Tuesday, April 13, 2010

Moving Forward - Save the Date

We are moving forward and have set the dates for our meeting times.  We will be meeting the first Sunday of every month (with the exception of December).  We will be meeting at Westlink Christian Church, 2001 N. Maize Rd. Wichita, KS 67212, from 5:00 p.m. to 7:00 p.m.  Our meetings will take place int he IGNITE Center. 

Child care is provided with prior registration.  Please send us an e-mail to reserve your spot!

Saturday, March 27, 2010

Miracle League Baseball

Here is some information regarding a baseball/t-ball league for special needs children. 

Hi all!

If you haven't already signed up to have your child play Miracle League baseball/t-ball or be an 'Angel in the Outfield' (buddy), and you are wanting to, please fill out and send in your registration.  There is only two weeks left to get registered (deadline is April 17th).  I've attached the forms for players and 'Angels in the Outfield" .

We are looking forward to a GREAT season of baseball!  Please pass this along to anyone who might be interested :)

Thanks!

Lainie Armstrong
www.miracleleguaeofwichitaks.org

Monday, March 1, 2010

Wichita YMCA H.E.R.O. Program

The Wichita YMCA now has a H.E.R.O. program!! H.E.R.O is a Wichita YMCA adapted needs initiative for boys and girls ages 5-11, with physical and mental disabilities. The goal of H.E.R.O is to give everyone an opportunity to play and be active regardless of limitation. To help the participants, volunteers that are at l...east 14 years of age are recruited and trained.

When are the activity nights?
Friday, March 5th 6:30-7:30 pm Basketball Mania
Friday April 9th 6:30-7:30 pm Dance/Rhythms
Friday, May 7th 6:30-7:30 pm Soccer Blast


Where will the activities be held? H.E.R.O activities will be held in the gymnasiums at the Central YMCA, 402 N. Market Street. Wichita YMCA staff and volunteers will greet you in the parking lot and at the door to escort you to the gym. Elevators are onsite for those using walkers, wheelchairs, etc.


What will my child be doing? Your child will be paired with a trained volunteer and will participate to the best of their ability in activities such as basketball, dance/rhythms, and soccer!


How much does it cost? These activity nights are FREE to anyone wanting to participate. You DO NOT need to be a Wichita YMCA member to attend.

How to register? To register your child or to volunteer, please email Tara Froese tara@wichitaymca.org or call 316-264-4066 ext. 244. Registration is important so we can be sure to have one volunteer for each participant.

Sunday, February 7, 2010

Who We Are

Tony and I are the parents of two children, both through the miracle of adoption.  Our oldest, Caleb, who is currently 7 - but is now on the countdown to his eighth birthday - is our exceptional child.  We began seeing signs that there was something wrong at the age of 15 months.  We began asking questions, but everyone just told us it was the terrible twos. 

After moving to a new state things were a little off, but we thought that was due to the move and new day care.  Then at the age of 2, Caleb had his second set of ear tubes put in and his adenoids removed.  At that point things went south very quickly.  Caleb quit sleeping, which meant we didn't sleep much. 

Finally, after being to two different psychologists, having a consult with a pediatric psychiatrist and finally getting a referral to a neurologist, we had some answers.  At the age of three Caleb was diagnosed with bipolar, ADHD, OCD and Anxiety Disorder.  We had numerous tests run prior to starting on any meds.  After the baseline tests we started him on Trileptal.  He seemed to do fairly well on the medication, but still had a lot of anxiety.  We were finally able to get services started with our local Community Mental Health Agency and had an appointment to see their pediatric psychiatrist, who just happened to be the doctor that we consulted with when Caleb was two.  She recommended adding Risperdal to the Trileptal.  We started with a small dose and Caleb started saying that he was falling.  Due to the concern that it was making him dizzy, based on the doctor's instructions we decreased the dose in half.  Two days later we made our first trip to our Crisis Center.  Caleb had a rage for two hours over the color of a sucker.  At that time it was decided that Caleb would be removed from the Risperdal and put n Seroquel. 

A year later, just five days after Caleb's fifth birthday, we experienced his first hospitalization.  Fortunately the hospital that he went to was 30 minutes from our house and they allowed us to be there as much as we wanted.  While there he was taken off the Trileptal and put on Depakote.  Caleb was the most stable he had ever been.  We had a really good period of time; however, we started to see more autism-type symptoms come out.  After the doctor had seen and heard me talk about those symptoms, she added Aspergers to his diagnoses.

At this time we were able to find a respite organization, which was a God-send.  ROCKO helped us so much by giving us a break to spend some alone time.  We knew that the kids were well taken care of and we could reconnect as a couple.

Since last May we have learned, after much testing, that Caleb has been having Complex Partial Seizures.  We also had some neuropsychological testing completed with Caleb.  On January 6th, we received the results of that testing and learned that Caleb's diagnosis was Childhood Disintegrative Disorder, which is a very rare form of Autism, and Mild Mental Retardation. 

So, in short, we know what it is like to raise an exceptional child.  There are many doctor appointments, therapy (individual and occupational) appointments, medications, and lab work that we must do on a very regular basis.  We're here to help!  Please let us!!

What is SPECIAL Needs?

As my husband, Tony, and I have been in the throws of parenting an exceptional child, we have found that it can be difficult to have the support and understanding of people who don't truly understand what all life entails to parent our son. We have been very fortunate to have some great friends and family that support us; however, they all do not understand what our life is like. As such, we have felt it is important to have a group where parents can come together to have a time to talk and share with other parents in similar situations, which is where SPECIAL Needs comes into play.

SPECIAL Needs stands for Supporting Parents of Exceptional Children by Informing, Advocating, and Listening.

If you are the parent of a child (or children) with special needs, we are here for you, whether it's too listen or help you locate services that are out there to help you and your family. In the near future we will be setting some dates to get together to meet and doing some fun activities.

Let's support each other on this journey that we are walking on.