by jphilo | Jun 20, 2012 | Advocacy, Different Dream, Special Needs Parenting
Today I’m pleased to introduce you to special needs dad Matt McNeil. He and his wife Shannon are the parents of two children with special needs: Waverly (8) and Oliver (5). Over the next few days, Matt will tell you about his experience as father to two children with terminal special needs. Today, he shares his family’s story.
Matt, would you share your special needs dad journey with Different Dream readers?
It all started when our son, Oliver, failed his newborn hearing screening before we left the hospital. His big sister, Waverly, had been falling behind her peers. A dreaded developmental delay. Since Oliver’s hearing loss was genetic, we had her tested, and we thought her hearing loss was the cause of her problems. It soon became apparent that she was affected by more than a hearing loss. Soon came another round of testing, which ended with a doctor in Philadelphia telling us that Waverly had MPS III, also called Sanfilippo syndrome and that she was not expected to make it out of her teenage years. Sanfilippo is a genetic condition, so this time Oliver needed a follow up test. One month later we learned he had it too.
Sanfilippo is considered a storage disorder, meaning that kids with MPS lack an enzyme needed to properly break down naturally occurring sugar molecules. Since the molecules cannot be disposed of properly, the body deposits them on healthy cells, damaging the cells in the process. The brain is the most affected part of the body. With each passing day, more and more cells are damaged and nothing can be done to stop the progression of the disease. Affected children seem quite normal at first, but eventual fall behind their peers. That’s basically the first stage of the disease. The second stage is marked by increased hyperactive behavior, including inability to sleep, gradual loss of skills such as ability to focus, to speak, even to feed themselves. In stage three, Sanfilippo kids begin to slow down, losing the ability to walk, swallow, or communicate. Their intellectual capacity is so diminished at this phase that their developmental age can no longer be tested. Life span varies.
How are you experiencing grief now? How do you cope with it?
We experience grief in waves. The initial shock of the diagnosis passed a while ago (we were diagnosed in 2008), and we are able to function like a normal family for the most part. But even if the wound isn’t as raw or near the surface, the pain of losing our kids to Sanfilippo syndrome is something we carry with us everyday, it informs all that we do in some way, and it can surface abruptly. One of the lessons I learned is that Sanfilippo is not happening to me. I am affected, but secondarily. It is Waverly and Oliver who live with Sanfilipp and are being taken away but it. This is how their one and only life will play out. For the longest time, I didn’t appreciate the subtle distinction between sorrow I felt at what I was losing–my kids–and the anguish I felt purely for them and what they were going through. As we’ve matured in our pain, it’s become much easier to focus on Waverly and Oliver.
In a way, I cope with grief by letting it take me where it needs to take me. If I feel sad, I let myself feel sad. We have strategies for not letting it consume us. For me, writing is a major cathartic force in my life; it doesn’t make everything better but the expenditure of creative energy is a great way for me to channel grief and make it constructive. Perspective is important too. I only have today to make a new memory with my kids. Am I going to take that opportunity to make that memory or do I just want to remember the sadness of today? As long as my kids are still with us, that question is a powerful reminder of how we want to help them live their lives and how we want to live ours with them.
Help Welcome Matt to Different Dream
Matt and his family have quite a story, don’t they? Tomorrow, he’ll be back to tell about their amazing friends who elevated the idea of a support system to a whole new level. Their act of generosity is mind boggling, so be sure to come back and read about it. In the meantime, help me welcome Matt and his family to Different Dream by leaving them an encouraging comment if you wish.
Part 2
Part 3
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by jphilo | Jun 13, 2012 | Advocacy, Different Dream, Special Needs Parenting
Welcome back for Part 2 of our interview with Lorna d’Entremont, co-owner of KidCompanions Chewelry. KidCompanions produces chewable jewelry for kids with special needs. Yesterday, in Part 1 Lorna explained how she morphed from busy grandma to business entrepreneur. Today, she answers questions about her special needs book review website and gives heartfelt advice, born from experience, for parents of kids with special needs.
