It's worth 41 seconds of your time to start your Monday with a smile. Promise.
Source.
Oct 31, 2011
It's Fantastic.
Oct 30, 2011
Beautiful Heartbreak
These lyrics are stunningly beautiful and poignant to how I feel about living this special life!
I had it all mapped out in front of me
Knew just where I wanted to go
But life decided to change my plans
And I found a mountain in the middle of my road.
I knew there was no way to move it
So I searched for a way around
Broken-hearted, I started climbing
And at the top I found
(Chorus)
Every fear, every doubt, all the pain I went through
Was the price that I paid to see this view
And now that I'm here I would never trade
The grace that I feel and the face that I find
Through the bittersweet tears and the sleepless nights
I used to pray He'd take it all away
But instead it became a beautiful heartbreak.
I never dreamed my heart would make it
I thought about turning around
But Heaven has shown me miracles
I never would have seen from the ground
Now I take the rain with the sunshine
Cuz there's one thing that I know
He picks up the pieces along each broken road.
(repeat chorus)
Oct 29, 2011
Oct 28, 2011
Special Needs Financial Guide
Guest post by Benjamin Weiss of MetLife’s Center for Special Needs Planning.
Families with children or adults with special needs are confronting cuts in services and assistance even as they look for more guidance to make financial and other pressing decisions, a new, in-depth MetLife study found. As they experience a harsher economic climate, family caregivers are seeking meaningful information to help with special needs planning for their dependent. “I do believe the resources in my community will continue to disappear… I think parents will have to be more creative,” noted a caregiver in California who was one of the 1,000 individuals who participated in the MetLife Center for Special Needs Planning℠ 2011 Torn Security Blanket poll.
“The mixed picture painted by the poll findings and follow-up interviews with caregivers shows that a struggle exists for many of these families. Part of the struggle is to obtain useful information in a substantive context instead of scattered pieces from various sources. But at the same time we see the amazing perseverance of caregivers who are almost always willing to take a few additional steps in order to build a sounder financial framework for their dependents. This is an encouraging sign compared with our original study from six years ago,” said Kelly Piacenti, director of the MetLife Center for Special Needs Planning.
On the positive side of the ledger, 38 percent of caregivers have written a Will, compared to 32 percent in 2005, and 36 percent planned for their dependent’s future housing, up from 31 percent. The greatest area of growth was in the number of caregivers setting up special needs trusts – 21 percent reported setting up a trust, nearly double the amount in 2005.
Still, much remains to be done from a planning perspective, the study found. While, seven in ten caregivers responded that they had completed at least one financially related task, many have yet to address crucial gaps. For example, less than half (49 percent) of caregivers have identified a guardian for their dependent should they no longer be able to care for them. More than half (56 percent) said they are unfamiliar with the steps needed to identify a trustee to watch over their dependent’s financial holdings in the future. Another 55 percent weren’t sure how to set-up a plan for lifetime financial assistance for their dependent.
Caregivers Dissatisfied with Available Planning Information, Need Education and Guidance
A key factor in this inaction appears to be the difficulty that many caregivers encounter when looking for information and guidance – especially in the area of special needs planning. Caregivers are less likely to use a single source for financial information than they are for medical or educational information – perhaps pointing to dissatisfaction with the information available for planning, and the need to go to several places before finding solid assistance. What’s more, more than half (59 percent) of caregivers said there is too little information available about financial assistance (benefits and support provided by government agencies) and 55 percent said that it is very difficult to find. Only about one-third of families say they receive a support service, and, although they may not qualify, many caregivers do not know why they don’t receive a service. At the same time, 69 percent said that they are very concerned about being able to provide lifetime care for their dependents with special needs.
Employer Assistance Welcome
One avenue for planning assistance that appeals to caregivers is their employers. Over two-thirds say that access to a special needs planner would be helpful if provided by their employers, while 64 percent would welcome employer-sponsored workshops on special needs planning and access to legal services. Three-fourths of caregivers are likely to attend workshops about special needs planning if offered by their employer.
“With millions of American workers caring for a child or adult with a special need, this is very much a timely issue in the workplace, and it provides employers an opportunity to help,” said Michael K. Farrell, executive vice president at MetLife. “Providing support and education for these caregivers promotes greater employee loyalty, lowers stress, and contributes to a more productive workplace. Programs, such as the special needs planning workshops that MetLife provides through PlanSmart℠, can be a valuable addition to a benefits menu,” he added.
Ten Steps to Help Caregivers Plan
To help address a range of concerns, the MetLife Center for Special Needs Planning has created ten steps of Basic Financial Guidance for Caregivers. Each circumstance is unique, so caregivers should consider their own situation as well.
1. Plan for future medical, educational and housing needs for your dependent. Start by thinking about what your dependent’s needs will be in the future – and develop your financial strategy based on these projections. Will they need weekly daily medical treatments? Will they need funds for college? Would they live in a group home or need their own space?
2. Review beneficiary designations. To continue to receive federal aid, dependents with special needs cannot have any assets in their name (cash, art, jewelry) that is worth more than $2,000. Check with close friends and family to see if they have designated your dependent to receive any inheritance or insurance benefits from their estate– if they have, it’s important that they leave this amount to your dependent’s special needs trust (see number eight on this list for information on trusts). Don’t let well-intentioned friends and family unknowingly cause your dependent to lose access to valuable resources.
3. Have a family meeting to discuss your dependent's future needs. Just as caring for a dependent with special needs is a family affair, so is financially related planning. With the thoughts that you have prepared on your dependent’s special needs throughout their life, meet with your family members to discuss their concerns and options for future care. This is also a good time to broach the beneficiary designation issue discussed above.
4. Speak with a special needs financial professional and create a team of professionals to assist you in planning. Once you have determined the current and future financial needs of your dependent with special needs, it’s important to pull together a support team that can help guide you through the variety of options available to you and your family. The composition of the team may vary depending on your situation, but it may include an attorney, a health professional, and a school guidance counselor, among others.
5. Contact local nonprofit organizations for additional resource support. Your local nonprofit may be able to provide resources that can help with planning or that supplement the standard services provided by government agencies. A good starting place is to first contact a nonprofit dedicated to your dependent’s special need.
6. Apply for government benefits. Government benefits – such as Medicaid and Social Security – may help provide for your dependent’s needs in the form of medical treatments and supplies, equipment, financial assistance and more. Visit your local Social Security Office (www.ssa.gov) to find out what benefits your dependent may qualify for; call or visit their website first to find out what documents you should have with you for your visit.
7. Prepare your Last Will and Testament (review and update periodically). A Will declares how you want your estate to be distributed and allows you to select a guardian for your dependent when you pass away. It may be especially important to prevent automatic asset distributions directly to a person with special needs, and to be cognizant to not leave your dependent with special needs any assets in excess of $2,000 (as discussed in number two above).
8. Consider Setting up a Special Needs Trust. This allows caregivers a way to provide for their dependent’s care and quality of life, without disqualifying them for federal assistance. Trusts can be set up either funded or unfunded, and must be overseen by a guardian – often the dependent’s caregiver and/or a bank trust officer. Funds can be contributed gradually over the years, or designated as a beneficiary of an inheritance of a life insurance policy. The money in the trust must be used to enhance the dependent with special needs quality of life, and can help to supplement standard services and benefits provided by government agencies.
9. Apply for guardianship and conservatorship; if applicable. Caregivers must apply for a guardianship or conservatorship to maintain legal control over financial and healthcare decisions once a dependent reaches the age of 18. This can take up to a year in some states, so it’s best to start this process when the dependent turns 17. There are different levels of guardianship and conservatorship available, depending on the dependent’s capabilities and needs. For example, a limited guardianship could be solely for financial or healthcare-related decisions.
