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Ways to Support Your Friend Whose Child Has Special Needs

by McKenna on August 10, 2009
category:Children’s HealthDown syndrome灵感Special needs

1124722_girls_talking_women_issuesI began motherhood as a parent of a child with special needs. I really don’t know what parenting is like without having children with medical concerns and special needs. What I do know is that I view motherhood as one of the most beautiful gifts I have received. My children are beautiful creations and through them God has placed some amazing people in my life. My dearest, closest friends are friends I have made or become closer to after becoming a mother. I often have struggled with feeling as though I have been loved much more than I am capable of reciprocating because these people in my life can love like no one else I’ve ever met.

我相信如果你的法文,则可能让人生畏iends or someone you know has a child with special needs. You may not know how to approach them or may feel awkward around them or their child. When that mom talks about frustrations that are bigger than anything you’ve dealt with as a mom, you may not know how to respond to them. As the parent of children with special needs, I’d love to share with you some ways to support, encourage, and deepen your friendships with moms of children with different needs than your children.

Allow the friendship to be two-sided

  • It is hard for me when a gal pal makes the entire friendship about my needs and doesn’t allow me to encourage and support them. My closest friends are friends who talk to me about the things happening in their lives without fearing that their drama is less important than mine. Don’t hold back discussing your life with your friend because you are afraid that they have more important issues than yours to talk or think about! Allow them to comfort and encourage you!

Ask questions

  • If you do not understand what their child’s needs are or want to know about something, do not be afraid to ask. Most parents would rather you ask questions than make an assumption. For example, when my daughter had feeding issues at birth requiring a feeding tube that most people had never seen, it was relieving to me when someone would ask me what the tube was. I felt like most people were scared of the odd tube coming out of my newborn baby’s nose and it felt good when people would approach me and ask what it was or why she had a feeding tube.
  • Be小心的意见或建议。即使you have experience with an issue the mom is dealing with, don’t be too forceful with your input or opinion about the situation. They likely have a bunch of specialists, therapists, and mother-in-laws helping them with the issue and probably forcing their own suggestions on their shoulders. Just like with all your mom friends, they are not going to share the same parenting philosophy as you on every issue. And the definition of their issue may be different than in the world off the typical developing child. For example, with a child with medical or developmental issues, they may not be able to use the “he’ll eat when he’s hungry” approach with their picky eater. However, don’t allow yourself to cross over from being sensitive with advice to being afraid to talk about their child’s struggles. It’s ok to suggest anything, just without becoming forceful or overly opinionated.

Pay attention to what is said

  • 写下你朋友生活中的重要日子。如果他们与他们的学校有特殊教育会面,请记住这一天,所以你可以跟进他们的方式。如果他们提到一周充满医生的任命,请询问他们的其他孩子是否可以在约会时玩。当有人记得你告诉他们的东西时,它总是感到好。

Allow them to be negative and vent

  • It is hard to maintain a positive attitude about the struggles involved in raising a child with special needs. When your friend vents, pouts, cries, or is ultra negative about a situation, give them your ear and shoulder. Try not to assume that they are overall unhappy about their lives though because they have these bouts of negativity. I get frustrated whenever I see my OB/GYN doctor because he saw me at my very worst when my first child was born with Down syndrome and my second child was born with a heart defect. I always feel as though he doesn’t believe me when I tell him that life really is going great because he will always see me as the mother grieving for the children she expected to have, but didn’t. I wouldn’t trade my kids for the world and even though I pout and become very negative about certain health issues they face, it is freeing to know that I have a few ears and a few shoulders who can handle that crying and even whining knowing how much I love my children. Those people have even told me I’m very positive about the situations I’ve faced, which shocks me because they get to see the nasty side of me during hard and scary times.

Remember that they’re moms just like you

  • Talk about the things you talk to other moms about. Do not feel intimidated because their parenting experience is a little different than yours. Invite them to playdates. If they’ve mentioned that their child has sensory issues and does not like over-stimulating environments, plan a quiet playdate at your house. Ask them mom advice. Don’t assume that they are too tired for a phone call or a moms night out. In fact, plan a time for you to get together sans kids!

