Put a stop to unwanted removal of sleepers and diapers.
was the thought than ran through our minds when our triplets were toddlers and going through a phase of taking off their sleepers and diapers. With another daughter only twenty-two months older, a dog, and a busy household, we did not want to be spending our days changing sheets and cleaning messes! Instead, we tried to find a solution to keeping our children clothed at naptime and throughout the night. We found no solutions that we thought were safe and practical and that was how the idea of the Little Keeper Sleepers was born.
Some parents refer to the Little Keeper Sleepers as “sanity savers”, “life savers” and “the reason they can sleep again”.
We just know they help people, and we’re happy to be a part of that.
After many design changes, we finally concluded that we needed the features of a non-stretchable neck and two snap closure systems; one that covers the zipper and one that completely prevents the zipper from being pulled down by the child. This makes removal extremely difficult for children, yet easy for caregivers to get on and off. We chose a 100% soft interlock cotton that would be comfortable, and a neutral color that could be worn by both boys and girls.
As we started selling on-line, customers started asking us for larger sizes. They would tell us their stories about how their children with Autism, Angelman Syndrome, Asperger’s and other special needs also did the behavior of “brown parties”, and lots of other interesting ways of describing it! We truly listen to our customer feedback.
Parents were desperate for something to keep their child’s sleepers on at night. We discovered that these sleepers were incredibly helpful to parents who have children with special needs. As a result, we have expanded from the single version of the Little Keeper Sleeper with long sleeve/long pants to now include sleepers with short sleeves, sleepers with footies, three different color choices and sizes up to 11/12, which will fit a child over five feet tall! Our business not only has expanded with the sleepers, but we also created a bib that toddlers cannot take off using the same concept as the sleepers. The Zip Bibs feature a cute bear, are unisex and are primarily for babies & toddlers.
Although we only sell the sleepers & bibs via our website at this time, they have been shipped to almost every continent (come on, Antarctica!) Sleep consultants as well as hospitals have contacted us to use these with their patients. We have been involved in blog giveaways and fundraisers, including the FAST Gala for Angelman Syndrome.
What we love the most is hearing from many of our customers after they have had the sleepers for a while. Comments such as, “It’s the ONLY sleeper my grandson cannot get out of. THANK YOU for making our lives a little easier!!”, “What a wonderful blessing your sleepers have been. They are soft & comfortable, and my daughter keeps them on all night, and we are all getting a good night’s rest”. The reduction in the amount of laundry has been a nice bonus, too!”
To Save 5% on your order, enter code: LKSAT www.littlekeepersleeper.com
Enter to Win! Drawing will be made on Dec 13th, 2013.
-Two Winners will receive 2 Sleepers of their choice!
-Two Winners will receive 2 Zip Bibs!
FAST Global Summit on Angelman Syndrome
The Foundation for Angelman Syndrome Therapeutics (“FAST”) is pleased to announce that the 2nd Annual Global Summit on Angelman Syndrome will take place on Friday and Saturday, December 6-7, 2013 at the Hyatt Regency Chicago. You will not want to miss this year’s excitement as we have more free seminars, more guest speakers and even more celebrity attendees!
The Annual FAST Gala will take place Friday evening, 6:00 PM to Midnight, in the Regency Ballroom of the Hyatt Regency Chicago. Guest speakers this year include Dr. Edwin Weeber and Dr. Rebecca Burdine. Guest of Honor is Golden Globe winning actor and fellow parent,Colin Farrell. Additional celebrity attendees will be announced in the coming months! Entertainment will be provided by 7th Heaven Band. Additional entertainment will be announced in the coming months.
There will be two seminars on Saturday afternoon, December 7th, 2013, one on challenging behaviors in Angelman Syndrome and one on sleep strategies for children with Angelman Syndrome. Dr. Chris Oliver, world expert on challenging behaviors in Angelman Syndrome, will host the seminar on behaviors and Dr. Keith Allen, Professor of Psychology and Pediatrics, will host the sleep seminar, both will have a parent Q&A session immediately following. To view videos of the Educational Seminar and Scientific Round Table hosted at the 2012 FAST Global Summit on Angelman Syndrome, please visit the FAST YouTube page.
A Scientific Round Table panel will be held on Saturday, December 7th, 2013. Speakers include renowned Angelman Syndrome experts, Dr. Edwin Weeber, Dr. Scott Dindot and Dr. David Segal. Additional speakers will be announced in the coming months. The Scientific Round Table discussion will be the most comprehensive and up-to-date overview of the current landscape of Angelman research. Immediately following the informative discussion, the scientists will answer any questions from audience members in a Q&A session.
Important facts to know about the 2013 FAST Global Summit on Angelman Syndrome:
Friday – Saturday, December 6-7, 2013
Hyatt Regency Chicago, 151 E Wacker Dr, Chicago, IL 60601
Friday night – Annual FAST Gala
Saturday afternoon – 2 educational, Angelman-specific seminars
Saturday afternoon – Scientific Round Table
To purchase corporate sponsorship, please click here.
To purchase program advertisement, please click here.
To purchase an announcement for family or a friend, please click here.
