Tag Archives: Anju Usman

Skylar’s Story-Part 1 (Her Regression in Pictures & a Few Words)

Posted on by under Skylar's Story

I get asked by a lot of people if we saw a regression in Skylar or if she had always shown delays in many areas.  My answer isn’t cut & dry.  Skylar had some motor delays and I believe those were due to the birth trauma she had.  She sat up right on schedule.  She didn’t crawl in a traditional sense.  The best way to describe her crawling was “scoot swimming”.  She pushed off with her back legs and pulled with her arms.  She looked like she was doing the breast stroke on the floor.  She didn’t walk until she was 15 months.  Even though her motor skills were somewhat delayed, her language developed early on and she said many clear words and 2-3 word combos.  She said: thank you, please, more milk, my ball, mommy, daddy, Becca, baby, grandma, etc.  The best way to describe the changes we saw in Skylar is to show you in pictures.

Skylar was an extremely happy baby!  She had great eye contact.

She also loved to snuggle and be held.

Doesn’t Chris look like a teenager in the picture below?

She was so bubbly and laughed all the time!  We used to joke that her personality was as crazy as her hair!

She would play in this playhouse for hours.  I loved listening to her talk and pretend to pour our dog Rex his favorite tea.

Then things started to change.  She was extremely unhappy and stopped using words.  She stopped smiling.

She lost all eye contact.

It is hard to explain the shift that took place in her.  The best way I can describe it is that she lost that “gleam” in her eyes!

While all the other kids were upstairs playing together with their new toys from Christmas, Skylar played by herself.  She played with this train for hours on end in my parent’s basement.  She would start & stop the train over & over & over.

No amount of hollering her name or waving things could get her to look at a camera.

She did not like to play with other children.  But she would play with my niece, Becca.

She seemed to be trapped in her own little world.  I so longed to know what she was thinking.  I just wished she could answer me:  “Are you sad?  Are you lonely?  Are you happy?  Are you confused?  Are you hurt?  What’s wrong?  Please talk to me!”

As years went by we saw improvement.  More hugs.

More smiles.

And improved eye contact.

It is tough for me to look at the pictures of Skylar’s regression.  However, as I look at these pictures, I see the tremendous progress she has made over the past 10 years & I am SO encouraged.  She has come such a long way!  She’s doing things that her diagnosing doctor said she would never do.  Here she is competing in her school spelling bee just a few weeks ago.

And singing the solo in her Christmas concert this year.

There are so many people who we know are part of the tremendous progress she has made, including this woman, whom I wrote about here.

And these people , who have never given up on her & have been with us EVERY step of the way.  We could not have gotten through this without our family!

And last, but certainly not least…YOU!  We are so thankful for all the support, love, encouragement and prayers that we have gotten from so many of you.

It’s been a long and tough 10 years, but I can’t wait to see all the things that this sweet girl is going to accomplish in the next 10!

Thanks for walking this road with us!

And for those of you who are just starting to walk this journey or are even a few years into it, my advice for you is this:  “Never, ever give up!  Don’t let anyone tell you what your child can or can’t do!  Also, pull out your camera and document your journey.  I am so glad that even during a lot of sad & stressful times, that I took pictures.  When I feel discouraged all I have to do is pull up these pictures and see how far we have come!

This is one big reason that I do Project Life.  I love documenting our every day and seeing her accomplishments and her progress.  You can read about what Project Life is here.

Make each day great!

JuJu

My Response to the Investigation of Dr. Anju Usman!

Posted on by under Everyday

The past few days I have seen a lot of links on Facebook and Twitter regarding a lawsuit that was filed against a well known autism doctor, Dr. Anju Usman.  As my husband can attest, the comments and the “likes” on Facebook pages referencing these articles have really bothered me.  What do people “like” about this recent article?  Do they like that this doctor is being sued?  I didn’t want to respond out of anger or emotion.  I wanted to read the current article as well as previous articles before I shared my response.  Let me be clear.  I am not bothered by those individuals who shared the link to this article.  I think it is important that we share information with one another.  What bothers me are the negative responses about a doctor that the people making the comments don’t know.