Question 4: You also have a blog dedicated to reviewing books about special needs. How did that come about?
Reading has always been my passion. Anytime I have a spare moment, I reach for reading material—newspapers, magazines, books. Two and a half years ago when we started our Special Needs Blog on our Chewelry site I had posted a few reviews of books I had picked up at our library. Soon we had authors and publishers asking us to review their books.
In the Fall of 2011, due to the interest and ever expanding nature of the KidCompanion blog, we decided to move my book reviews to their own website, www.specialneedsbookreview.com Here book and CD reviews could be further organized into appropriate categories and groups, rated, giving opportunities for guest reviewers to submit their own reviews and also giving readers the opportunity to buy the books that are reviewed online.
With Special Needs Book Review now in its own domain, we aim to provide parents and educators of special needs children an invaluable resource where they can read, search, comment and buy books that can directly benefit them and others.
Also for two years I was a weekly host to a special needs Tweetchat for The Coffee Klatch and invited authors to be my guests. As our business grew and our two blogs demanded a lot of time I had to drop the Tweetchats at the end of March 2012.
When I write my reviews I always try to inform the reader about the topic covered in the book by quoting from the book or sharing a little of the parenting advice most of these books have. I hope my review readers will see how beneficial the whole book would be to their family.
One very successful feature on our book review site is our Author Interview Series. Most authors of the books I review are willing to participate. Their answers are truly amazing! Reading these interviews is like reading extra chapters to their books or like attending their lectures at a conference. I am so thankful to every author who has shared their experience and parenting suggestions with our readers.
Question 5: What feedback have you received about how your book review blog is meeting parents of kids with special needs where they’re at?
When parents receive a diagnosis or even as soon as their gut feeling tells them something is not quite right with their child, this is a dark, difficult, and scary time in their life. Many parents do not know where to turn for help, for encouragement, and for information about the evaluation, the condition, the treatment and the short and long term expectations. Whenever I want clarification or direction on a matter in my life I always reach out for written information. I hope that parents unsure where to turn or what to read will benefit from my reviews. Overwhelmed parents coping on little sleep and no spare time do not have the luxury of ready ALL the books out there. I hope by checking our book review and the interview with its author, they can quickly find resources to help their situation.
With each review and interview, I include the links how to follow the author and where to buy the books. Many parents tell me they often recommend the books I have reviewed to their child’s teachers or other caregivers. Those who are able to, even buy and give the books to the adults who work with their child or to family members so they will understand their child. Some parents recommend the books to their support groups or even suggest they be available in their therapists’ waiting rooms. Very often I hear parents say they buy the children’s picture books I have reviewed and make arrangement to share them with their child’s class.
One author was so pleased with the ripple effects about her children’s picture book after posting her book review and interview and having her as a guest on Tweetchat that it has given her the courage to write a second book, this time for the parents!
Question 6: What advice, encouragement, or hope can you share with DifferentDream.com readers?
Yes, the magic word is HOPE. Parents need hope to propel them forward, to meet the daily challenges of raising a child with special needs. With hope they need information and the knowledge they do not have to raise this child with high demands alone. Parents have to accept the fact that they need help. They must swallow their pride and reach out to others. Reaching out is not a sign of weakness; it is for your family’s well-being.
Parents of high needs children must also care for themselves and nurture their adult relationships with a spouse, friends, or family members. This is not being selfish it is being proactive. Parents who are running ragged from lack of sleep or being overstressed resulting in poor physical and emotional health or functioning on empty from lack of adult companionship are hurting themselves and in the end their family.
Many parents tell me setting up “free time” for themselves is so much work it is not worth it. Initially finding a reliable adult to care for your child/children might be a hassle, but once you do and you set up a routine to allow you “time to rest and recharge your batteries” you will be thankful you did. Some parents start this off by having the baby sitter at their home and in charge while they are relaxing in a separate place in the house. After awhile the new caregiver and the children get to know each other and the parents can leave the house without it causing a scene. One university professor suggested placing an ad for a caregiver where young adults studying to be special needs teachers or health care professionals gather.