Silent Auction Donation:
To download the silent auction donation form, please click here.
Admission to all seminars will be free to the Angelman community.
Tickets to the Gala are $150.00 per person. Tables of ten (10) and twelve (12) are available for purchase. FAST is releasing a limited supply of tickets at this time. You may purchase tickets by clicking here.
The FAST room rate at the Hyatt Regency Chicago is $109.00 per night plus tax. This rate is available from 12/03/2013 to 12/09/2013. This rate is only valid if you book before November 15, 2013. You may book your room by clicking here.
Rules & Restrictions:
Absolutely NO children under the age of 21 will be permitted to attend the Gala or enter the Gala venue.
Children are permitted and welcome to attend the seminars.
Tickets and table purchases are non-refundable.
Colin Farrell Ticket Giveaway:
The Colin Farrell Ticket Giveaway will be announced this September. Every Angelman family will be eligible to enter the drawing for a chance to receive either one or two complimentary tickets to the Gala. The ticket giveaway will be announced via email and on the FAST Facebook page. There are a very limited amount of tickets in this drawing, so please note that entry in the drawing does not guarantee you will receive tickets.
Guaranteed Complimentary Tickets and Lodging:
The Summit is so much fun and so educational, that we often forget its main purpose is to raise funds for research! We encourage all of you to secure Corporate Sponsorship, Program Advertisement or Program Announcements from your employer, local businesses, friends and families for this very exciting event. Individuals who secure either a $1,000.00 Corporate Sponsorship or $1,000.00 in Program Advertisement and/or Announcements will receive two complimentary tickets to the Gala. Individuals who secure a $5,000.00 sponsorship will receive two complimentary tickets plus a two-night stay at the Hyatt Regency Chicago. Click here for sponsorship forms. Click here for a Program Advertisement and Announcement Form.
The Gala will be a sold-out event. We are not able to live-stream the Gala on the web this year. FAST intends to live-stream and videotape the seminars but this is contingent upon Summit sponsorship. If you want to ensure your attendance at the event, please purchase your tickets now or win them by securing Corporate Sponsorships. If you have any questions about the FAST Global Summit on Angelman Syndrome, please send an email to info@CureAngelman.org.
CANNABIDIOL (CBD), the non-psychoactive compound of cannabis
There is a study underway to test the safety and efficacy of Cannabidiol (CBD), the non-psychoactive compound of cannabis.
Some of the experts involved are the Angelman communities’ very own specialists Dr. Elizabeth A. Thiele and Dr. Ronald Thibert of Massachusetts General Hospital. Both Physicians are members of the Scientific Advisory Committee of the Angelman Syndrome Foundation.
The study will provide a better understanding of the maximally tolerated dose and potential side effects of CBD as well as display its efficacy in two well-defined childhood epilepsy syndromes, Dravet and Lennox-Gastaut, which are very difficult to control even with medication.
Angelman Today will be following this study closely and will keep you informed.
Celebrating the Abilities of our Angels
By Anne Chatteau
(In French and English)
François a 24 ans et est UPD. nous avons eu le diagnostic quand il avait 13 ans. Jusque là, il avait vécu presque comme s’il n’était pas handicapé malgré un écart de plus en plus grand avec les autres enfants. . Il a marché à 25 mois mais le langage n’est pas venu. Sinon, il était facile et s’intégrait dans les groupes sans poser de problème. C’est pourquoi, j’ai tenté beaucoup d’apprentissages avec lui, d’autant plus qu’étant professeur, je ne concevais pas que mon enfant n’ait pas droit à l’éducation.
Il a eu un trotteur avant de marcher puis un tricycle à deux ans. A deux ans et demi, il savait pédaler. Chaque année en vacances , je lui ai apporté un vélo, d’abord avec des petites roues, puis un été, nous sommes partis avec deux vélos. l’un avec des petites roues pour qu’il puisse en faire librement dans le jardin, et un sans petites roues pour commencer à apprendre. Et tous les jours, je lui faisais faire dix minutes de vélo sur la route autour du village. Je tenais le guidon et la selle pour qu’il ne tombe pas et je courais en même temps qu’il avançait! J’ai bien transpiré! Mais au bout de deux semaines, j’ai commencé à le lâcher et il s’est mis à en faire tout seul. C’était gagné.
Tous les étés, avec son oncle et moi-même, nous l’avons emmené faire des petites promenades, de plus en plus longues. En hiver, je l’amenais presque tous les dimanche matins faire du vélo au bois de Vincennes près de chez nous. Parfois, il ne refusait d’avancer ou il s’arrêtait brusquement et celui qui était derrière manquait de tomber ou il prenait tout à coup un chemin ou il faisait demi-tour brusquement.
Bref! L’apprentissage fut long. On lui a appris à freiner, à s’arrêter au stop, à rester bien à droite (c’est cella plus dur encore mais il y arrive de mieux en mieux). Maintenant, il adore faire du VTT mais aime aussi faire de la route, restant bien sur le côté quand une voiture arrive. Bien sûr, on est vigilant et on l’avertit à l’avance des croisements, des arrêts, des voitures qui arrivent. Il peut faire des promenades de plusieurs heures sans fatigue. Au début, il jouait avec le dérailleur et on l’avait bloqué. Depuis 2 ans, il ne le fait plus. On lui règle le dérailleur pour qu’il ne puisse pas aller trop vite quand même.