The article that appeared in The Chicago Tribune was, in my opinion, very poorly written.  The reporter presented a very one-sided argument and did not appear to have done much research on the situation.  It appears that the reporter took one man’s opinion and turned it into a “smear article”.  After I read the article, it was clear to me that Dr. Usman had been dragged into a really nasty custody dispute.  This article accuses her of being overly agressive in her treatments and promising a “cure” for autism.  This article makes her out to be a monster that preys on families that have a child with autism in order to make more money.

Well, I’m here to tell you that is not true!  You see, I know Dr. Usman as she has been Skylar’s D.A.N. physician for the past 8 years.  Dr. Usman is a phenomenal doctor.  I have no doubt that she genuinely cares for Skylar and our entire family.  She has laughed with us, cried with us, and shared MANY successes with us!

Let me give a little history on how we found Dr. Usman.  After we moved to Ohio in 2002 we started seeing a D.A.N physician in Cleveland.  After a phone consultation and 2 face to face meetings it was clear to us that he was not a good fit for our family.  I never once believed that he cared about Skylar.  I remember leaving his office saying “What did we just pay for?”  The following spring I traveled to Northern Virginia for the annual D.A.N. conference.  It was at this conference that I first heard Dr. Usman speak.  Her oldest daughter had recently died from a severe peanut allergy and the passion in which she spoke of her patients was amazing.  I called my husband on a break and told him that I had found a new D.A.N. physician for Skylar.  After returning home I did quite a bit of research on Dr. Usman.  I was part of several autism message boards and when I asked about her I received a ton of  responses ALL which were glowing recommendations.  Not one person had anything negative to say.  I also read anything I could get my hands on in regards to a biomedical approach to treating autism. We had already implemented the Gluten/Casein Free Diet and she had shown tremendous improvement.  Skylar was also already in an early intervention preschool & weekly physical/occupational/& speech therapies.

Our first visit with Dr. Usman was great.  She immediately sat on the floor with Skylar and interacted with her.  What I loved was that she spoke “to Skylar”, not just “about Skylar”.  We left her office with a treatment plan of various supplements and lab work that we would have done at home, but we also left with hope.  Dr. Usman made no promises of a cure.  She made no guarantees that any of the supplements would help, but we were willing to try different supplements and treatments if they weren’t harmful.

We have tried lots of different supplements over the past 8 years.  Some of the supplements Skylar currently takes she has been on for a long time, others are more recent additions.  If we don’t see any improvement in labs or specific behaviors Dr. Usman is the first to say that there is not a need for her to continue with that supplement.  Dr. Usman also talks to us about what she thinks could possibly help Skylar and WE make the decision as to whether or not we think Skylar should try it.  Dr. Usman has NEVER pressured us to try any treatment.  She has always been extremely cautious and I have no doubt that she has Skylar’s best interest at heart.

So now that you know my thoughts on Dr. Usman, I’d like to share my thoughts on some of the comments that people have made against her.   I was amazed at the number of people who commented about certain treatments that clearly had not researched the treatments and just wanted to spew negative thoughts in order to “fuel the fire”.  Below are a couple of the comments that people made (in italics) and my response.

I have two beautiful chldren (girls) who have Autism.  One of the things that bothers me more than anything is parents not accepting their child. 

Really?  I made my feelings pretty clear in this post about the fact that I accept my child for who and what she is, but I won’t ever stop trying to help her be the best Skylar she can be.  The lady above went on to say that parents who do biomedical treatments don’t love and accept their kids.  She “accepts” her daughters who have autism yet she still continues to send them to school, take them to therapy, and have them treated and medicated by a traditional pediatrician.  If she truly “accepted” her children as they are, why would any of this be necessary?  It seems to me that what she doesn’t accept is that there are parents who want to go above and beyond traditional methods to help their child.  When I read her full comments (and believe me there were lots of them) I didn’t see acceptance; I saw nothing but judgement!

