A Whole New World…Again.

It’s been far too long since my last post, so I have a lot of catching up to do (well, only since last March…LOL). Josephine has celebrated 2 birthdays (she is now 6 years old!) and has moved up to 1st grade! She has gained 8 pounds in ONE YEAR (she averages a weight gain of 4 pounds per year) and grew 2 1/2 inches! Josephine is FULLY POTTY TRAINED before 6 years old (I was certain we wouldn’t start UNTIL 6, let alone be DONE BY 6)!!!!! Major milestones for our little gal and I have been savoring every moment. Josephine's 6th Birthday!

Josephine’s cognitive skills have greatly improved – she can tell us with words what she wants (at least half of the time, but there is an occasional grunt); she is lovingly responsive to people she knows with spontaneous hugs, kisses and the random “I love you”; she is walking well (minus a few accidents from tripping over her left foot, which turns in quite a bit); she sings and dances; she loves dressing up as a princess; Our Sleeping Beautyshe even loves playing with dolls – she dresses, undresses (her favorite part), feeds, puts to sleep; you name it, she does it!




But now, we are moving on to the next part of Josephine’s journey.

As you know from my past posts, Josephine’s behavior has been out of control. Her meltdowns last anywhere from 30 minutes to 4 hours. There is no rhyme or reason as to why they start and no rhyme or reason as to why they end. As I always say, my girl is predictably unpredictable.

Josephine has always had sleeping issues as well and not knowing how to fix that, we have been walking around at 2:00 AM like zombies, handling random meltdowns.

After meeting with an incredible Physiatrist, Dr. JenFu Cheng from Childrens’ Specialized Hospital in Mountainside, NJ (http://www.childrens-specialized.org/Physician/Physician-Details.aspx?number=89), he strongly suggested meeting with a Neurodevelopmental Pediatrician that specializes in neurodevelopmental behavior not related to seizures and seizure disorders.

In May 2014, we met with Dr. Malia Beckwith at Childrens’ Specialized Hospital (http://www.childrens-specialized.org/Physician/Physician-Details.aspx?number=81) and finally had some answers as to why Josephine’s sleep and behavior were out of control.

Josephine has officially been diagnosed with Autism Spectrum Disorder. This diagnosis threw me for a loop. We have become part of new world, a world I never saw myself in.

For so many years, I felt disappointment that rare chromosome disorder research is overshadowed by Autism awareness and research. For many years, I said doctors needed to check for disorders OTHER THAN Autism because many times chromosome disorders can be masked as Autism. Yet, last fall, I questioned if my own daughter DID, in fact, have Autism. We had her evaluated by an OT for sensory issues and he didn’t see “typical” Autism, although he cannot diagnose anything. We went to the school district to add more OT sessions, inside and outside of school and were told since her behaviors weren’t happening at school, the district would only approve one more OT session in school only. No outside sessions. My heart broke into pieces, but I pressed on, trying to figure out the next step.

Now, many of you may be shocked by this new diagnosis because of what you think is Autism. Yes, Josephine smiles. Josephine plays. Josephine interacts. But Autism is NOT just about the social piece. It is so much more and I don’t understand it all. What I can tell you is out of all of the items on the list to diagnose Autism, Josephine aced the test, all but two of the items. This is one test I didn’t need her to pass. To pass this test meant my little girl got to add another disorder to her list.

The positive part of this, though, is the fact that she finally will get the help she needs to help with her behaviors and her sleep.

In May 2014, we started giving Josephine Tenex, which helps control impulses in kids with ADHD. Tenex has been a great help to toning down her meltdowns and we can actually bring her back to reality in a faster time than before. It’s funny because I often catch myself asking if she needs to be on the Tenex since her behaviors seem to have improved. Then I catch myself again and say, “Duh, it’s BECAUSE of the Tenex that she is behaving better”.

We have now started in home ABA , which is abbreviated for Applied Behavior Analysis (http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba). Josephine has 3 hour daily therapy sessions – that’s 3 hours a day, 7 days a week. Through this therapy, it is the hope that we can unlock the secrets to controlling the OCD, anxiety and melting frustrations that happen daily, multiple times a day. It’s a very slow process that requires a lot of detailed data collecting, observation and pushing beyond her comfort zone.

Our next issue is sleep…zzzzzzzzz. Oops, sorry…dozed off there for a minute! But that’s a whole other topic for another post.

For now, we are ready to start the tour of our new world and welcome anyone to join in! It’s not easy, it’s not what we expected, but it’s what we have. I will always be thankful for these struggles and these experiences. I have learned to truly appreciate what matters most in life.