opening doors, and "STOP CRYING/BE QUIET".  I'm also trying to instill a sense of discipline within Aaediin because I care so much about his well-being.  I cannot be with him 24-7.  I try to teach him, but he listens when he wants, and responds the same way during the process- usually - with a tantrum which brings me to think about the old me.  When I'd be a the mall or grocery store, I'd see kids often time fall out to the floor, scream, and yell... I'd respond within my head, "Oh, that mother needs to find a way to discipline that child."...Now that I'm going through the same thing, I wonder how many of those kids suffered from a disability of some sort.

Well, in the meantime, I guess I'll be pondering all of the questions I've asked, including what the best methods are to handle Aaediin and these brief but horrendous temper tantrums.  Now that he's sleeping, I guess I can continue doing all of the many things to do, and that includes homework.

Tomorrow we have an 11:30 with the Babies Can't Wait Coach.  I'll post details all about it.  Hopefully it'll be smooth sailing and TANTRUM FREE.. :) 
-@ 3:24 pm EST

<3 - Je'Kendra*

If you're a parent with a child with a disability of some sort with a blog, please don't hesitate to contact me, follow me, and/or send me your link to your blog! :)

Monday, August 9, 2010

WELCOME:: (DIAGNOSIS: 20 DAYS AFTER)

WELCOME TO "A IS FOR AAEDIIN, NOT AUTISM"

"They tell me his condition is lifelong.  His inability to communicate, lifelong.  His inability to make eye contact, lifelong.  His inability to make friends, lifelong.  His inability to keep himself safe, lifelong.  His inability to be independent, lifelong.  But you know what's TRULY lifelong? -- 
My determination to prove them wrong!"
-National Autism Association

Aaediin & Me - Summer 2009

Welcome!  My name is Je'Kendra Q. Robinson.  I currently reside in Atlanta, GA.  I am a 25 year old model, youth advocate, Political Science, Pre-Law Student, and a mother of three(3) (Psi (my only girl)-4 going on 5 in Sept., Hunter-3, and Aaediin-2).  Oh, I failed to mention another piece to the Je'Kendra puzzle.  I happen to be going through a much stressed divorce.  

THE BIRTH OF AAEDIIN
Let's rewind a bit.  Five (5) months after having Hunter, I found out I was pregnant again.  My only concern at that point was, "Would this 23 year old be able to handle marriage, a two(2) year old, a one(1) year old, and a newborn all at the same time?".  I convinced myself mentally that I was fearless and could conquer anything.  
Months into my third pregnancy, my marriage took a plunge and began to have a lot of turbulence.  My husband was sent to work out of state and I was left to take care of the kids and handle the third trimester of my pregnancy alone.  That wasn't the only thing I did alone. 

On March 19, 2008, I woke up to labor pains around 9am.  With my husband 3.5 hours away in Tennessee, I notified him most immediately.  Oh, I failed to mention a tornado just hit Atlanta days before; so, streets were closed, traffic was backed up, and it was raining. (Oh, not to mention, I was having a very bad hair day...I mean - BAD, and it was NON-Rain Related.)  I remained in excruciating pain trying to wait on my husband.  Around 12pm, I threw in the towel, and asked my brother-in-law to take me to the hospital.  My husband was still maybe 1 hour away.  I went inside signed paperwork, and asked the secretary if I could go to the bathroom.  I urinated, and just I stood up, BLOOP...my water broke.  Ughh.  So walking back was quite the task... I finally made it back and told my brother-in-law I would be fine.  "I mean...I'm having a baby.. I'm sure I'll be in labor for at least a couple more hours, and my husband should be here by then," I thought to myself.  As he departed, I was moved to a curtain section within triage.  I was then checked to see how far along I was dilated.  I was surprisingly at 7cm, and in a lot of pain.  