I can’t believe that parents are subjecting their children to horrible and harmful procedures such as hyperbaric treatments.  To put your child into a pressurized tube in order to give them more oxygen is just pure torture! 

Now that I have stopped hysterically laughing I can address this.  This is one of those comments that just prove that people speak without thinking.

I’m amazed at how people can make blanket statements without ever doing any research into what they are talking about.  This is clearly the case with the comment above.  You can google “autism” and “hyperbaric chamber” and come up with countless stories from families who have utilized this treatment.  There are also many medical journals that have reported positive results in children with autism.   We started researching Hyperbaric Oxygen Therapy (HBOT) years ago.

In fact, Dr. Usman was not the only doctor to mention HBOT treatment for Skylar.  One of Skylar’s neurologists in Ohio asked us one day:

“Has Skylar’s specialist ever mentioned HBOT?  I think she would be a REALLY great candidate for that!”

Dayton Children’s Hospital was conducting a study at the time for children with Cerebral Palsy and although Skylar was not a candidate for the study, the neurologist encouraged us to look into it.  So, clearly we did not seek one opinion on the matter.  We did a “test dive” at Dr. Usman’s office a couple of years ago and Skylar did really well, but we knew that it was not something we could afford at the time.  After YEARS of researching, discussing, and praying about this form of treatment, we proceeded with purchasing a chamber this summer.  We did not purchase our chamber from Dr. Usman’s office so anyone who claims that she profited from our purchase is totally mistaken.

Also, HBOT therapy is not painful AT ALL.  Both Chris and I have been in the chamber with her.  For those of you who don’t know Skylar, she is totally verbal.  She also tends to over exaggerate if she is in pain or feeling bad.  She has never once complained about being in the chamber.  In fact, she comes to us with her cup of water, snack, and the iPad and says “I’m ready to get into the chamber!”  This is clearly not torturing her.  She has completed 50 hours of treatment and the changes we have seen in her are remarkable!  Her language skills have really improved.  In the past month she has communicated with us like she has never done before.  I will share these 4 conversations in a post this next week.  They are nothing short of amazing.  The most recent conversation/amazing thought process that happened occured during our trip to Albuquerque last week and it was a conversation that Skylar had with one of her former school teachers.  She was amazed by the thoughts that Skylar shared and she reported that she had never had a conversation like that with Skylar before.

We have SEEN tremendous improvements in Skylar’s language, behaviors, and overall health and well-being since we’ve been taking her to see Dr. Usman.  Coincidence?  Nope!  Don’t believe in that!

What I don’t understand is why people have such a hard time accepting those of us who choose to utilize biomedical treatments for our children.  Our family and friends have always been very accepting and non-judgemental.  I know it is because they have SEEN the improvements in Skylar.  I don’t judge parents who choose only to utilize traditional treatments, so why must they judge me?

This is something that we CHOOSE to do!  Nothing has been forced upon us.  It is truly unfortunate that because of one complaint by a father who claims that his son has been harmed, we are at risk of losing wonderful doctors who want to help children with autism.

One thing I have learned since starting this blog is that the autism community is really divided!  There are those who are anti-vaccine & those who are not.  There are those who love Autism Speaks & those that don’t.  There are those who support each other & those who bad mouth others who are speaking out, trying to make a difference.  There are those who want to help their child in any way they can & those who keep shouting “accept my child the way they are because they aren’t broken!”  Don’t we have enough difficulties as it is in our world already?  Do we really need to be bashing one another?

I think not!

JuJu

EDITED TO ADD:

*I was nominated for one of Babble’s Top Autism Spectrum Blogs.  I’m totally honored by this.  If you read my blog and you have found it helpful I would appreciate your vote.  I am currently in the 20′s.  You can click here and search for I Am JuJu, then click on the “I Like This” icon.  I believe you can only vote for one blog per computer/device. Thank you so much for your support!  I love sharing our journey with others and I truly hope that it brings hope and understanding regarding Autism.*