所有这些建议都来自于非常精彩的接收端。我希望你能伸向一个妈妈,你知道谁拥有不同的需要不同的孩子而不是孩子!

Health Insurance for Children with Disabilities: Medicaid Waivers

496050_doctor_boyHealth insurance is a hot topic in the US right now. While congress debates the topic, I thought I’d share an option some families have that many are unaware of to insure their children. Most people are aware of Medicaid, a government run health care option for low income families. Many people do not qualify for Medicaid due to the income and financial guidelines. However, every state in the US has ”Medicaid Waivers” that allows certain individuals who do not qualify based on financial criteria to participate in Medicaid through these waiver programs. Typically, for a child to qualify for Medicaid, the government will evaluate the family’s income and assets to determine eligibility. Medicaid waivers evaluate the individual’s income and assets to determine eligibility and does not consider the parents’ income and assets. In other words, my daughter qualifies for Medicaid through a waiver based on HER income and assets and our total family income and assets are not factored into her eligibility determination. The waiver is offered to different populations of people. Some state Medicaid waivers are offered to individuals based on their intelligience quotient. Some state Medicaid waivers are offered to individuals based on their medical issues and health.

Every state is very different in how they run their Medicaid waiver programs and every state offers different benefits outside of Medicaid to their waiver participants. So, to keep my dear readers from becoming too confused, I am going to share with you how one Texas Medicaid waiver works. Keep in mind, in the state of Texas, there are actually many different waiver programs that all are slightly different from one another, however a basic understanding of one of these waivers will give you a general idea of how Medicaid waivers work.

我的女儿正在进行中医学依赖儿童计划医疗补助豁免(AKA:MDCP)。当她还有几个月大的时候,我把她放在一个兴趣清单上,这基本上是待评估MDCP资格的等候名单。将她加入兴趣清单很容易,我每个月都打电话给宗教,看她在列表中的位置。在她的第三个生日前一个月,我收到了来自MDCP的电话,说明我的女儿已经上了兴趣名单。我们在我的家中设置了评估,并且由于她的健康问题和药物,她有资格获得MDCP医疗补助豁免。我们选择为她保留我们的主要健康保险,并且她开始接受医疗补助作为补充健康保险,因此我们不再需要支付她的免赔额,共同支付,处方,费用股或任何其他健康相关费用。她的MDCP Medicaid豁免还带来了其他几个好处,包括:

  • MDCP pays a portion of our primary health insurance premium. It is cheaper for Medicaid to be a supplemental health insurance, so as an incentive for us to keep her on our family’s primary health insurance, we are reimbursed a portion of our monthly premiums.
  • MDCP provides respite. Due to her health care needs, she needs to be left with caregivers who are aware of her health issues, medications, and special needs. MDCP pays a person who we have hired to take care of my daughter in our home. This has been a huge blessing for my family. We were able to hire a person we trust to take care of her when we needed someone to watch her and are confident that if she needs any medical attention, that person will be able to take the proper steps necessary.
  • Her waiver provides medical equipment and supplies that are not otherwise covered by health insurance. My daughter is almost five and is still not potty trained. Her waiver provides diapers and supplies for her.
  • Her waiver provides transportation or mileage reimbursement for the many doctor and therapy appointments she has every week.