Jolene, it was a pleasure to read and review your book, Different Dream Parenting. Thank you for participating in our Author Interview Series and I appreciate being able to answer your questions for your blog.
Thank You, Lorna d’Entremont
Thanks, Lorna, for taking time for this interview. Your advice, from the vantage point of someone who’s successfully raised a child with special needs, will mean a great deal to parents in the thick of the endeavor. Parents, if you want to share your reaction to Lorna’s story, please leave a comment. And be sure to check out the KidCompanions Chewelry website and the special needs books she reviews at www.specialneedsbookreview.com.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
by jphilo | Jun 12, 2012 | Advocacy, Different Dream, Special Needs Parenting
Hey, friend, thank you for visiting Different Dream. Today and tomorrow, I’m visiting with Lorna d’Entremont. She and her daughter, Pierrette, own KidCompanions Chewelry, a business that makes chewable jewelry for kids with special needs. In Part 1 of the interview, Lorna, the mother of three, grandmother and former school teacher, explains how the business came into being and describes the products their company creates. I hope her story in an encouragement and inspiration to you.
Question 1: Your company, KidCompanions creates “chewelry” for kids individuals with special needs. Usually, such endeavors have their roots in a family special needs experience. Is that true for you? If so, could you share a bit of your special needs journey with DifferentDream.com readers?
This is absolutely true! Our KidCompanions Chewelry came about because Pierrette, my daughter and business partner, was looking for something safe for her young child to chew on instead of her fingernails, clothes, and toys. Both Pierrette and one of her three daughters have Tourette syndrome. Pierrette’s daughter has various associated conditions like sensory issues, anxiety challenges and some ASD traits. She was born at 30 weeks and weighed about 2.5lbs. It was the sensory issues that we noticed first, as even wind or water caused negative reactions. She was three when we realized how effective chewing on her baby sister’s homemade polymer pendant was. She’d calm down a bit and stop gnawing on her shirt collars.
When Pierrette returned from university she desperately wanted to work but she knew she needed some accommodations to work around her Tourette. What better way than to own her business, be her own boss, and control her work schedule and environment to cater to her own medical needs and the needs of her family. She ran a successful, fine jewelry designing business for a number of years. When the “aha moment” about the need for a stylish, safe chew necklace came about her keen eye for detail, and having business and computer smarts made it easier for her to start her Chewelry business. First we had to make sure there was a market for a chew necklace.
We had not realized how many individuals with special needs could benefit from an age-appropriate oral-motor tool until Pierrette plunged in and started researching online. During this time, we entered our Chewelry idea in a provincial innovation competition and won 2nd prize. This included a market study done by The Sobey School of Business in Halifax, NS. This study included testimonials from special needs parents and health professional and the report was very clear. There is a need and there was a lack in effective products addressing sensory issues, especially oral motor issues at school, at play or in public settings.
So in 2006 began her journey to get her KidCompanions to market. Pierrette used strict quality control and extensively researched her materials. She reduced her carbon footprint by sourcing from North America and having her products manufactured in Canada in a medical grade, clean room facility.
KidCompanions are designed to North American safety standards. They are safe, bpa, phthalate, pvc, lead and latex free accessories. Pierrette worked on patents, got international insurance, used FDA approved material, and has a CPSIA (Consumer Product Safety Improvement Act) 3rd party testing certificate…the paper work was endless. Now we look back and are so pleased we accomplished all that before launching our SAFE oral-motor tools.
Question 2: What observations do you have about parents of kids with special needs based on your contact with them through your company?
Most of my life I have been involved with the special needs community. I am the mother and now a grandmother of children with Tourette and sensory issues. During my teaching career, I have often worked closely with parents of students with special needs. Now many parents who buy KidCompanions write to us about their children and their relentless efforts to find the products that will best help their child. I am truly amazed at the great lengths these parents take to become better informed about the condition/symptoms/treatment of their child. Their dedication is inspiring!