10. Prepare a Letter of Intent. Although not legally binding, this document is important for providing direction for the person or persons who will care for your dependent with special needs, and should be stored with other vital documents, such as your Will. Thinks of it as a “letter to the caregiver” – it can cover day-to-day care issues such as what medical assistance is needed, as well as quality of life guidance such as what entertainment and activities should be provided.
A copy of these steps and the 2011 Torn Security Blanket study is available at MetLife.
Methodology
To contact the caregivers of dependents with special needs, the MetLife Center for Special Needs Planning worked with the GfK Custom Research North America to conduct an online survey. A total of 1,004 panelists agreed to participate in the survey, which was conducted from May to June 2011. The margin of error for this survey is 3.2%. In addition, researchers conducted 18 in-depth online interviews with caregivers of special needs dependents.
About The MetLife Center for Special Needs Planning℠
The MetLife Center for Special Needs Planning works with national non profits and individuals to help support the mutual goal of helping individuals with special needs. The Center is dedicated to helping families plan for the future of dependents with special needs. Helping you answer those questions, directing you to the right resources, and just being there as a resource and advocate for you, is an important part of what we do. If you’d like to find out more or you’d like to be referred to a local MetLife Special Needs Planner, please call 1-877-638-3375, or visit our website at MetLife.
Oct 27, 2011
Oct 26, 2011
FASD
Hi My Name is Ann Michelle
I am the mother of two boys, Jeremy (12) and Kennan (7), both joined our family through adoption. Like pretty much everyone on your site I didn’t start my parenting journey thinking I would parent a special needs child. In fact we didn’t really understand what might be long term for my second son until a year ago. It has been a long journey to this point.
FASD
What is FASD?
Fetal Alcohol Spectrum Disorders
FASD: is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects can include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications.
FASD includes conditions such as:
¨ Fetal alcohol syndrome (FAS)
¨ Partial fetal alcohol syndrome (PFAS)
¨ Alcohol-related neurodevelopmental disorder (ARND)
¨ Alcohol-related birth defects (ARBD)
Fetal alcohol effects (FAE) * obsolete terminology.
What Are the effects of FASD?
The effects of FASD vary among affected individuals.
Outcomes associated with FASD can include:
¨ Specific facial characteristics
¨ Growth deficits
¨ Mental Retardation
¨ Heart, lung, and kidney defects
¨ Hyperactivity & behavior problems
¨ Attention & memory problems
¨ Poor coordination or motor skill delays
¨ Difficulty with judgment and reasoning
¨ Learning disabilities
“Of all the substances of abuse (including cocaine,
heroin and marijuana), alcohol produces by far the
most serious neurobehavioral effects in the fetus.”
Institute of Medicine, 1996.
Us
My husband, Delmer and I have been married 17yrs. We learned two years after our marriage and two miscarriages later that we had less than a 10% chance of having biological children. We decided with the Lord’s help that adoption was the way we would build our family and thus began our journey.
Our Family
Five years into our marriages we adopted Jeremy and four and a half years after that we adopted Kennan.
Our Story
When Kennan was first born he seem healthy and “normal”. There was nothing that noticeably indicated that there were larger issues that would rear their ugly heads in the future. Things that we noticed where not life or death and could be attributed to normal. He was born with a heart murmur and a herniated belly button. Both healed on their own. He was fussy and seemed much like a colicky baby. He did better with soy based formula and we assumed he just couldn’t yet tolerate the milk proteins in regular formula. He was hard to comfort, would arch his back when you tried to snuggle and he didn’t always like to cuddle. But, there are some kids who just aren’t as snuggly as others. As he grew into a toddler he became stubborn, uncooperative, and unwilling to entertain the word “no” if he was being restricted from doing something he wanted to do. People kept telling me this was normal “terrible twos” behavior. But it was different than anything I had experienced. My gut instinct told something was “off” and “just not quite right” but I bowed to those with more experience and hoped they were right about him out growing all the little things that we were seeing. Then came his preschool years. He was have trouble with language acquisition and speech problems. People would tell me he was hard to understand – even I had a hard time always interpreting what he was trying to say and I am a full time stay at home mom. When we finally were able to get him evaluated by a speech pathologist she couldn’t find anything wrong. But the problems persisted and he was evaluated again in Kindergarten with the same result. His behaviors had also slowly begun to escalate and he was getting more noncompliant regardless of what we tried. We ask about things like ADHD and ODD – but where told that most doctors will not evaluate for either of these until around six because many kids do grow out of these behaviors. Again I didn’t listen to my gut instinct (I’m a slow learner) and bowed to those with more “experience”. Kindergarten was difficult but he seemed to manage with help. Kennan had a hard time learning the Alphabet and an even harder time putting sounds with letters. However, he could “read” a number of sight words. Money and time were difficult (although this can be common in many kids). He had a hard time consistently remembering his basic shapes – but had his basic colors memorized. Days of the week meant nothing to him and forget months of the year. He couldn’t even tell you his birthdate. His teacher and we were seriously talking about repeating Kindergarten. But with lots of help he pulled it together and rallied to meet the benchmarks necessary to advance to First Grade. His behaviors also increased. He was becoming angry and aggressive when frustrated and would hit, pinch, kick, and bite family members when he didn’t get his own way. He would also attack his brother without provocation. By first grade things had escalated even more. Both my husband and I had noticed that he didn’t always seem to “get it” or learn from consequences – both natural and disciplinary. School was becoming more of a battle he was having trouble staying on task and completing work. Homework was nearly impossible because he would through terrible temper tantrums when ask to do it. We were now beginning to understand that we had bigger issues than what he would just grow out of. In September of 2010 I came across an interview on ABC News about a couple who were parenting a child with FAS. As I listened to this mother describe some of the things they were dealing with, with this child it dawned on me that what she was describing sounded just like many things we had seen in Kennan. I “Googled” FAS/FASD and what I began reading that day left me a bit numb and shocked. It was like the authors of these sites had been living with us for the past six years. They were describing my child. But, I felt a little confused too. The paper work that Kennan’s birthmother had filled out for us stated that she had not participated in drugs or alcohol while she was pregnant with him. However, I had a vague unsettling flashback to a brief piece of conversation I had with Kennan’s birthmother a few hours after Kennan was born. But six years had passed and I just couldn’t be sure if what I was remembering was accurate since the conversation was just in passing and had happened so long ago. I called my husband at work and ask if he remembered if Kennan’s birthmother had ever mentioned drinking while she was pregnant. He said he wasn’t sure it was too long ago. I ask him if he had time that day to look up FAS/FASD and tell me what he thought. When he walked in the door that evening the first thing out of his mouth was, “that’s Kennan isn’t it?” All I could do was nod. We knew that we needed to have Kennan evaluated, but where to start?
We took Kennan to our primary care pediatrician. She diagnosed him with ADHD – it would be the first of a growing list of disorders. This time however , I listened to my gut instinct. I knew from my reading that many alcohol exposed children are misdiagnosed with ADHD. So we kept pushing, slowly at first, and later more forcibly. We agreed to try him on Ritalin for three weeks. It made the aggressive, argumentative, and out of control behaviors worse – but only as the medicine was leaving his system. But it did nothing for the of task or lack of concentration behaviors. We then tried him on Adderall. This was worse than the Ritalin. He was explosive. During this time I had called our caseworker (at the time of Kennan’s adoption) and ask if he would please do some digging to see if we could find any documented proof that Kennan’s birthmother drank while she was pregnant. He agreed to see what he could find. About a week later he called us back and confirmed what we already suspected. Indeed Kennan’s birthmother had drank during pregnancy and she had also used cocaine. But, for Kennan the alcohol was the bigger issue. We do not have an amount, how often, or when during pregnancy she drank – just that she did. We were now into December and things came to ahead. When Kennan got out of school on the last day before Christmas break he went into a massive meltdown. It was on again, off again, meltdown for the next six hours. At nine o’clock that night I had him physically pinned to the floor in our living room to keep him from being able to physically attack me in any form. He was crying and I was crying. When I finally got him calmed down enough for us to sit on the sofa he turned to me and with tears running down his face he said to me, “Mommy, mommy, I don’t want to be this way.” It was like he had pierced my heart with a dagger. I cradled him and cried telling him how sorry I was that things were so difficult for him and promised him we were doing whatever we could. The next day we met with the pediatrician. We went armed with the evidence of alcohol exposure and some “mama bear” attitude. We took him off all the ADHD medicine and demand to be sent for an evaluation with specialist who could dig a little deeper.