很多国家,但并非所有国家都有其医疗补助豁免程序的等待名单。要查看您所在州提供哪些类型的医疗补助豁免,请单击此处:http://www.cms.hhs.gov/medicaidstwaivprogdemopgi/08_wavmap.asp点击您所在的状态时,将弹出豁免列表。德克萨斯州有25个豁免计划。您可能需要滚动到另一个页面,以查看您所在州中的所有豁免程序。选择一个程序时,您将可以选择下载很长而令人困惑的程序描述。我建议,相反,联系或查看您的州老龄化和残疾部门的网站,了解更多关于您所在州的豁免方案和应用程序的更多信息(以外文的条款)。医疗补助豁免可能非常难以导航,但对拥有许多医疗问题或由于孩子的需求较高的需求而有需要喘息照顾的家庭的家庭非常有益。

Divorce Rate Among Parents of Children with Down Syndrome

by McKenna on June 8, 2009
category:Down syndromeIn the newsSpecial needsyobet电子竞技

1056041_man_woman_heart_5Until recently, I assumed that the divorce rate among parents of children with special needs, including Down syndrome have a higher divorce rate than parents of children who do not have special needs due to the additional obstacles these parents face. I was surprised to learn that, in fact, parents of children with Down syndrome have a降低divorce rate than parents of children without special needs. In my own marriage, I can see how having Darah has strengthened my relationship with my husband. She is an absolute joy to parent and watch grow up. Neither of us could have ever dreamed that we would have this much love for someone. Our perspective on life is drastically different than what is likely would have been had we not had a child with special needs. We appreciate the small things and have overcome very big things since Darah has joined our lives, which has definitely strengthened our relationship. Truth be told, having a child with Down syndrome has most certainly added stress to my relationship with my husband, but we both hands-down agree that the most stressful season of our relationship were the colicky days of our typical developing son.

本文discusses research performed at Vanderbilt Kennedy Center. One theory in the article as to why the divorce rate may be lower among parents of children with Down syndrome may be due to the“唐氏综合症优势。”意思是,患有唐氏综合症的儿童比典型的儿童更容易行为,并且患有唐氏综合症的儿童父母往往年纪大,经过更多教育,并在生孩子之前婚姻。

I disagree with their theory. This article isn’t accurate when they say that most children with Down syndrome are born to older parents. Actually, most children with Down syndrome are born to parents UNDER the age of 35. This is a very common misconception, even misunderstood by some physicians. While it is true that women over the age of 35 have a higher chance of having a child with Down syndrome, the pregnancy rate every year after age 35 decreases exponentially compared to the pregnancy rate before age 35. So, if you consider that most children in general are born to women UNDER 35 years old, there is going to be a larger pool of children born with Down syndrome in that population, due to sheer numbers. In other words, if a 49 year old woman has a 1 in 10 chance of having a child with Down syndrome, but it’s difficult to find ten 49 year old women having babies. If a 26 year old woman has a 1 in 800 chance of having a child with Down syndrome, it is pretty easy to find 800 24 year old women having babies. {I hope that makes sense!}

I have my own theory on why the divorce rate is lower in parents of children with Down syndrome. If you consider the fact that in the U.S., more than 90% of babies who are prenatally diagnosed with Down syndrome are aborted, most babies born with Down syndrome are born into families who either refused prenatal testing because it did not make a difference to them or learned of their child’s diagnosis prenatally and chose to give that child life regardless of their number of chromosomes. I believe that their approach and attitude about raising their children is what positively influences their marriages. My theory is consistent with this research findings that parents of children with special needs other than Down syndrome actually have a higher divorce rate than parents of children without special needs. Most other serious congenital issues are not detected prenatally as often as Down syndrome. I believe that once autism and other congenital issues are able to be determined prenatally, our population is going to sadly become a lot smaller. Most people are unaware of the waiting lists in the United States of people whoto specifically adopt a child with Down syndrome and other special needs. Of course, that is my own personal theory. I’d love to hear yours!

Are you surprised to learn that the divorce rate is lower among parents of children with Down syndrome? Why do you think the divorce rate is lower among parents of children with Down syndrome?

通过后调整

by McKenna on May 4, 2009
category:1 – 3 year (toddler)AdoptionDown syndrome

picture-072

I’m back! My husband and I recently adopted a little girl from Ukraine and I took some time off of The Mom Crowd to focus on our new little one. I have not experienced anything in my life more rewarding than inviting this precious angel, who was abandoned, to be a part of our family. The fact that she will not die in an orphanage without knowing what love is makes me wish for others to consider adoption!