One mom from New Zealand wrote me the other day saying she had taken online courses about a method that a therapist was teaching that she feels will benefit her son. Other parents become volunteers in their child’s school and gain knowledge on the successful strategies used with their child so they can continue to use them at home. One mom explained that the early intervention program her child attended had a room for parents with a two way mirror. Many parents observed their child`s complete morning or afternoon sessions to be able to continue at home what the professionals were doing.
Some parents move to different school districts with better special needs programs. Some families I know have even moved to a new country to find adequate health care. Often one parent leaves her/his full time job to be a stay-at-home parent to be able to juggle the demands of a child with high needs.
Parents are the masterminds and elbow grease behind successful support groups and conferences, more school based services, special needs web sites, newsletters, summer camps, family retreats, conventions, and the list is endless.
Nothing can bring about change faster than a group of dedicated, well-informed parents. Knowledge is truly power. To do our small part in helping parents to become informed, we have a special needs blog on our KidCompanions Chewelry site. I post about new studies, new books and their authors, information on autism, Asperger’s, sensory processing disorder, Tourette, ADHD, mental health, education, early intervention, IEP’s, etc. We have a few guest posts written by experts in the field of special needs and parents of children with special needs.
Question 3: Does KidCompanion have any new products coming out soon?
We are continually monitoring our market place and new materials to produce our pendants. We have invested time in designing the next three pendant shapes we would like to have. The minimum order our manufacturer allows is 1000 pendants of the same color and shape, therefore we must be sure of our market before placing our orders!
Since the Spring of 2012, lanyards, in three lengths to accommodate young kids, teens, and adults, can be bought separately. We now also have our Clip-on lanyards sold separately. Many parents get the necklace one for daytime wear and the extra clip-on one to attach to a pillow or bedding at night or on a seat belt while in a vehicle.
Parents, teachers, and therapists like the reduction in price when they buy our Multi Packs. This Spring we have six different groupings of KidCompanions all with reduced shipping as well as a reduction in price.
What Product Ideas Do You Have?
Isn’t that a great story? Do you have questions for Lorna? If so, leave it in the comment box. And come back tomorrow for the second half of the interview. Lorna will tell us about her special needs book review website and give advice as the grandma of a child with special needs. Until then, visit the KidCompanions Chewelry website to learn more about their products and read their blog which covers a wide range of special needs topics.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
by jphilo | Feb 24, 2012 | Advocacy, Different Dream, Special Needs Parenting
Today’s post begins with a trip down memory lane. Close your eyes and think about the day you received your child’s special needs diagnosis. Go beyond the rush of emotion to the questions that came to mind. Can you remember them? In the following post, guest blogger Ellen Stumbo shares her early questions. Even better, she shares some of the answers she’s discovered since then.
Will She?
The moment Nichole came out of me, I knew she had Down syndrome. Within seconds, a tide of questions inundated me as I pictured Nichole’s future:
- Will she ever get married?
- Will she have a job?
- Will she live with us forever?
- Will she have friends?
- Will she go to college?
- Will she have hobbies?
- Will she play any sports?
- Will she learn how to play any instruments?
The Expectations of Normal Life Didn’t Seem to Apply
The thing is, those questions and thoughts never really crossed my mind when Nichole’s older sister Ellie was born. At least not the same day she was born!
Yet, with Nichole, those were the questions I was dealing with the same day of her birth. The expectations and the normal ways of life all of a sudden did not seem to apply. Funny how Nichole can grab a little guitar and show me that she will do whatever she sets her mind to.
We Can Dream Big
You wonder what my life can look like mom? Here is a little glimpse. Picture me and my husband at church leading people in worship, showing them what a pure hearts looks like before the Lord.
Okay, maybe Nichole is not thinking all of that, but she is showing us that we can dream big. This little girl is not going to let us limit her, because she has so much potential, so much to offer, so much to give. So here she is, my little girl with Down syndrome giving me the best guitar pretend concert I have heard. And who knows? Maybe some day, she will actually be helping her daddy lead worship!