In May of 2011 he was seen by those specialists. I wish I could say that we had all the answer when we left that day. Far from it!!! There is no “magic” blood test to determine if a child has an FASD and Doctors don’t like to give that diagnosis. When we finally got the medical report this summer Kennan added several more disorders to the ADHD. He is now listed as having ODD (Oppositional Defiant Disorder), SPD/SID (Sensory Processing/Integration Disorder), DBD (Disruptive Behavior Disorder) and an unspecified Learning Disorder with the possibility of an FASD (Fetal Alcohol Spectrum Disorder – more specific ARND (Alcohol Related Neurodevelopmental Disorder)). And if the Psychologist that we saw this last summer ( a whole other story) had his way we would add CD (Conduct Disorder) to that list. My son’s diagnoses are starting to resemble alphabet soup. So this Wednesday (Oct. 5, 2011) we are off to see the Geneticist for further evaluation.
Meanwhile my son sees an OT once a week for his sensory issues, we struggle with getting him to school and getting school work done (he doesn’t qualify for any services at school at this point because he isn’t two years behind – massive frustration) and we have just received approval to start our fundraising for his service dog (specially trained to meet his needs). And despite all the above disorders there are many people who still think he doesn’t have any special needs. You see when Kennan walks into a roomful of other second graders he appears (and often acts) like any other kid his age. He has learned to “keep it together” at school for fear of what other kids will say. Because many kids with FASD are like Kennan FASD has become known as the invisible disorder. They want him to,”just buck up, work harder, quit goofing around, stop being lazy, pay attention, stop the behavior, and just get the job done,” never trying to understand that maybe just maybe he can’t – he has brain damage and it’s permanent – that doesn’t mean he can’t be successful – but it does mean he might have to do it a little bit differently than many other children.
I am the mother of two boys, Jeremy (12) and Kennan (7), both joined our family through adoption. Like pretty much everyone on your site I didn’t start my parenting journey thinking I would parent a special needs child. In fact we didn’t really understand what might be long term for my second son until a year ago. It has been a long journey to this point.
FASD
What is FASD?
Fetal Alcohol Spectrum Disorders
FASD: is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects can include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications.
FASD includes conditions such as:
¨ Fetal alcohol syndrome (FAS)
¨ Partial fetal alcohol syndrome (PFAS)
¨ Alcohol-related neurodevelopmental disorder (ARND)
¨ Alcohol-related birth defects (ARBD)
Fetal alcohol effects (FAE) * obsolete terminology.
What Are the effects of FASD?
The effects of FASD vary among affected individuals.
Outcomes associated with FASD can include:
¨ Specific facial characteristics
¨ Growth deficits
¨ Mental Retardation
¨ Heart, lung, and kidney defects
¨ Hyperactivity & behavior problems
¨ Attention & memory problems
¨ Poor coordination or motor skill delays
¨ Difficulty with judgment and reasoning
¨ Learning disabilities
“Of all the substances of abuse (including cocaine,
heroin and marijuana), alcohol produces by far the
most serious neurobehavioral effects in the fetus.”
Institute of Medicine, 1996.
Us
My husband, Delmer and I have been married 17yrs. We learned two years after our marriage and two miscarriages later that we had less than a 10% chance of having biological children. We decided with the Lord’s help that adoption was the way we would build our family and thus began our journey.
Our Family
Five years into our marriages we adopted Jeremy and four and a half years after that we adopted Kennan.
Our Story
When Kennan was first born he seem healthy and “normal”. There was nothing that noticeably indicated that there were larger issues that would rear their ugly heads in the future. Things that we noticed where not life or death and could be attributed to normal. He was born with a heart murmur and a herniated belly button. Both healed on their own. He was fussy and seemed much like a colicky baby. He did better with soy based formula and we assumed he just couldn’t yet tolerate the milk proteins in regular formula. He was hard to comfort, would arch his back when you tried to snuggle and he didn’t always like to cuddle. But, there are some kids who just aren’t as snuggly as others. As he grew into a toddler he became stubborn, uncooperative, and unwilling to entertain the word “no” if he was being restricted from doing something he wanted to do. People kept telling me this was normal “terrible twos” behavior. But it was different than anything I had experienced. My gut instinct told something was “off” and “just not quite right” but I bowed to those with more experience and hoped they were right about him out growing all the little things that we were seeing. Then came his preschool years. He was have trouble with language acquisition and speech problems. People would tell me he was hard to understand – even I had a hard time always interpreting what he was trying to say and I am a full time stay at home mom. When we finally were able to get him evaluated by a speech pathologist she couldn’t find anything wrong. But the problems persisted and he was evaluated again in Kindergarten with the same result. His behaviors had also slowly begun to escalate and he was getting more noncompliant regardless of what we tried. We ask about things like ADHD and ODD – but where told that most doctors will not evaluate for either of these until around six because many kids do grow out of these behaviors. Again I didn’t listen to my gut instinct (I’m a slow learner) and bowed to those with more “experience”. Kindergarten was difficult but he seemed to manage with help. Kennan had a hard time learning the Alphabet and an even harder time putting sounds with letters. However, he could “read” a number of sight words. Money and time were difficult (although this can be common in many kids). He had a hard time consistently remembering his basic shapes – but had his basic colors memorized. Days of the week meant nothing to him and forget months of the year. He couldn’t even tell you his birthdate. His teacher and we were seriously talking about repeating Kindergarten. But with lots of help he pulled it together and rallied to meet the benchmarks necessary to advance to First Grade. His behaviors also increased. He was becoming angry and aggressive when frustrated and would hit, pinch, kick, and bite family members when he didn’t get his own way. He would also attack his brother without provocation. By first grade things had escalated even more. Both my husband and I had noticed that he didn’t always seem to “get it” or learn from consequences – both natural and disciplinary. School was becoming more of a battle he was having trouble staying on task and completing work. Homework was nearly impossible because he would through terrible temper tantrums when ask to do it. We were now beginning to understand that we had bigger issues than what he would just grow out of. In September of 2010 I came across an interview on ABC News about a couple who were parenting a child with FAS. As I listened to this mother describe some of the things they were dealing with, with this child it dawned on me that what she was describing sounded just like many things we had seen in Kennan. I “Googled” FAS/FASD and what I began reading that day left me a bit numb and shocked. It was like the authors of these sites had been living with us for the past six years. They were describing my child. But, I felt a little confused too. The paper work that Kennan’s birthmother had filled out for us stated that she had not participated in drugs or alcohol while she was pregnant with him. However, I had a vague unsettling flashback to a brief piece of conversation I had with Kennan’s birthmother a few hours after Kennan was born. But six years had passed and I just couldn’t be sure if what I was remembering was accurate since the conversation was just in passing and had happened so long ago. I called my husband at work and ask if he remembered if Kennan’s birthmother had ever mentioned drinking while she was pregnant. He said he wasn’t sure it was too long ago. I ask him if he had time that day to look up FAS/FASD and tell me what he thought. When he walked in the door that evening the first thing out of his mouth was, “that’s Kennan isn’t it?” All I could do was nod. We knew that we needed to have Kennan evaluated, but where to start?