I didn't make it to my room til about 20 minutes later.  I received my IV, and was sooo looking forward to an epidural.  Once my IV was inserted, my midwife said I was dilated at 9cm. Of course, I'm freaking out because I was there alone, and no telling when the baby would come or when my husband would arrive...and I was having a natural birth.  I talked this big game when pregnant with my daughter and son that I was going to have a natural birth.  Well, that didn't quite work to well or in my favor.  So, this time, I proudly told everyone that I was getting an epidural, and now look.  I was giving birth naturally.  My midwife was all about natural births anyway.  She instructed me to stand and walk, and when I received a contraction, she wanted me to bear down.  Well. at this point I'm screaming, crying, and scared.  I mean Psi was 9lbs at birth (epidural); Hunter - 8lbs (he, too, epidural).  So, there's no telling what I'm pushing out now, and I have to feel it all natural??? 

Well, after 20 minutes of screaming, clawing (the nurse), and crying, I gave birth to another 8lb baby boy while standing up in the bathroom.  LOL.  I stood, and surely enough they caught him.  The midwife asked the craziest question after it was all done.  "Would you like to cut the cord?"...lol.. You don't even want to know the responses that came to my mind, but I kindly, but in a freaked out way, said, "No Thanks". 

(My husband made it to my room ten (10) minutes later.  Unfortunately, he missed all of the action.)


Aaediin S. Triplett
(Mar 19, 2008: 1 Day Old)


THE SIGNS
Aaediin was by far one (1) of the greatest babies.  His behavior was beyond phenomenon.  He was and still is a very happy child.  At around 10 to 11 months, Aaediin began to babble and say short words like "hi" or "bye".  Then all of a sudden he got quiet, and remained that way.  At eighteen months, still no speech.  My other two(2) kids began speaking at very young ages.  Psi could count to five(5) at ten(10) months.   Hunter knew all of his ABC's at thirteen months.  All I could do was think, "All children develop at their own speeds... like crawling...or walking...He'll come around when he's ready."  Isn't that what we all think???

Because my best friend's niece suffered from delayed speech (among other signs) and was diagnosed with autism, I began to research the developmental disorder.  Aaediin expressed quite a few of the listed signs and symptoms, but I did not want to open up to anyone about my thoughts.  I finally told my sister-in-law what I believed his delay was (Her son (who is 4 months younger than Aaediin) was speaking very great and was well advance...So, we all knew something was wrong, but we never talked or addressed it.).  My son must have autism or some other developmental delay.  Something is wrong. 



At 25 months, Aaediin's pediatrician referred us over to an autism center along with rehabilitation centers.  I never knew that the wait-lists to be seen were so full.  Getting a diagnosis was not as easy as I thought.  We finally got a reply two(2) months later.  We visited Marcus Autism Center of Atlanta and I met a wonderful social worker.  I would list his name, but I haven't gotten the permission to, but anyway. He referred me to various people, places, and programs.  When I met him, I knew right then and there that things were gonna be okay.


(Oh I failed to mention that during this time my husband and I had been separated for quite some time.  His job has him in Texas, and he currently resides there.  Because he took the car, life became extremely tough for me.  One of the greatest photographers, which happens to be a great friend of mine, and his wife extended themselves to help me get from one(1) point to another, food, and etc.  I am so grateful to have them in my life and my kids' lives.  Oh, and one of my "bestest" friends drives all of the way from Snellville to get us from point A to point B when available too.  I am sooo grateful to have these individuals in my life.)


On July 20th, Aaediin met with a developmental psychologist.  After testing, Aaediin was diagnosed with Mixed Receptive Expressive Language Disorder & Pervasive Developmental Disorder-Not Otherwise Specified (PPD-NOS).  

 AAEDIIN (JULY 2010) - AGE 2

I will be documenting our journey through this process.  I hope that our travel can somehow inspire others going through the fight.  I talk to parents almost daily and am definitely motivated.  We'll beat this, and overcome the "norm" and the "statistic".  

(I cannot promise that I'll be on time with postings, but I'll definitely try to write at least 2-3 times per week.  Also, I am a grammar nut; however, I'm not going to really edit these postings.  So, please forgive me for any errors you may catch or see.  :) )

For parents with children with setbacks and developmental disorders.  We can definitely get through this.  I hope that my blog can inspire and inform others.   Stay tuned  I have a lot to say.


AAEDIIN & ME - FALL 2009

Thanks again for reading.
-Je'Kendra*