Now It’s Your Turn
Okay, now it’s time to share your trip down memory lane. What questions did you have after receiving your child’s diagnosis? What answers have you received? How have the answers and your child surprised you? How is your family dreaming big? Leave a comment if you like.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
by jphilo | Feb 2, 2012 | Advocacy, Different Dream, Special Needs Parenting
About two weeks ago at DifferentDream.com, guest blogger Kathy Guzzo posted an important article based on her experience as a paralegal and the parents of an adult child with a chronic medical condition. In it, she explained how important it is for parents of adult children with special needs to have a medical power of attorney in place. Today, she’s back to talk about the importance of another legal document, the power of attorney for property.
Special Needs Power of Attorney for Property
In my last post I explained the benefits of having a signed power of attorney for healthcare as well as a signed medical authorization. I would now like to share the purposes of a power of attorney for property and why it’s important to have for any child that reaches 18, but even more so for a child with a chronic illness. As I explained previously, having been a legal assistant for years, I knew both power of attorneys were important, but when our 18-year-old daughter was diagnosed with Systemic Lupus and Epstein Barr Replication, I became even more aware of their importance.
The Purpose for a Special Needs Power of Attorney for Property
A power of attorney for property gives the designated agent the ability to handle any type of business for the principal listed, in our case our daughter. When anyone fills out and signs forms for any purpose such as to open a bank account, register for classes at college, finance a large purchase, get a cell phone account or other utility bills they are the only person that has access to any information on those accounts. The document holders, i.e. bank, college, utility company, have a legal obligation not to give out any personal information regarding the business relationship between them and the person who signed.
When to use a Special Needs Power of Attorney for Property
I have to admit I have not used the power of attorney for property as much as the one for healthcare but it’s great to have on hand for the following purposes.
- To contact any company other than healthcare providers to discuss a bill.
- To withdraw money or check balances in a bank account unless the parent is on the account. We purposely had Andrea get her own account without our names as a sign of our trust in her ability and her need to be responsible and there were times I needed to withdraw funds. Of course with online banking if you have your child’s passwords you can check the balance.
- To have a cell phone temporarily turned off without being charged a fee.
- To close any type of account.
- To discuss a lease or any other issue with a landlord.
- To discuss information with instructors, financial office or any administrator at college child is attending. There were a few times I had to contact instructors because Andrea was ill as well as discussing special needs she had with the administration when they required signed permission from her.
As with the power of attorney for healthcare, there may be times when someone may hesitate to give out information or want a verbal consent, but legally all they need is a power of attorney.
Respecting the Power of Attorney
Another important thing to remember with regard to using either power of attorney is that once signed, they can be executed at any time. The principal on the form doesn’t have to be unable to act on his or her own behalf. By signing the document they give their chosen agent permission to access their information at any time. For this reason, a parent needs to be very careful not to abuse the privilege their child has given them, by accessing information or contacting people when it really isn’t necessary.
Final Thoughts
Some attorneys combine the power of attorney for healthcare and the power of attorney for property as one document. This document will be called simply Power of Attorney or possibly Living Will. There are pros and cons to this, one being that a person may want to designate different people for each of the separate documents. So be sure you discuss things prior to your appointment and be prepared with any questions you may have for the attorney. As I mentioned before, having an attorney prepare powers of attorneys should be relatively inexpensive, but regardless of the cost it’s worth it because of the problems and stressors it can eliminate.
Have You Had a Similar Experience?
If you’ve dealt with these legal issues or similar ones, Kathy and I would love to hear from you. Share your best advice, your questions, your concerns, whatever is on your mind. And thanks to Kathy for sharing both her experience and expertise again today.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
by jphilo | Jan 26, 2012 | Advocacy, Different Dream, Special Needs Parenting
What’s your worst parenting nightmare? Can you narrow it down to just one? Guest blogger Amy Stout can pinpoint hers in a thumping heartbeat. It’s the topic of today’s guest post: special needs elopement. See if you can identify with her deepest fear…and with the seed of her idea about how to overcome it.