We took Kennan to our primary care pediatrician. She diagnosed him with ADHD – it would be the first of a growing list of disorders. This time however , I listened to my gut instinct. I knew from my reading that many alcohol exposed children are misdiagnosed with ADHD. So we kept pushing, slowly at first, and later more forcibly. We agreed to try him on Ritalin for three weeks. It made the aggressive, argumentative, and out of control behaviors worse – but only as the medicine was leaving his system. But it did nothing for the of task or lack of concentration behaviors. We then tried him on Adderall. This was worse than the Ritalin. He was explosive. During this time I had called our caseworker (at the time of Kennan’s adoption) and ask if he would please do some digging to see if we could find any documented proof that Kennan’s birthmother drank while she was pregnant. He agreed to see what he could find. About a week later he called us back and confirmed what we already suspected. Indeed Kennan’s birthmother had drank during pregnancy and she had also used cocaine. But, for Kennan the alcohol was the bigger issue. We do not have an amount, how often, or when during pregnancy she drank – just that she did. We were now into December and things came to ahead. When Kennan got out of school on the last day before Christmas break he went into a massive meltdown. It was on again, off again, meltdown for the next six hours. At nine o’clock that night I had him physically pinned to the floor in our living room to keep him from being able to physically attack me in any form. He was crying and I was crying. When I finally got him calmed down enough for us to sit on the sofa he turned to me and with tears running down his face he said to me, “Mommy, mommy, I don’t want to be this way.” It was like he had pierced my heart with a dagger. I cradled him and cried telling him how sorry I was that things were so difficult for him and promised him we were doing whatever we could. The next day we met with the pediatrician. We went armed with the evidence of alcohol exposure and some “mama bear” attitude. We took him off all the ADHD medicine and demand to be sent for an evaluation with specialist who could dig a little deeper.
In May of 2011 he was seen by those specialists. I wish I could say that we had all the answer when we left that day. Far from it!!! There is no “magic” blood test to determine if a child has an FASD and Doctors don’t like to give that diagnosis. When we finally got the medical report this summer Kennan added several more disorders to the ADHD. He is now listed as having ODD (Oppositional Defiant Disorder), SPD/SID (Sensory Processing/Integration Disorder), DBD (Disruptive Behavior Disorder) and an unspecified Learning Disorder with the possibility of an FASD (Fetal Alcohol Spectrum Disorder – more specific ARND (Alcohol Related Neurodevelopmental Disorder)). And if the Psychologist that we saw this last summer ( a whole other story) had his way we would add CD (Conduct Disorder) to that list. My son’s diagnoses are starting to resemble alphabet soup. So this Wednesday (Oct. 5, 2011) we are off to see the Geneticist for further evaluation.
Meanwhile my son sees an OT once a week for his sensory issues, we struggle with getting him to school and getting school work done (he doesn’t qualify for any services at school at this point because he isn’t two years behind – massive frustration) and we have just received approval to start our fundraising for his service dog (specially trained to meet his needs). And despite all the above disorders there are many people who still think he doesn’t have any special needs. You see when Kennan walks into a roomful of other second graders he appears (and often acts) like any other kid his age. He has learned to “keep it together” at school for fear of what other kids will say. Because many kids with FASD are like Kennan FASD has become known as the invisible disorder. They want him to,”just buck up, work harder, quit goofing around, stop being lazy, pay attention, stop the behavior, and just get the job done,” never trying to understand that maybe just maybe he can’t – he has brain damage and it’s permanent – that doesn’t mean he can’t be successful – but it does mean he might have to do it a little bit differently than many other children.
Oct 25, 2011
Low Tech Yes and No Response
We were looking for a good way to for my non-verbal daughter to communicate so we started with a Yes and No response. After several techniques failed it seemed she had the most consistent response with the Yes No Answers app on the iPad. However, the iPad just isn't always available and we have lots of kids in the neighborhood that include Emma and they ask her questions and it's awkward for her to have me get in the way with an iPad for her to respond. It totally ruins the moment and then Emma ignores the iPad and me because there are kids around. So I decided to try a method that works well for another family that I know. It's low tech, super easy, and everyone including the kids can use it without any help. Let me tell you what we are doing. Basically, whoever wants to talk to Emma can ask her a question and then you hold out your right hand with your palm open facing her and your left hand fisted facing her and ask her yes (shaking right hand) or no (shaking left hand). Emma thinks about her response and then reaches out for the appropriate hand. It didn't take much time to get her to be very accurate with this method. And since we've been using this a few weeks now she knows which is Yes and No so we don't have to shake it anymore. I'm hoping that eventually we won't even have to say Yes and No when giving her the hand signal but that could come in time. For now I'm super excited that we have a method that Emma and that anyone can use with Emma. I created a card to laminate and attach to her wheelchair as an easy way to remind (or introduce if it's a new person) people about how Emma answer's questions.
Oct 24, 2011
Halloween Activities
Have a Halloween party coming up? We had one last night, but still have more to go, so I gathered a few activity ideas and thought I'd share them! (Images linked to sources)
Witch Ring Toss 
Witch Pitch
Halloween Twister 
Pop! Goes the Pumpkin! 
Boo Bowling =]
Pumpkin Felt Board 
Bingo (free printables)
Hope you have fun, no matter what you do! Happy Halloween!!!
Oct 23, 2011
Simplicity in Suffering
Guest post by Sue Lee of Lee Life & Lessons. Shared with permission.
This season of respite for our family has extended beyond my expectations. I’ve been waiting for the proverbial other shoe to drop for a while now but it’s still hanging onto my toes for some reason. Marcus has been doing really well and his contentment and progress in so many areas have been a huge encouragement to us. Our family has reached a new normal in living with Marcus’ disabilities and although there is an eternal heaviness in our hearts, we’ve been able to breathe a lot easier. I have a funny feeling that we’ll be looking back on these years as the golden era of parenting. I’m supremely thankful for this time.
I can’t believe I’m saying this, but there really are sporadic moments (albeit very short ones) when I forget our dear son has a terrible syndrome. But certain things will trigger the emotions of how we felt in the darker moments of this journey, when grief, sadness, and anxiety were close friends. And there is a sliver of my heart that kind of misses those times. I don’t miss the despair as much as how God used the despair to teach me and draw me close to Him.
There is a certain simplicity to suffering that I miss. When I’m low and crushed, my life somehow gets reduced down to 3 simple things:
1. God loves me.
2. God loves my family.
3. God loves others.
Which then causes me to respond with 3 simple things:
1. I love God because He loved me first.
2. If God loves my family, I trust that He will take care of my family.
3. If God loves others, I want to pray for and care for others who are suffering.
But I realize that I often over-complicate my life needlessly. I preoccupy myself with the unimportant and the transient things of life, being distracted by everything that life entails. So in these seasons when I’m breathing a little easier, I want to cry out to my Lord:
Because your steadfast love is better than life, my lips will praise you. So I will bless you as long as I live; in your name I will lift up my hands. My soul will be satisfied as with fat and rich food, and my mouth will praise you with joyful lips, when I remember you upon my bed, and meditate on you in the watches of the night; for you have been my help, and in the shadow of your wings I will sing for joy.
Psalm 63:3-7
I can’t believe I’m saying this, but there really are sporadic moments (albeit very short ones) when I forget our dear son has a terrible syndrome. But certain things will trigger the emotions of how we felt in the darker moments of this journey, when grief, sadness, and anxiety were close friends. And there is a sliver of my heart that kind of misses those times. I don’t miss the despair as much as how God used the despair to teach me and draw me close to Him.
