Parents+of+Special+Needs+Children

ShaKedra Little




 * When a mother learns that her newborn was born with Special Needs it can be a horrifying experience. Finding out two days after giving birth that your infant must undergo heart surgury or die is a difficult and life changing event.**

After giving birth to my beautiful baby girl I learned that she had to have open heart surgury in order to save her life. At that moment my life changed and I was faced with having to make drast quick decisons on hospitals to do the surgury and getting her air lifted to this town. No one equipped me for this and I did not know what to do. I had a seven year old daughter that was looking forward to her mother, father and baby sister to come home but yet I had to tell her that we now must travel to Atlanta, GA to get her sister surgury and she had to stay with her grandmother until we returned. My newborn was taken away from me by helicopter while I had to drive for hours in traffic to get to where she was. My husband was a big support but now looking back I realize that it was dangerous to be driving on an interstate and crying at the same time. We had to drive over 3 hours to get to her. With the shock we were in we did not get anything for the month stay in Atlanta that we did not know about at the time we left home to get to our baby girl.
 * Personal Story:**

"Special Needs" is an umbrella underneath which a staggering array of diagnoses can be wedged. Children with special needs may have mild learning disabilities or profound cognitive impairment; food allergies or terminal illness; developmental delays that catch up quickly or remain entrenched; occasional panic attacks or serious psychiatric problems. The designation is useful for getting needed services, setting appropriate goals, and gaining understanding for a child and stressed family.(Mauro)
 * Life changes forever!!!!**

The primary loss at that moment is learning that you must be seperated from this newborn baby that you have loved for nine months and have been able to hold for two days and bond with. I was also seperated from my seven year old that was waiting for us to return home.

Secondary Losses are:


 * taking additional time off work that was not planned for
 * not being able to go home from the hospital
 * trying to manage financial obligations in two places (if child surgury is not in hometown)
 * having a big family.
 * Husband and wife not being able to have more children together if the condition is genetic
 * Not being able to have grandchildren if it is not healthy for the child.
 * Not being able to get certain insurances due to health ( a preexisting condition limits insurance coverage).
 * Not being able to get financial assistance if parents work and are over income limit.
 * Grief related stressors**
 * Crying,
 * worrying
 * anger that child was not born as parents hoped for.
 * guilt that something was not done correctly in pregnancy
 * frustrated that doctors did not know prior to giving birth

To process over protectiveness a person may start to allow the children to take have cell phones that let them be able to have freedom yet allowing the parent to be able to contact them when they feel they need to contact them. Also the parent and the child can have weekends in which they spend time together while allowing the child to have other moments with their friends. While the child is an infant or toddler stages a parent can have moments that they pray and let the universe take it course hoping that everything will be okay. To process this a parent can have genetic testing to help the parent become at ease if it is a genetic situation. Also a parent can read up on the developmental disorder and learn how to take care of the child with the best knowledge and care. The parent can call the daycare providers to check on the child or take pictures with them so they can feel that the child is with them. Also a parent can leave a cloth with their smell so the child can have the parent scent with them at all times.
 * All leads to health problem in parents if not dealt with appropriately. Stress is bad for the human body.**
 * Crying:** By process I feel that every time a person thinks about the event they probably will cry when faced with the thought. However to deal with crying you can let it out and after that point when ever you feel like crying you can think about something else to divert ones mind from feeling that way.
 * Worrying**: Mostly people worry when they cannot change the situation. To stop worrying a person might try to read a book, fulfill a hobby and distract the mind from thinking about the dreadful situation.
 * Anger:** Anger is normal when someone is hurt or cannot process what is going on in their life. With anger you can start to take boxing lessons, run or do other exercises to get rid of the anxiety that is caused by the anger.
 * Life related stressor**s
 * A over protectiveness of the child that was born not to be hurt in life and wanting to protect them forever.**
 * Parents not knowing if the next child would be born normal.**
 * Not being able to work or be separated from child without fear that child will be harmed or something will happen and mother is not there to protect them.**



=**Things not to say to a parent with a speacial Needs child.....**= You’re probably trying to empathize by implying that this mom is maxed out with responsibilities. But it comes across as condescending. While a sympathetic statement like this seems inoffensive, it can put the person you’re saying it to in a tough spot
 * 1. “Wow, you must be //so// busy.”**
 * 2. “I’m sorry.”**

3. "You're lucky you have a normal kid too" Along with “But he looks so normal!” this implies that there’s something wrong with your friend’s child. According to Marie Hartwell-Walker, a psychologist who works for the Massachusetts Department of Developmental Services and author of the upcoming e-book //Tending the Family Heart When the Children Have Special Needs//, this line negates the value of a child with disabilities. “Most parents love //all// of their children. They shouldn’t have to defend that love.” So offer to listen, but don’t try to solve what you deem to be a problem.

4."he'll catch up" Children with intellectual disabilities will have many accomplishments, says Hartwell-Walker, but it’s unlikely they all will “catch up” to their typical peers. “When confronted with that statement, a parent has to explain what may be a painful truth.” Instead, suggests Ehlert, ask about their child’s unique abilities and interests. “What are her hobbies? What’s her favorite book

5. "You should take care of yourself so you can take care of him" While it’s true that any mom needs to look after herself as well as her family, suggesting an unrealistic getaway or “me time” can be presumptuous—and offensive.

6. "we're only given what we can handle" What you may intend as a compliment can come across as a meaningless platitude. Plus, “it implies that you’re supposed to be able to handle it,” says Ehlert.

7. "have you tried......" Though you may be trying to help or show your friend you’ve taken an interest in the subject, suggesting treatments or medications can offend.

8. "kids aren't really autistic...they just need discipline" “Autistic kids can’t control their emotions as well as others, and children with sensory disorders sometimes have big reactions to small changes or sounds,” says Vanek.

9. "what's wrong with him" A better approach: Highlight the positives. Say, “Wow, he has such a great smile!” or “What a cute outfit!” “Statements like these will allow a parent a moment to be proud and talk about something special that they’re doing for their child,” says Turner.


 * Learning how to cope!!!!**

1. Join Support groups.. others may have materials that can help get answers to assistance that you need.

2. Gain support from family and friends.....

3. Take Time out for yourself.

References:


 * 1) What Are Special Needs? Children's Disabilities and the Special Needs of Families, Mauro, Terri
 * 2) [|Special Needs Children - What Never to Say to Parents of Special Needs Children - Woman's Day]
 * 3) Copyright © 2009, Focus on the Family. All rights reserved. International copyright secured.
 * 4) **Tending the Family Heart: Connecting Your Family in Disconnecting Times** by Marie Hartwell-Walker Ed.D.