Special Needs Elopement: A Parent’s Worst Nightmare
It is a glorious day.
I am clutching her precious baby hand tightly within my protective mommy hand. I love the feel of her soft skin and her little fingers spooning with mine. I often take a snapshot of these moments in my mind. I so treasure these seemingly insignificant little things.
We are at the Iowa State Fair and it is so crowded! People are jostling us and bumping into us. I squeeze my little girl’s hand tight. I know she doesn’t like crowds, or sound, or light, or noise… but it is the State Fair… there is so much to see! I don’t want her to miss out!
In one hand I am balancing all of our “fair loot” piled precariously high. In the other, I hold my greatest treasure: The baby girl that I waited and prayed for longer than I care to remember.
The Reoccurring Dream
The heat is stifling, people are cranky, babies are crying, papas are scolding. Someone bumps into me from the left and my pile shifts… it begins to tumble. I drop my girl’s hand to catch the mementos of our day. When I reach for her again – just a split second later- she is… gone.
I frantically turn around – my head is whipping back and forth as my eyes search the crowd… she is gone!! Where is she? I catch a glimpse of her several feet away – scared – really scared. My heart catches in my throat- I literally cannot breathe- I try to scream- nothing comes out. I push against the crowd, but I can’t get through fast enough. I see her turn in circles-disoriented- looking for me. I see her start to panic, jerk, the people are getting too close – she runs…
The people are so heavy! Why can’t I break through? When did I become so weak? Kylie! I am here! Why can’t you hear me? Baby, just stand still… I am coming! “Please!” I hear myself scream out loud. “Let me through!”
And then… it happens… one of two things. It always happens… The things I dread the most… at this point, I see – literally see- a vehicle hit my baby or- even worse- I see someone grab her and take off with her!
It is always here that I wake up in a cold sweat, heart thumping, TERRIFIED of what I just lived through in my worst nightmare.
Anxious and Unreasonable Thoughts
I know these anxious thoughts are unreasonable and way overboard, but even so, they still come to me. The other day I was reading aloud to my husband as he drove and I stopped mid sentence and said “Did you buckle her in?” He looked at me as though I had lost my mind and said “Yes”… the reason I asked is that as I was reading, I had this vision of her flying right by me in the front seat and going through the windshield. (I KNOW!! so crazy!! but this happens to me ALL the time!! Talk about mommy fears on overload!!)
I do not know how people go through the loss of a child. Having my daughter hit by a car would be a tragedy, but having her kidnapped- to me- is far worse. It would be everlasting torture wondering where she was, if she was alright, what was happening to her, Did she miss or want me? Were people hurting her? Did she think we abandoned her?
While having everyone – and I mean everyone – stop us and tell us how beautiful our daughter is (and we can take no credit – as she is adopted) is so much fun, it is also extremely scary as I know my girl is a target for predators. People are always watching her.
Seeking a Solution to Special Needs Elopement
It was after one of these horrifying dreams that I began to put my thinking cap on and explore ways of keeping my daughter more safe. The “easiest” way was to utilize a safety harness, but with so much controversy surrounding these, I really didn’t want to go that route.
I had even recently read an article that said that parents who used these were “lazy parents” – I wanted to jump through the pages of that magazine and throttle the author. They obviously have never parented a child who experiences special needs – let alone autism. “lazy parenting?” let me trade places with them for One single solitary day. They would change that description faster than they could sharpen their pencil.
I finally decided that I didn’t care what other people thought, a safety harness was the best option for keeping my daughter safe. So, I began to dream up designs that would be more acceptable in public. Designs that would be more fashionable and less offensive to people who do not understand mental health issues or autism in general.
Can You Identify with Amy?
Are Amy’s emotions about special needs elopement similar to yours? Can you identify with her struggles? Or do you struggle with different emotions? Leave a comment about the emotional battles you face as the parent of a child with special needs. And come back tomorrow to see the safety harness Amy designed for Kylie. It is amazing.
Part Two
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