There is a certain simplicity to suffering that I miss. When I’m low and crushed, my life somehow gets reduced down to 3 simple things:
1. God loves me.
2. God loves my family.
3. God loves others.
Which then causes me to respond with 3 simple things:
1. I love God because He loved me first.
2. If God loves my family, I trust that He will take care of my family.
3. If God loves others, I want to pray for and care for others who are suffering.
But I realize that I often over-complicate my life needlessly. I preoccupy myself with the unimportant and the transient things of life, being distracted by everything that life entails. So in these seasons when I’m breathing a little easier, I want to cry out to my Lord:
Because your steadfast love is better than life, my lips will praise you. So I will bless you as long as I live; in your name I will lift up my hands. My soul will be satisfied as with fat and rich food, and my mouth will praise you with joyful lips, when I remember you upon my bed, and meditate on you in the watches of the night; for you have been my help, and in the shadow of your wings I will sing for joy.
Psalm 63:3-7
Oct 22, 2011
Angel
Angel - Jack Johnson ♪
I've got an angel
She doesn't wear any wings
She wears a heart that could melt my own
She wears a smile that could make me want to sing
She gives me presents
With her presence alone
She gives me everything i could wish for
She gives me kisses on the lips just for coming home
She can make angels
Ive seen it with my own eyes
You got to be careful when you you've got good love
'cause them angels will just keep on multiplying
But you're so busy changing the world
Just one smile and you could change all of mine
We share the same soul
Oh oh oh ohh
We share the same soul
Oh oh oh ohh
We share the same soul
Oh oh oh ohh
Oh oh oh ohh
Mmm mmm mmm mmm
Images linked to sources.
Oct 20, 2011
Parents' Rights
By Jenifer Simpson of UCP
Being the parent of a child with disabilities is not really a whole lot different than being a parent of an average child, or so they tell me, but I really don't know because my only child has severe disabilities as a result of cerebral palsy. It is just that such a fuss can be made about it by your friends or family or the professionals around you. The biggest difference is probably that after you get through the first hoop of finding out about your child's disability, you will find the volume of work is bigger, louder and more compelling.
However, at the outset many professionals talk about parents going through something called 'the grieving process' when they first learn of their child's disability. According to this theory, parents first go through a stage of shock. This is followed by a sense of sorrow or grief where parents are thought to mourn for the loss of the "perfect" child that most parents hope for and expect. Then comes denial, according to this theory, where parents deny that their child is really disabled, or perhaps seek out other doctors to get second, third and fourth opinions. Anger and resentment come next, which may include going on searches for cures or fixes, and then finally comes acceptance.
This theory about stages of feelings -- shock, grief, denial, anger and acceptance -- will often be used by the professionals around you.
Doctors, therapists, teachers, early intervention specialists, case workers, disability advocates, lawyers, and a myriad of others who interact with you and your family may describe your feelings and sometimes your actions to you using this feelings model. Although, this grieving process is only a theory, it is widely believed, and you may in fact have all these feelings. But you also will find you don't fit this scenario and may feel you are being told how to feel and resent having certain beliefs or thoughts imposed upon you.
You have the right to whatever feelings you may have, and you may find that the course of your feelings is not like the linear model of this theory. For instance, I cycle through denial and anger periodically in new ways when I am confronted with a new aspect of my son's disability or when I must deal with a new set of therapeutic procedures for him. Occasionally there is something that sets off my 'grief', such as soapy television story or news event that evokes this feeling. Even though I am now ten years into 'accepting' my son's disability, I still have the right to go cry again.
The following is a discussion about feelings and thoughts that may assist you when it all gets a bit crazy.
Anger
Nothing in life really prepares anyone for being disabled and when it is your baby or child who is suddenly the recipient of this label, life may suddenly seem very unfair. You did not ask for this, and there is very little you can do to change it. Your sense of control over your life and the life of your child is at risk. Your relationships with other family members, especially your spouse if there is one, can be under great stress and it may be all you can do to hold yourself together. It is okay to be angry and to do your best to channel your anger into getting the best services you can for your child.
You may find your spiritual beliefs challenged and ask yourself "Why me, God?" or similar self-questioning. Others will be happy to tell you answers to this question, such as "God only picks special people for special children" or similar statements meant to reassure you. Often the truth is less clear-cut, and you have simply been caught unaware or random bad luck has just played a hand in your life. You have a right to your anger and frustration and you can acknowledge these feelings whenever you get to it.
Being Sensible
Everyone is told today that it makes good sense to seek a second opinion before having surgery or before investing money or before buying a used car. It should not be any different for you and your child with a disability, whether you are looking for a doctor who knows about cerebral palsy or a school that will accept your child or a church or synagogue congregation that welcomes you and your family.
If you hear of a new treatment or process that might help your child, you should look into it. You should not be rushed into a decision that can take a long time to make. Unless it is emergency surgery, for instance, you could take a year or so to make up your mind whether to subject your child to a new or another surgery.
It took me eighteen months once to get around to setting up a second opinion appointment for a surgical procedure. It can take a while to read everything you can get your hands on about a certain old or new procedure, for instance. You may find talking with other parents of children with disabilities very useful, but it is you who has to make the decisions and live with them. You deserve to take all the time you need to arrive at a resolution.
Keeping Things Private
In the same way that you may not want to share your anger with anyone and instead resolve things privately or through spiritual counsel, you may find other intrusions annoying. Many parents talk about the effects a child with a disability has on family members' privacy because suddenly new persons are brought into the family circle. A series of professionals who examine, give advice and sometimes even judge, or appear to be judgmental, about the actions of the individual family members may be impacting everyone.
One parent stated that the hardest part for her was "having to turn to experts -- it was difficult to have someone tell me what to do with my child," as if you don't know how to do it.
Some aspects of your life are simply no one else's business. If you do not want to discuss something or if you do not want your child's picture taken, it is your right to say "no" or "not right now" or "I'll think about this and get back to you" or "I'd prefer it if we did this another time." I have stated on several occasions that "I just can't handle this right now," and walked away.
Persistence as a Way of Life
Parenting is not easy, but most all parents try to do the best job they can or know how to do. It can be much harder when well-meaning people tell you that there are some goals they think your child will never be able to reach or that you must stand back and accept the fact that your daughter will never walk. A doctor may make a statement like "oh, he doesn't want to walk" or a family member or friend may tell you or imply you are wasting your time if you persist in a particular course of action.
There is nothing wrong with you if you are not willing to give up a certain attitude or course of action you want to take. Your child has an amazing potential for learning and no one knows what event or combination of events will make a difference in your child's life. Also, it is you that will live the consequences of any of your decisions, and not the well-meaning advisors who come and go in our lives.
Giving Up Is Okay as Well
Well-meaning friends and professionals have also told parents that they have not worked hard or long enough with their child with a disability. Statements such as "If you would just do this at home for 15 minutes a day on the weekends, it would make such a difference," or "if only you would take the time to train him to use the toilet/feed himself/manage his emotions/cut up his food every time/etc.".
The truth is that it could just as easily make no difference at all, and the instruction may in fact be getting in the way of your just plain enjoying your child. Also, when every activity becomes 'a therapy session,' a lot of pleasure can be lost that would otherwise be shared by you and our child. You are the one who lives with your child, and you are the one who is being asked to do just one more thing. If you cannot do something tonight, or every day, okay. That is your decision.
Sometimes advice givers simply don't understand the disability, or to what degree your child is disabled, or how their well-meaning suggestion sounds pretty stupid or crazy to you. For instance, a family member advised me to hang a track-and-lift system on my ceiling when I complained about the amount of lifting I had to do. While the idea had some merit, there was just no way I was going to undertake the hassle of such a design and installation, let alone how I was going to pay for it! Another parent told me about some of the flak she experienced when the placement for her child's disability 'was not inclusive enough'. "They don't understand how disabled he is," she said.
Often others do not understand how profoundly exhausted a parent may become or how few choices there are.
Setting Limits on Expectations
There are limits to what one person can do. You shouldn't expect yourself to think about your child all the time. And your child with a disability shouldn't expect to be the center of attention all the time or the center of your life all the time. It is often easy to have the child with a disabilities set the schedule and tone for all family life. You have limits and your child has limits; learn to recognize both and give yourself a chance to examine the situation before responding in anger or fatigue or with frustration. You are not SUPERPARENT.
