We have an Autism Diagnosis...

I have always had my suspicions, but no professional had ever really picked up on it.. until now. During our recent developmental evaluation at childrens hospital it was confirmed, we now have a diagnosis of Cognitive Disorder (as a result of his complicated medical history, Anxiety Disorder and Autism Spectrum Disorder (ASD).

Once again I went through the grieving process of the saddness: here we go again..., Denial: he was just having a bad day and has been anxious about school this year...(this part I don't think is much of a denial because he truly IS and since school has been so diffuclt this year I've noticed, regressiond...)anger: why didn't anyone ever pick up on this before,...!  depression? I had a good cry...   Guilt? every hour of everyday...so i was already there and then finally acceptance: The diagnosis doesn't change who he is.  He is still the same quirky little boy I know and love. 

So once I went through that process I am now empowered (for the time being)...  I have increased or his few private therapys, like OT/sensory therapy, start music therapy, we have the home trainer through the school but I am adding ABA tharapy.,,,Oh and Cognitive Behavior Therapy (CBT) to help with anxiety. 

As mentioned in past posts anxiety is not that uncommon for preemies and children with a complicated medical history!  

One thing the ASD diagnosis has done for us is open alot more doors for us.  Apparently a little more "concrete" than the past diagnosis of Neurodevelopmental Disorder.  The school certainly seems to be dealing with him differently in a more positive way. 

If your child has an ASD diagnosis I encourage you to contact your local austim support center and/DDS  there is alot of support and there could be funding for programs like ABA therapy.

Article: Bloodstream Infections in NICU drop...

I was recently contacted by Agency for Healthcare Research and Quality and was asked to share with you this new research.  I'm very excited to hear this.  Especially since my son went through such a difficult time with a blood infection he contracted.  Hope this helps alot of you out there...

 

Intensive Care Units for Newborns See Sharp Drop in Bloodstream Infections

Central line-associated bloodstream infections (CLABSIs) in newborns were reduced by 58 percent in less than a year in hospital neonatal intensive care units (NICUs) participating in an AHRQ patient safety program. Frontline caregivers in 100 NICUs in nine States relied on the program’s prevention practice checklists and better communication to prevent an estimated 131 infections and up to 41 deaths and to avoid more than $2 million in health care costs, according to a newreport (http://www.ahrq.gov/professionals/quality-patient-safety/cusp/clabsi-neonatal/index.html.)

 

CLABSIs are healthcare-associated infections (HAIs) that cause serious illness and death in infants as well as adults. In newborns, especially premature infants, central lines can remain in place for weeks or months to provide nutrients and medications, creating opportunities for infections. Health care teams in the project States, caring for 8,400 newborns, used theCUSP Toolkit (http://www.ahrq.gov/professionals/education/curriculum-tools/cusptoolkit/index.html) to improve safety culture and consistently implement catheter insertion and maintenance guidelines. CUSP helps hospitals understand and apply the science of safety and take actions to improve teamwork and communications. A nationwide project to reduce CLABSIs in all ICUs that ended in September 2012 led to a 41 percent overall reduction, according to new details in aseparate final report (http://www.ahrq.gov/news/newsroom/press-releases/2012/20120910.html) from that project.   

Embracing your Child's Disability

Sometimes premature births (or even a normal birth) can result in your child having some sort of disability.

Whether it is a physical disability like cerebral palsy etc... or devlopmental disbility like Autism, a neurodevelopmental disorder, ADHD,  learning disability or maybe all of the above?? 

When you face such issues as a parent you often feel like you have done something wrong (I did) and once you find out your child has a disability life often seems like it comes to a screeching halt.

The emotional and physical stress of having a child with a disability can be devastating whether its a minor disability or major. 

First of all, accept that you will go through many emotions and don't try to fight them.  Things like depression, denial, anger, and yes eventually comes acceptance. These emotions are similar (if not the same) as you would deal with death and are not uncommon,  be prepared let yourself go through the process.

If you are able communicate with family members and friends do so as much as possible. If you don't have that support or feel as tho you can't talk to family or friends, find yourself a support group and/or a professional a therapist (one or  all of the above). Do not keep emotions and frustrations to yourself, its not good for you OR your special needs child.

If you have other children, do everything you can to help them understand what’s going on. Even though your special needs child needs you, your other children don’t stop needing you as well. Many special needs programs within your community will have sibling groups where kids talk about their sibling disabilities and how it effects them.

After dealing with your emotions its times to embrace our child’s disability? 

I can't stress enough that knowledge IS power, learn all you can about your childs disability.  Do research on the internet and find other families with children with the same  or similar situations.

Having a support network, any support network is so important.

My son isn't autistic but his characteristic do mimic PDD, they are calling it Neurodevelopmental Disorder (for now...)  I have joined the facebook groups such as Shut up About your Perfect KID,  as parents we all go through the same emotions and with this group its nice to have some humor go along with it!

If your child is under the age of three (3) contact your local early intervention.  If your not sure how to ask your pediatrician.  Early Intervention is a great way to start the process of getting services you may need.

When my son had a trach, I found an online support group called tracheostomy.com and eventually got together with local moms to help start a local support group trachcare.org  and, as I have mention in previous posts I have met some wonderful mom's who have become great friends today through ALL of these groups.

Other groups can include your local SEPAC (Special education parent advisory council), you can also contact programs like the federation for children with special needs they have support programs that will match you up with families who have similar backgrounds.

What's most important to realize after learning of the disability and coping with all of the above? EMBRACE your child’s disability. Be proud. Teach others what you have learned throughout your journey, take one day at a time and you SHALL Thrive.

Choosing the right Pediatrician/Specialist ...

