Growing Up Special

Parents of Special Needs and Adopted Children Seeking Excellence

Archive for August, 2009

Aug
18

Special Needs Families: Are You On A Trip To Holland?

By Rainy on August 18th, 2009

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                                                           Are you on a “trip to Holland”?

         The poem written by Emily Perl Kingsley was cut out and pasted on refrigerator from February of 1992 until we moved to a new home in 1995.  It was titled, “ Welcome to Holland”.  In essence, it was a snapshot of what it is like to being unprepared when you give birth to a child who has challenges, such as medical or cognitive disabilities.

         There is one section of the poem that I read over and over again, “After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”     “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”   But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.”

My husband and I wanted to go to Italy and ended up in Holland on February 7, 1992.  I should have known that our trip to second time parenthood would be bumpy as we were told that our second born was to be a girl.   “Two girls, so nice”, my OB-GYN told me.  Guess what, we had the first boy born in 28 years in my family when he arrived via emergency c-section.  Not breathing right.  Sugar too low, heartbeat too high.  I could already feel the “plane veer” off course.

       Days later we were allowed to go home only to notice that our little “fella” was turning the color of a Sunkist orange.  Not good.  Not good at all.  Rushed back to the hospital to be told it was simple “jaundice”.  Nope, nothing in the child’s life would be simple, I found out. Days go on and before the first actual tulip bloomed that year we were in intensive care with our young guy.  Jaundice ended up to be a “liver problem” – not yet determined, but possibly very serious and could lead to severe retardation.  Respiratory syncytial virus/ RSV nearly claimed his life.  Reflux choked him every third breath.  Our nightmare continued.  You know you have a very sick baby when you can’t find room in the isolated PICU suite because of the number of doctors, nurses and respiratory therapists working with your child to keep him alive.  You also know your baby is very ill when the nurses come and ask you questions such as, ‘Is there anyone we can call for you?”  Does God have a hotline, I wonder? 

      For any new parent who has a baby you know this is the worst part of the scenario- waiting.   You wait to see if the tests are positive for illnesses that are unimaginable.  You wait to see if the insurance will cover the rare and complicated blood work, machines that are helping your child stay alive or special therapy sessions ordered.  You wait to see if you will ever have a “normal” life again for yourself, your family, your work, etc.  Will your child walk, talk, eat normally, have friends, etc.? You begin truly begin to hate Holland. 

      Then, little by little, the wait can end.  Test results come back.   Therapies begin.  Hospitalizations end and you go home.  But, for many of us, this is when you start a new journey in to the realm of Special Education.  Here is the most ironic part of this story and the reason I am writing it for this blog.  I am a special educator.  I am a full fledge, certified School Psychologist that is trained with helping parents and children with special needs.  All my training flies out the window as my mind is trying to process the months of evaluations, reports and recommendations from specialists.   Ironic indeed.  I have now changed teams!  Instead of being the intervention specialist I now am the one calling our local school district asking for help from the Early Intervention Team!   And I am so grateful when they appear at my door. But, I still have problems with paperwork and understanding all the information.  How can this be?  I do this job everyday and I am still wading through it because my head is so full of grief and confusion.  The team helps me. Everyday gets a little better. Clarity arrives with every meeting or visit from a team member. Family members come on board to help.  We get it griethrough it. 

     Now fast- forward, our son improves with therapy as he starts to talk, walk (actually run) and become quite sociable.  He has more hospital visits but he is deemed fairly healthy.  His liver has a benign disorder and we are told that he shouldn’t go without food or enter in to the military.  We can live with those two stipulations to have a benign liver disorder vs. the alternatives.

 I also become a much better psychologist.  Often I go to our refrigerator and I read Welcome to Holland.  As I do, I imagine my own fears, but also the see the faces and hear the sad, confused and sometimes hopeful voices of countless parents and children I have worked with in the past. I am a better person because I stopped in Holland than Italy.

    As for the little “fella”, he is applying to colleges now. He has had his challenges, but nothing we couldn’t handle without the help of school and healthcare professionals.

     And guess where he suggested we go on summer vacation this year?  Holland.  Well, I’ll be!

Hello Readers:  I would like to take this opportunity to thank Louise Sattler.  Louise is an expert in working with children…as she said…she is a certified School Psychologist.  She also heads up a great business known as Signing Families.  She has a website that you can access here:  http://www.signingfamilies.com.  Louise is available to do workshops and she does speaking engagements as well.  Teaching sign language helps build relationships and opens doors of communication for those with special needs.  Louise and Signing Families has a wonderful DVD which teaches beginning sign language for babies, toddlers and pre-school age children; it has over 100 signs to use. 

      I can say that she is a very engaging woman who is open and willing to share her expertise and her experiences when it comes to educating and helping families succeed in opening doors of communication for their special loved ones.  Thank you Louise for sharing your personal perspective of living successfully with challenges in parenting children with special needs!

Aug
01

Sign Language To Communicate And Strengthen Relationships

By Rainy on August 1st, 2009

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I’ve had the recent pleasure of “meeting” an extra-ordinary person with a calling on her life to teach communication skills through sign language to families.  Louise Sattler is a very interesting person who has had a variety of experiences in different settings, including the educational field where she was a licensed school psychologist, which has enabled her to work with children and their families to develop strong and effective communication skills.

I met Louise through an online contest, believe it or not.  It was run on Twitter.  I happen to have won a poetry contest; and the prize, that I chose, was a DVD that made by Louise Sattler.   Louise has a site called:  http://www.signingfamilies.com/ . There you will find all kinds of information about Louise and what she does; but, I didn’t know all of that, when I won the DVD.

I chose that DVD because of the title and what I could potentially use it for.  The title is, “Baby, Toddler, and Preschool Sign Language”.   I work with children in several capacities and I liked the idea of learning some sign language just in case I needed to know it in the future.  I was so excited when i got the DVD because, just watching it I could see the passion and the commitment that Louise had for teaching sign language to children and their families.

Bravery came over me and I approached Louise about doing an interview with me so that I could blog about what she does through her workshops, her speaking engagements and through her DVD’s.   Louise agreed to do that and I thought that I would share the news of what she does because it helps so many people.  By teaching sign language as a way of communicating it allows families to be more effective in advocating for their special needs loved ones.

http://www.signingfamilies.com/ caters to those who live and work with individuals with special education needs.  Signing isn’t just for the deaf communities…people who struggle with many issues of disability can benefit from communicating through sign language.   So if you work in education, in health- care, daycare, foster care, adoption, or you have a business or a family member who is impacted…this is a great way to brush up your communication skills so that you can strengthen your ability to communicate effectively in your relationships.

If you would like to contact Louise Sattler about her programs & her work she can be reached at Louise@SigningFamilies.com; or, you can contact her to do a workshop, give an interview or a presentation by calling her business line at:               410-715-9647       .    Louise is also on Twitter: http://twitter.com/Louiseasl . She is very down to earth and she also teaches in Spanish-she is bi-lingual.  Ask her about her programs….tell her that Writewhereyouare sent you and you will get a discount.  :)   You can purchase her DVD’s at her site:  http://www.SigningFamilies.com/  or here on Amazon. com: http://bit.ly/913i5/

Ps.

  You can always stop by and see me also at:  http://www.writewhereyouareblog.com/ .

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