I realized I had fallen into this trap once when I set a rule for myself to visit my son every day after work when he was in a children's rehabilitation unit after major surgery. I started to realize that I was demanding too much of myself, that it was all right for me to occasionally not visit him and I could work late or do something else. I understood that he, and I would, survive anyway.
Getting Annoyed With Your Child
There will be days when you like your child and days when you simply don't but that doesn't mean that you don't love this child or that you are experiencing a problem with the disability. Children with cerebral palsy are just as capable of being ornery as other children, and they should be disciplined as any other children. It is up to you as the parent to discern what is misbehavior and what is disability-related expression by your child. And sometimes you just may blow it!
Having Fun
You are not your child's therapist or teacher. You are Mommy or Daddy. Therapy and educational activities at home are certainly beneficial but you and your child need time to just fool around, tickle, giggle, tell stories and just hang out. These times are one of the most important parts of your child's "education" and the love and social skills learned by them will stand in good stead for the future as they will contribute greatly to the self-esteem of your child - and your own self-esteem as a parent.
I remember getting myself in a real emotional state over not finding an early intervention program for my son when he was three. Another parent kindly intervened and said "don't forget to enjoy him." This advice was very timely, and I let go for a while the frantic phone calls searching for 'a placement'. Having fun with your child with cerebral palsy can be a radical idea when you are surrounded by people telling you what to do or what should be happening next.
Being Unenthusiastic is Part of Life
No one expects you to be 'turned on' all the time to addressing the disability of your child. Sometimes you feel sad or you are worried about money or your other children, or you are sick. If other people take that as a sign that you're "not adjusting" or that you're "not accepting your child's disability," that is their problem. No one is excited about work every day. It can be tedious one day and new and interesting the next. The same is true of parenting. There will be days when your child thrills you with joy and days when parenting will seem like the most boring job on earth. You have the right to be "up" sometimes and "down" other days, and living with a child with cerebral palsy may emphasize this aspect of parenting.
Taking Time Off or Having a Life
As a parent you need time to yourself, with your spouse or partner and with other family members, and just time without kids around. Many parents describe the first time they went to the grocery store alone after their child was born as a tremendous feeling of freedom -- even though they were doing a chore, and even though they didn't talk to anyone but the checkout clerk. There are many parts of your life and each deserves as much attention and nurturing as does your special needs child. At one point I realized that I had no social life and, even though it meant spending money for a respite worker, the time taken to build friendships has probably helped me be a better parent to my child. And even if it has taken time and energy away from my child, I now have 'a life' and can talk about more than my son and his disability.
Being the Expert-In-Charge
You know your child better than anyone else as you have spent the most time and lived the longest with this child with a disability, longer than anyone else. You know what works and what doesn't; you have the big picture and history of your child and can utilize this in any situation. Support personnel come and go but you are the expert with the experience and first-hand knowledge of your child. In ten years of living with my son's disability, he has had six pediatricians and at least fifteen different physical therapists. One year we went through ten different personal care attendants!
In a fast-paced world, the parent of a child with a disability will be one of the constants in their life, and this responsibility often means protecting a child through assertive statements by the parent about how the child should be handled.
As the expert you have the right to be in charge of your child's educational, social and medical and other decisions, at least until your child can do this for him or herself. Professionals do not live the consequences of their decisions, so while you want their opinions, remember that they are only 'informed' opinions and not facts. They shouldn't tell you are wrong, that you will regret it, that you are selfish, or that you are not looking far enough ahead. Nor should they make you feel guilty or pressure you into a decision.
And it is not just experts who put this pressure on you; you may experience criticism from unexpected quarters, such as family members or visitors! A dinner guest once criticized me saying I should feed my son first, not me beforehand. I do this because I know how cranky I get when hungry and that I won't have the patience to feed my son. This rudeness reminded me that casual strangers often can misinterpret and misunderstand situations.
Parents are probably the single most important resource that a child with a disability has and often the child's only friend and advocate. This should be respected and if it isn't, it is time to find and surround oneself with supportive people, and professionals, who will respect this.
Keeping One's Dignity
You expect to be neither pitied nor admired but you do expect to be listened to and taken seriously. You expect the truth from doctors, teachers, social workers, and therapists who are there to help you. You deserve to know why the doctor is looking into your child's ear. If the doctor doesn't volunteer the reason, you can ask. From your friends and neighbors and from your family members who love you, you deserve a chance to be someone other than "the parent of the C.P.". You deserve to be talked to as an adult.
Sometimes when you are the parent of a child with a disability, you have to risk being aggressive, or more assertive, in order to obtain the dignity that is your right and your due. One surgeon once told me I "was a bad parent" if I didn't consent right away to a surgical recommendation he was making. You can be sure we never visited him again, and I found another with a better bedside manner!
Most of the suggestions and guidance that you receive from others should be taken for what they are: advice that you will ponder and which you may, or may not, act on. Even the most offensive-seeming suggestions are usually well-intentioned: it is just your call as to what to do with them.
None of these feelings apply just to parents of children with disabilities. All parents have certain common experiences, whether you have one child or ten, or whether your child with a disability is your first and only child, one of many children or the second disabled child in your family. You cannot forget that you are an adult with your own needs, desires, hopes and dreams. Over time you will change, just like all adults do and this will change the relationship you will have with your child. Enjoy your individuality and enjoy your child!
Jenifer Simpson is a former policy associate in the national office of UCP in Washington, DC, and the parent of a son, Joshua Chartienitz, who has cerebral palsy.
© United Cerebral Palsy
Being the parent of a child with disabilities is not really a whole lot different than being a parent of an average child, or so they tell me, but I really don't know because my only child has severe disabilities as a result of cerebral palsy. It is just that such a fuss can be made about it by your friends or family or the professionals around you. The biggest difference is probably that after you get through the first hoop of finding out about your child's disability, you will find the volume of work is bigger, louder and more compelling.
However, at the outset many professionals talk about parents going through something called 'the grieving process' when they first learn of their child's disability. According to this theory, parents first go through a stage of shock. This is followed by a sense of sorrow or grief where parents are thought to mourn for the loss of the "perfect" child that most parents hope for and expect. Then comes denial, according to this theory, where parents deny that their child is really disabled, or perhaps seek out other doctors to get second, third and fourth opinions. Anger and resentment come next, which may include going on searches for cures or fixes, and then finally comes acceptance.
This theory about stages of feelings -- shock, grief, denial, anger and acceptance -- will often be used by the professionals around you.
Doctors, therapists, teachers, early intervention specialists, case workers, disability advocates, lawyers, and a myriad of others who interact with you and your family may describe your feelings and sometimes your actions to you using this feelings model. Although, this grieving process is only a theory, it is widely believed, and you may in fact have all these feelings. But you also will find you don't fit this scenario and may feel you are being told how to feel and resent having certain beliefs or thoughts imposed upon you.
You have the right to whatever feelings you may have, and you may find that the course of your feelings is not like the linear model of this theory. For instance, I cycle through denial and anger periodically in new ways when I am confronted with a new aspect of my son's disability or when I must deal with a new set of therapeutic procedures for him. Occasionally there is something that sets off my 'grief', such as soapy television story or news event that evokes this feeling. Even though I am now ten years into 'accepting' my son's disability, I still have the right to go cry again.
The following is a discussion about feelings and thoughts that may assist you when it all gets a bit crazy.
Anger
Nothing in life really prepares anyone for being disabled and when it is your baby or child who is suddenly the recipient of this label, life may suddenly seem very unfair. You did not ask for this, and there is very little you can do to change it. Your sense of control over your life and the life of your child is at risk. Your relationships with other family members, especially your spouse if there is one, can be under great stress and it may be all you can do to hold yourself together. It is okay to be angry and to do your best to channel your anger into getting the best services you can for your child.
