Today’s post is a guest post by Connie Baum. She is the author of : http://thehealthyandwealthyyou.com/blog/. Connie knows of what she speaks regarding caring for loved ones with special needs. Please read…this comes from her heart.
Toastmasters International stresses to their membership the importance of preparing each speech. It is important to think each project through, outline it carefully, craft it, and rehearse the presentation to perfection.
Preparing for our beloved special needs family members is even more critical; the quality of their very lives depends upon how carefully their family members have collectively thought out plans, outlined the needs, and decided together what would be the ideal scenario for the life of that special person in the family.
Everyone in town knew Marvin. He was a cheery, personable fellow with special needs and he lived with his parents until his elderly father passed away. For a decade or so Marvin told everyone he was the man of the house now and was taking care of Mother. When Mother died unexpectedly, Marvin was left alone, morose, and with no plan in place.
It was patently obvious Marvin had been well cared for and dearly loved. Close family members were seriously interested to help Marvin get on with his life after mourning his loss; but, they were unable to care for Marvin in their homes on a long term basis. When his mother was gone, he was lost and alone. After much confusion and a flurry of activity by family members and social service workers who intervened on Marvin’s behalf, Marvin was able to find a place to live with an agency well suited to meet his physical and social needs. They even found work for him in their sheltered workshop! Best of all, he could take a bus to his home church every Sunday morning! His value and worth was recognized and all his needs were being met.
Things for Marvin worked out swimmingly. Families who plan together for every eventuality, including burial and internment, can rest assured the needs of their special family member, whose needs are unique, will be properly met. It does take some open and frank discussion, contact with trusted attorneys and/or social workers to create a workable plan for the future for the “Marvins” of the world.
Implementing these plans can often be painful for family and clients alike. It can be reminiscent of the loss of death. It is the demise of the familiar, the comfortable. Conversely, it is entrance into a bright new world with exciting new opportunities, fresh new relationships and networks, as well as discovery of untapped skills and talents! There are transitions that are smooth sailing; other times the move into the new world is fraught with difficulty and adjustment comes more slowly.
Toastmasters members plan for successful speeches; loving families plan for successful lives-particularly where the lives of precious special needs people are their prime consideration.
I read an article that says that with prenatal genetic testing, performed before the 24th week of gestation that indicates a fetus will potentially be born with Down’s Syndrome, means that 90 percent of such parents have/or will choose to abort that pregnancy.
This means that less children are being born with Down’s Syndrome, it is a disorder that can affect the bodily functions of the person affected, they can have thyroid disorders, mental retardation, heart defects, reflux, ear infections, sleep apnea and some obvious facial cues such as a round face with small chin, and eyes that are almond shaped with an upward slant at the outer corners, they may have shorter limbs than the average person along with poor muscle tone. Many people are fearful that they can not handle raising a special needs child who is affected by Down’s Syndrome because of ignorance of the disorder.
I wonder if by doing these prenatal genetic tests, parents are unprepared for the outcome of information. Finding out that your unborn child has a disease/disorder/illness is only the first step. What happens after that information is presented to the parents? This information has to be dealt with in some means or fashion. Sometimes there are procedures that can be performed on the unborn child to improve it’s health and well being; other times there is nothing to be done. This is when some people decide to choose abortion as opposed to raising a child with special needs. You can learn more about this disorder here: http://www.ndss.org/ or here: http://www.nads.org/pages_new/resources/down_orgs.html
Abortion is a forever decision…there is no do over. What happens when one half of the parents wants to choose life and one wants to abort? Or one wants to risk surgery or medical intervention and the other parent disagrees? These issues can cause unbelievable stress and frustration…not to mention spiritual unrest when faced with a life and death decision regarding their child when it goes against their religious beliefs. Time is often the catalyst for a hasty decision. There were examples in the news story that talked about women/couples that made the decision for abortion…only to have future interaction with an individual with Down’s Syndrome, only to say later that if they knew more about the condition maybe they would not have chosen abortion.
Every life has value…fear is such a strong emotion that I think it can cause people to make a decision about abortion that they may live to regret. If a person or couple truly feels that they are ill equipped to raise a child with Down’s Syndrom than I personally believe they should bring the child into the world and allow it to be adopted. There is no shortage of people who wish to adopt and to parent a child…many people feel a calling to parent special needs children. There are some people who consider the child born with Down’s Syndrome to be a “gift”; or to be endowed with an extra-ordinary ability to love unconditionally. We should all be born with such a condition which causes us to love unconditionally!
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!
When you first become a parent you think that love will conquer all things that get in your way while you parent your child. However, there are somethings that can’t be conquered. You can’t undiagnose a child who has been labeled special needs; and you can’t be the biological parent of a child that you didn’t give birth to. As a parent, your greatest tool is love…but love isn’t enough to make bad situations go away.
However, you can find ways to improve aspects of the quality of your children’s lives; and yours, as the parent of a special needs child or the parent of an adopted child. No matter what the situation, or what the diagnosis is…it doesn’t change the fact that you love your child.
Disppointment is a real life shadow when experiencing obstacles raising children with challenges. It can’t be avoided. But love isn’t enough to change limitations imposed by a specific diagnosis…but, love is enough to find ways to still enable as much independence as possible. When love isn’t enough to fill up the empty spots left by the void of a biological parent in their lives…it is enough to show compassion and empathy to help them understand that the empty spots don’t have to lead to destructive behaviors.
The truth be told; special needs children and adopted children need a strong advocate in life, in school, and in medical settings. No one knows your child better than you, the parent, and no one will fight harder for them; to get the things that they need, when they need it. Parents are on the front lines of battle for their child.
When love isn’t enough to magically make everything perfect and ok…it is enough to give you the courage and strength to face the challenges before you and your child; and to find ways to be successful and achieve the milestones in life, that you know your child will benefit from. Love is enough to provide acceptance and encouragement to be growing as a person to be the best person that they can be.