If your situation is any like mine it will be important for you to first choose a pediatrician or specialist that will not only be your doctors but your advocate and your friend.  After all, even after the NICU your visits with specialists are not over.  You will be in and out of out patient follow up visits and when you graduate with one specialist your may very well be faced with another. 


Collin & Our Favorite Pulmonologist...
 

We were fortunate to have a great pediatrician since day one.  Specialists come and go and eventually you get good at what will work and what will not for you and your child.

Here are some of the criteria I needed (and still need) in a doctor....

1.  Patience and Creativity...my son was so easy going the first couple of years, doctors offices where just a way of life.  As he started to recover we had more of a stretch in appointments. From every two weeks, to every month eventually every three months and then every six months.  The further apart the appointments got the less cooperative he became.  Anything from from a simple exam on him became torture. Blood work?  Forget about it.  You will require someone who will sit spend time with my chil and not just say "i can't examine him" and be done with the appointment.  Trust me.  Been there.  Its not a good feeling.

Schedule a "getting to know you" visit, just 10-15 minute of their time -- if the doctor doesn't agree then take this as a warning.

2.  Experience...do your research, search online,  ask other moms.   I found experience and knowledge of preemie in a doctor to be important. From Pulmonary to Neurology... I felt that they knew what to look for, what questions to ask and what tests needed to be done.  We all know how preemies are not the "typical" child.

3.  What is their availability... or the first year or two (at least, took me about three) you will want your doctor to be available when you need him/her.  We were fortunate to have specialists who would give us their email or even their personal pager numbers.  (yes, pagers are unusual but it can happen, I think in my case the doctors always sensed my anxiety levels...lol)


In the end,  there are flaws will be some flaw in any practice that you choose, mine for example is strickly 9:30-5 and closes from 1-2 everyday for lunch.  They doesn't have special sick hours which makes me nuts but the staff and pediatrician make up for the areas where they lack. 

 If you like your doctor and want more techniques on how to talk to him/her check out this article...
 How to speak so your doctor will listen.

IEP Humor....

Days like today I'm convinced that IEP's are just to remind you of how much your child can not do.

I try to keep a positive out look but its so hard.  So whats the best thing you can do for stress?  Humor.

This is one of my favorites:

IEPs by Dr. Seuss

Do you like these IEPs?   I do not like these IEPs
I do not like them, Jeeze Louise, We test, we check, We plan, we meet
But nothing ever seems complete.

Would you, could you,  Like the form?

I do not like the form I see, Not page 1, not 2, or 3, Another change
A brand new box, I think we all, Have lost our rocks.

Could you all meet here or there? We could not all meet here or there.
We cannot all fit anywhere. Not in a room, Not in the hall
There seems to be no space at all.

Would you, could you meet again? I cannot meet again next week
No lunch, no prep.  Please hear me speak.
No, not at dusk. No, not at dawn at 5 pm I should be gone.

Could you hear while all speak out? Would you write the words they spout?

I could not hear, I would not write.  This does not need to be a fight.
Sign here, date there, Mark this, check that
Beware the students ad-vo-cat(e).

You do not like them, So you say
Try again! Try again! And you may.

If you will let me be, I will try again  You will see. Say!

I almost like these IEPs, I think I'll write 6003. And I will practice day and night
Until they say, "You've got it right!"

Video; Do Schools Kill Creativity?

Someone showed me this video by Ken Robinson and I had to share it got me thinking.


Are schools killing our kids creativity.  Especially our kids who struggle with minor or major disabilities.

 I am a big believer of focusing on any child's strengths verses their weaknesses. With my son I'm even more focused on it.

 My son struggles in math but excels in things like reading and loves music. He has learned a lot THROUGH music .  He also LOVEs pretend play and the arts.

What is his school doing?  Focusing on math.   Does this mean he should never learn math? No, that's not what I'm saying but I do think  he should do more with music and the other things he is GOOD at to BUILD confidence.  He has enough struggles.  Why focus on what hes not good at.

I especially related to the part in this video when Ken tells the story about a girl in the 1930's, the school said she may have a learning disabilities, she couldn't sit still and couldn't concentrate (today we all know its called ADHD. The school wanted her to be seen by a specialist. After the exam the doctor put the radio on and left the room with the mom.  They watched the girl dance.  The doctor said "put her in dance".

This girl became one of the a great dancer and owns a dance company, met Andrew Lloyd Webber and is a multimillionaire. Such common sense no?....I love his point that today she would have been put on medication and told to calm down.  This girl was a someone who had to "move to think" as Ken put it.

This reminds me of when I ask my son a questions.  He gets up and moves all around before he answers the question.  He is one of those kids who has to "move to think"....

Hope you enjoy this as much as I did...Let me know what you think...

http://www.youtube.com/watch?v=iG9CE55wbtY

Article: Low Vitamin D linked to Pre-Eclampsia?

Even now 11 years later I can't help but wonder WHY I  developed Severe Pre-Eclampsia and HELLP Syndrome.

Pre-Eclampsia happens in about 7% of pregnancies and developing HELLP Syndrome effects .02 to .06% of pregnancies.

The cure as most of us know is to deliver the baby but for me my blood pressure actually went higher after I delivered!!

I Recently discovered a facebook page called HELLP Syndrome Awareness and "liked the page.

They recently posted this article from on a study done that  low vitamin D levels are  linked to Pre-Eclampsia that I wanted to share on Low Vitamin D During Pregnancy Linked to Pre-Eclampsia

At my last well visit a vitamin panel was done. Something my doctor never really checked before? My vitamin D levels came back were very low. I now am on 2000iu's of Vitamin D a day.

Vitamin D deficiency is pretty common, especially for those of us living in the Northeast or in an region that does not see a lot of sun (particularly in the winter months)

Low Vitamin D levels are linked to other problems the most common Osteoporosis.   I guess it should be routine for us to always have your Vitamin D levels check!