You may find your spiritual beliefs challenged and ask yourself "Why me, God?" or similar self-questioning. Others will be happy to tell you answers to this question, such as "God only picks special people for special children" or similar statements meant to reassure you. Often the truth is less clear-cut, and you have simply been caught unaware or random bad luck has just played a hand in your life. You have a right to your anger and frustration and you can acknowledge these feelings whenever you get to it.
Being Sensible
Everyone is told today that it makes good sense to seek a second opinion before having surgery or before investing money or before buying a used car. It should not be any different for you and your child with a disability, whether you are looking for a doctor who knows about cerebral palsy or a school that will accept your child or a church or synagogue congregation that welcomes you and your family.
If you hear of a new treatment or process that might help your child, you should look into it. You should not be rushed into a decision that can take a long time to make. Unless it is emergency surgery, for instance, you could take a year or so to make up your mind whether to subject your child to a new or another surgery.
It took me eighteen months once to get around to setting up a second opinion appointment for a surgical procedure. It can take a while to read everything you can get your hands on about a certain old or new procedure, for instance. You may find talking with other parents of children with disabilities very useful, but it is you who has to make the decisions and live with them. You deserve to take all the time you need to arrive at a resolution.
Keeping Things Private
In the same way that you may not want to share your anger with anyone and instead resolve things privately or through spiritual counsel, you may find other intrusions annoying. Many parents talk about the effects a child with a disability has on family members' privacy because suddenly new persons are brought into the family circle. A series of professionals who examine, give advice and sometimes even judge, or appear to be judgmental, about the actions of the individual family members may be impacting everyone.
One parent stated that the hardest part for her was "having to turn to experts -- it was difficult to have someone tell me what to do with my child," as if you don't know how to do it.
Some aspects of your life are simply no one else's business. If you do not want to discuss something or if you do not want your child's picture taken, it is your right to say "no" or "not right now" or "I'll think about this and get back to you" or "I'd prefer it if we did this another time." I have stated on several occasions that "I just can't handle this right now," and walked away.
Persistence as a Way of Life
Parenting is not easy, but most all parents try to do the best job they can or know how to do. It can be much harder when well-meaning people tell you that there are some goals they think your child will never be able to reach or that you must stand back and accept the fact that your daughter will never walk. A doctor may make a statement like "oh, he doesn't want to walk" or a family member or friend may tell you or imply you are wasting your time if you persist in a particular course of action.
There is nothing wrong with you if you are not willing to give up a certain attitude or course of action you want to take. Your child has an amazing potential for learning and no one knows what event or combination of events will make a difference in your child's life. Also, it is you that will live the consequences of any of your decisions, and not the well-meaning advisors who come and go in our lives.
Giving Up Is Okay as Well
Well-meaning friends and professionals have also told parents that they have not worked hard or long enough with their child with a disability. Statements such as "If you would just do this at home for 15 minutes a day on the weekends, it would make such a difference," or "if only you would take the time to train him to use the toilet/feed himself/manage his emotions/cut up his food every time/etc.".
The truth is that it could just as easily make no difference at all, and the instruction may in fact be getting in the way of your just plain enjoying your child. Also, when every activity becomes 'a therapy session,' a lot of pleasure can be lost that would otherwise be shared by you and our child. You are the one who lives with your child, and you are the one who is being asked to do just one more thing. If you cannot do something tonight, or every day, okay. That is your decision.
Sometimes advice givers simply don't understand the disability, or to what degree your child is disabled, or how their well-meaning suggestion sounds pretty stupid or crazy to you. For instance, a family member advised me to hang a track-and-lift system on my ceiling when I complained about the amount of lifting I had to do. While the idea had some merit, there was just no way I was going to undertake the hassle of such a design and installation, let alone how I was going to pay for it! Another parent told me about some of the flak she experienced when the placement for her child's disability 'was not inclusive enough'. "They don't understand how disabled he is," she said.
Often others do not understand how profoundly exhausted a parent may become or how few choices there are.
Setting Limits on Expectations
There are limits to what one person can do. You shouldn't expect yourself to think about your child all the time. And your child with a disability shouldn't expect to be the center of attention all the time or the center of your life all the time. It is often easy to have the child with a disabilities set the schedule and tone for all family life. You have limits and your child has limits; learn to recognize both and give yourself a chance to examine the situation before responding in anger or fatigue or with frustration. You are not SUPERPARENT.
I realized I had fallen into this trap once when I set a rule for myself to visit my son every day after work when he was in a children's rehabilitation unit after major surgery. I started to realize that I was demanding too much of myself, that it was all right for me to occasionally not visit him and I could work late or do something else. I understood that he, and I would, survive anyway.
Getting Annoyed With Your Child
There will be days when you like your child and days when you simply don't but that doesn't mean that you don't love this child or that you are experiencing a problem with the disability. Children with cerebral palsy are just as capable of being ornery as other children, and they should be disciplined as any other children. It is up to you as the parent to discern what is misbehavior and what is disability-related expression by your child. And sometimes you just may blow it!
Having Fun
You are not your child's therapist or teacher. You are Mommy or Daddy. Therapy and educational activities at home are certainly beneficial but you and your child need time to just fool around, tickle, giggle, tell stories and just hang out. These times are one of the most important parts of your child's "education" and the love and social skills learned by them will stand in good stead for the future as they will contribute greatly to the self-esteem of your child - and your own self-esteem as a parent.
I remember getting myself in a real emotional state over not finding an early intervention program for my son when he was three. Another parent kindly intervened and said "don't forget to enjoy him." This advice was very timely, and I let go for a while the frantic phone calls searching for 'a placement'. Having fun with your child with cerebral palsy can be a radical idea when you are surrounded by people telling you what to do or what should be happening next.
Being Unenthusiastic is Part of Life
No one expects you to be 'turned on' all the time to addressing the disability of your child. Sometimes you feel sad or you are worried about money or your other children, or you are sick. If other people take that as a sign that you're "not adjusting" or that you're "not accepting your child's disability," that is their problem. No one is excited about work every day. It can be tedious one day and new and interesting the next. The same is true of parenting. There will be days when your child thrills you with joy and days when parenting will seem like the most boring job on earth. You have the right to be "up" sometimes and "down" other days, and living with a child with cerebral palsy may emphasize this aspect of parenting.
Taking Time Off or Having a Life
As a parent you need time to yourself, with your spouse or partner and with other family members, and just time without kids around. Many parents describe the first time they went to the grocery store alone after their child was born as a tremendous feeling of freedom -- even though they were doing a chore, and even though they didn't talk to anyone but the checkout clerk. There are many parts of your life and each deserves as much attention and nurturing as does your special needs child. At one point I realized that I had no social life and, even though it meant spending money for a respite worker, the time taken to build friendships has probably helped me be a better parent to my child. And even if it has taken time and energy away from my child, I now have 'a life' and can talk about more than my son and his disability.
Being the Expert-In-Charge
You know your child better than anyone else as you have spent the most time and lived the longest with this child with a disability, longer than anyone else. You know what works and what doesn't; you have the big picture and history of your child and can utilize this in any situation. Support personnel come and go but you are the expert with the experience and first-hand knowledge of your child. In ten years of living with my son's disability, he has had six pediatricians and at least fifteen different physical therapists. One year we went through ten different personal care attendants!
In a fast-paced world, the parent of a child with a disability will be one of the constants in their life, and this responsibility often means protecting a child through assertive statements by the parent about how the child should be handled.
As the expert you have the right to be in charge of your child's educational, social and medical and other decisions, at least until your child can do this for him or herself. Professionals do not live the consequences of their decisions, so while you want their opinions, remember that they are only 'informed' opinions and not facts. They shouldn't tell you are wrong, that you will regret it, that you are selfish, or that you are not looking far enough ahead. Nor should they make you feel guilty or pressure you into a decision.