Adding a 15 month old to your family is a little different than adding a newborn to your family! Reese joined our family with an already somewhat formed personality. The only language she understood was Russian and she has lived her entire life in an orphanage sharing 2-3 caregivers with 15 other children 24/7. So, the adjustment after an adoption has some unique challenges that adjustments immediately after childbirth do not have.

Our adjustment and Reese’s adjustment since coming home from Ukraine has gone remarkably well. My older two children did better than I could have imagined, with very minimal jealousy from my two year old son as he relinquished his role of being the baby of the family. Most of the adjustment issues I was prepared for with Reese became non-issues and I have spent the last month in awe at how {dare I say}简单this transition has gone.

我觉得我做的研究结合和attachment issues in orphans really helped prepare us all for this transition. It is not realistic to expect an orphan to feel an instant love for their new family and many times new parents do not feel an instant bond with the child they adopted. I did not have the expectation that from day one, she would feel bonded to us and even us to her. My love for her started before she came, but my bond with her may be something that I would acquire over time and not necessarily instantly feel.

Reese’s personality is pretty laid back, so she ended up being content with our routine and family dynamics quickly. A lot of orphans are not comfortable with too much touch because they are not used to it. I was prepared to teach Reese to enjoy being held, but there was no teaching necessary…she ate it up from the start! The one place she is aversive to touch is her face, so we are sensitive when we have to wipe her nose. While it was good that she loved being held from the beginning, she did not like being put down. Reese had a hard time with making eye contact with us the first week she was home. However, that changed pretty quickly. We also had to work very hard for her smiles and giggles in the beginning.

尽管她对我们的家人进行了很少的困难,但我对上个月的变化仍然惊讶!大约四周后,很明显,她知道我们属于她,她是我们家庭的一部分。在同一个四周的标记中,她开始笑着笑,微笑得多,不需要一直被举行,当我擦鼻子时甚至表现得更好。很难说出言语,但她现在显然感觉非常成立,现在它带来了这么多快乐!我们都习惯于我们这里的“新正常”。我唯一仍然习惯的是从一个地方过渡到两个孩子而不是两个的物流。有三个孩子进出车可能不是我最喜欢的事情......

The question my husband and I had before we met this little girl was whether we could truly love her as much as our biological children. The answer is aboslutely “YES!” and it happened quicker than we thought!

传播这个词来结束这个词!

由McKenna于2009年3月31日
category:Down syndromeIn the news灵感Special needs

r-word-graphic.jpg3.31.09. Today is the first ever “Spread the Word to End the Word!” I am excited to celebrate this awesome day with all of The Mom Crowd readers! As you know, the word “retard” is abused and misused by so many people. Most people use the r-word as slang or tongue in cheek, however, it is disparaging and hurtful to the millions of people with intellectual disabilities, their friends, and their families.

Spread the Word to End the Word is a campaign created by young people with and without intellectual disabilities to create a societal taboo on the r-word.The Special Olympicsand John C. McGinley (Dr. Perry Cox on Scrubs) are endorsing and publicly representing this campaign. Rallies are being held in work places, high schools, middle schools, elementary schools, and colleges around the world. The state of Delaware will be asking all 40,000 high school students to pledge to not use the r-word in their vocabulary.

我挑战你不仅仅滚动你的眼睛,认为这是另一个政治正确性运动。我挑战你听到那些具有智力残疾人的话语,他们的朋友和家人。我挑战你从你的语言中删除这个词,这些语言摧毁了我们世界上这么多个人的尊严。我挑战你今天和明天的日子“蔓延到了终止这个词”!

任何母亲都很自豪能够成为Soeren Palumbo的妈妈!这个孩子已经定义了R-Word为什么如此冒犯。我希望你能看到这个高中生的惊人演讲!

I will close this with a personal message from Dr. Coxerr…John C. McGinley:

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