And it is not just experts who put this pressure on you; you may experience criticism from unexpected quarters, such as family members or visitors! A dinner guest once criticized me saying I should feed my son first, not me beforehand. I do this because I know how cranky I get when hungry and that I won't have the patience to feed my son. This rudeness reminded me that casual strangers often can misinterpret and misunderstand situations.
Parents are probably the single most important resource that a child with a disability has and often the child's only friend and advocate. This should be respected and if it isn't, it is time to find and surround oneself with supportive people, and professionals, who will respect this.
Keeping One's Dignity
You expect to be neither pitied nor admired but you do expect to be listened to and taken seriously. You expect the truth from doctors, teachers, social workers, and therapists who are there to help you. You deserve to know why the doctor is looking into your child's ear. If the doctor doesn't volunteer the reason, you can ask. From your friends and neighbors and from your family members who love you, you deserve a chance to be someone other than "the parent of the C.P.". You deserve to be talked to as an adult.
Sometimes when you are the parent of a child with a disability, you have to risk being aggressive, or more assertive, in order to obtain the dignity that is your right and your due. One surgeon once told me I "was a bad parent" if I didn't consent right away to a surgical recommendation he was making. You can be sure we never visited him again, and I found another with a better bedside manner!
Most of the suggestions and guidance that you receive from others should be taken for what they are: advice that you will ponder and which you may, or may not, act on. Even the most offensive-seeming suggestions are usually well-intentioned: it is just your call as to what to do with them.
None of these feelings apply just to parents of children with disabilities. All parents have certain common experiences, whether you have one child or ten, or whether your child with a disability is your first and only child, one of many children or the second disabled child in your family. You cannot forget that you are an adult with your own needs, desires, hopes and dreams. Over time you will change, just like all adults do and this will change the relationship you will have with your child. Enjoy your individuality and enjoy your child!
Jenifer Simpson is a former policy associate in the national office of UCP in Washington, DC, and the parent of a son, Joshua Chartienitz, who has cerebral palsy.
© United Cerebral Palsy
Oct 17, 2011
Sparkle Effect
Sarah Cronk, the creator of the Sparkle Effect, a non-profit organization that helps high schools around the world create inclusive cheerleading programs, was awarded the $100,000 as part of VH1′s Do Something Award. The award recognizes teens who promote social change, and Sarah’s organization aims to help teens learn that individuals with disabilities are capable of great things. Just 18-years-old and cheerleader herself, Sarah created and coached the first inclusive cheerleading team that includes both students with disabilities and without disabilities when she was just 15-years-old!
Sarah started an inclusive cheerleading squad—the Spartan Sparkles—at her high school after noticing the struggles of her brother, who has autism, to fit in and find social outlets. Her brother was befriended by the school’s swim team captain, and Sarah saw how this simple act of inclusion changed her brother’s life for the better. A cheerleader herself, she wanted to help other kids with disabilities like her brother’s have a better high school experience and enjoy sports and other extracurricular activities that they had not been able to enjoy.
The Spartan Sparkles cheerleading squad, which performed at sports games along with the regular squad, was a huge success. In 2009, the program reached capacity, and instead of congratulating herself on a job well done, Sarah wanted to expand the program. She then created the Sparkle Effect with the goal of helping other high schools create similar inclusive sports programs for teens with developmental and physical disabilities. The Sparkle Effect provides mentors, support, training, grants for uniforms, as well as a free starter kit for schools and organizations who want to start inclusive sports programs.
Map of Sparkles Cheer Teams Across the USA
“Students at all the schools have reported that cheerleaders who are on the squads who have disabilities are being included outside of the squad,” Sarah said in a video that aired during the VH1 show. “People are more willing to talk to them at school. It puts the spotlight on their abilities rather than their disabilities.”
The Sparkle Effect now helps over 50,000 students with and without disabilities understand the importance of inclusion. The Do Something Award will help the program expand and reach even more teens, so that a new generation of people will be able to understand that abilities are more important than disabilities.
Three cheers for Sarah!
Sources:
http://www.disabilityscoop.com/2011/08/23/teen-inclusive-cheerleading/13790/
http://www.huffingtonpost.com/sarah-cronk/the-sparkle-effect-when-e_b_929193.html
http://www.dosomething.org/
http://www.thesparkleeffect.org/index.php?pg=18
Oct 16, 2011
Oct 15, 2011
The Living Proof
The Living Proof lyrics by Mary J. Blige
It's gonna be a long long journey
It's gonna be an uphill climb
It's gonna be tough
It's gonna be some lonely nights
But I am ready to carry on
I am so glad the worst is over
I can start living now
I feel like I can do anything
And finally I am not afraid to breathe
Anything you said to me
And everything you do
You can't deny the truth
Cause I am the living proof
So many thoughts fight
They just can't make it through
But look at me
I am the living proof
Oh yes I am
Thinking about life's been painful
Yes it was
Took a lot to learn how to smile
So now I am gonna talk to my people about the storm
Oh so glad the worst is over
I can start flying now
My best days are in front of me
I am almost there
Cause now I am free
Everything you say to me
And everything you do
You can't deny the truth
Cause I am the living proof
So many of those who fight
They just can't make it through
But look at me
I am the living proof
I know where I am going
Cause I know where I have been
I am gonna feel starts that showing
I am gonna keep rolling
That's the way that I will
Everything you say to me
And everything you do
You can't deny the truth
Cause I am the living proof
So many of those who fight
They just can't make it through
But look at me
I am the living proof
Nothing about my life has been easy
But nothing is gonna keep me down
Cause I know a lot more today
Than I knew yesterday
So I am ready to carry on
It's gonna be a long long journey
It's gonna be an uphill climb
It's gonna be tough
It's gonna be some lonely nights
But I am ready to carry on
I am so glad the worst is over
I can start living now
I feel like I can do anything
And finally I am not afraid to breathe
Anything you said to me
And everything you do
You can't deny the truth
Cause I am the living proof
So many thoughts fight
They just can't make it through
But look at me
I am the living proof
Oh yes I am
Thinking about life's been painful
Yes it was
Took a lot to learn how to smile
So now I am gonna talk to my people about the storm
Oh so glad the worst is over
I can start flying now
My best days are in front of me
I am almost there
Cause now I am free
Everything you say to me
And everything you do
You can't deny the truth
Cause I am the living proof
So many of those who fight
They just can't make it through
But look at me
I am the living proof
I know where I am going
Cause I know where I have been
I am gonna feel starts that showing
I am gonna keep rolling
That's the way that I will
Everything you say to me
And everything you do
You can't deny the truth
Cause I am the living proof
So many of those who fight
They just can't make it through
But look at me
I am the living proof
Nothing about my life has been easy
But nothing is gonna keep me down
Cause I know a lot more today
Than I knew yesterday
So I am ready to carry on
Made for Each Other
Made for Each Other lyrics and song by Emilie Mover
You are exactly one of a kind
There ain't no other I would find
You are eternally on my mind
We're so completely intertwined
And in a perfect world as this
You can wake up every day
And make your way
We dream of all the best stuff
And we can make it happen
We were made for each other
And we sing along with all our favorite songs
And we can make them up
Because we were made for each other
For always
Source
Oct 14, 2011
DIY Activities/Games
Finger Friends from Fave Crafts
Sponge Towers (like Jenga but cheaper and quieter) from Toddler Approved
Milk Jug Ball Catcher from Lakeshore Learning
Adapted Puzzles from Tots -N- Tech
Sensory matching game from Dandee
Indoor Scavenger Hunt printable cards from Kristine Mckay Designs
Emotional Animals charade game from Swetter than Sweets
Marshmallow Popper idea from Come Together Kids
Color Scavenger Hunt from Crafts ~N~ Things for Children
Another great card holder idea from Domestic, But Not Martha
I simply adore this adapted action figure idea from Tots -n- Tech
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