Moi, j’ai du mal à suivre mais heureusement, son oncle peut encore mais bientôt l’élève va dépasser ses maîtres.
François is 24 years old and UPD. We got the diagnosis when he was 13 years old. We treated him as if he wasn’t handicapped despite of the increasingly great differences with other children. He walked alone at 25 months but the language did not come. Otherwise, he was calm and became integrated easily into groups without causing behavior problems.
I worked hard to educate him, especially because I was a teacher, I could not imagine that my child would not be educated. He had a trotter before walking then a tricycle when he was 2. When he was 2 and a half, he was able to used pedals.
Each year on holidays, I gave him a bicycle, first with training wheels and later we went to two wheels. He had one bike with training wheels so he can freely ride in the garden, and one without training wheels to start learning. And everyday, I made him practice ten minutes on the road around the village. I held the handlebars and saddle it so it did not fall and I ran! I was soaked in sweat! But after two weeks I stopped, little by little, holding the bicycle and he got to do it alone. The bet was won between his uncle and I. Each summer holiday, we go for rides, more and more.
In winter, with me, he bikes on Bois de Vincennes near our home. Sometimes he does not want to continue or he will stop suddenly and turn to see if anyone was behind him.
In short, learning was long. He was taught braking, stopping remaining on the right side of the road (it is the hardest but he gets better and better ).
Now, he loves all terrain bikes but also, he enjoys the road, remaining on the correct side of the road when a car arrives . Although, we are vigilant and warn him in advance of the crossings, stops signs and when cars arrive. He can ride several hours without fatigue. In the beginning, he played with the derailing and we had to block it. Now, for 2 years, he does not play with it any longer. We settle (adjust) the derailing so that he cannot go too fast. I have difficulty in following him now but fortunately, his uncle still can but soon the pupil is going to exceed (overtake) his teachers!
By Eileen Braun, Executive Director of the Angelman Syndrome Foundation and mother to a young lady with Angelman syndrome
It’s not just about getting through and surviving the holidays, we all want to truly enjoy our time with family and friends. How do we balance all that we think we need or want to do and still enjoy the holidays? We hope these holiday tips will help to keep you a little more relaxed and less stressed this holiday season.
Have a plan and set realistic expectations.
Decide what is important to you and your immediate family. The “Hallmark” holiday we see on TV in reality most likely does not exist. Be selective and choose those invitations that are most important and special to you and your family. Perhaps celebrating the actual holiday with just your immediate family is just the ticket to keep the special holiday more manageable and less stressful and other family and friend events can be attended outside of the immediate holiday. Try keeping the guest list to a manageable minimum so the day doesn’t become overwhelming for everyone. Try a few small gatherings on different days rather than one large, overwhelming gathering.
You know your child’s stressors, triggers and anxiety points, so remember to be a good observer and head things off before they get to the point of no return.
Don’t be reluctant to be the last ones to show up (just call ahead if you are running really late) and it is fine to be the first ones to say thanks for the eggnog and goodbye if that will help make your visit more enjoyable. Watch for subtle, escalating, non-verbal cues your child is communicating to you and others that s/he is becoming anxious and/or overwhelmed. Intervene with a break or calm, quiet private relaxation time and ask your individual when s/he is ready to join the gathering again and honor her/his request.
Don’t forget your routine.
Our children typically do best with structure and routine. Cookies and milk may well be a part of the holiday season, but eating well, getting enough rest and sticking to routines will help everyone in your family enjoy the holidays. Don’t let these routines get away from you completely, as they will be harder to re-establish once the holiday season is done.
It’s OK to take a break.
If you are hosting people at your home and your child is feeling overwhelmed or is in need of some time alone make sure s/he has a safe place for some quiet, down time. When you are visiting friends and family, talk with the hosts and identify a quiet space where your child and you can “escape” when s/he is feeling overwhelmed or in need of some quiet or alone time. Also be sure to ask about any house rules (like no food in the bedrooms) that will make the visit less stressful for all.
Clothes don’t make the child.
If your child is sensitive to certain types of clothes, or just stubbornly insists on wearing something you (or, you suspect, someone else) will find inappropriate, don’t pick a battle with all of the other potential stressors during the holiday season. While eyebrows may raise if your child isn’t dressed to the nines, the goal is to start your child out with as low a stress level as possible. Fussing over clothes, or putting her or him in clothes that you know will cause anxiety, is a tough way to start.
Augment the menu.
Whether you’re bringing a little something to someone else’s gathering or planning the gathering in your own home, make sure there are a variety of items your child will enjoy eating, especially if your child is on a special diet such as the L.G.I.T. The goal of the day isn’t cleaning your plate or trying new foods or pleasing the cook. It’s making sure your child is well-nourished, sticking to her/his diet and, more importantly, it’s about giving thanks for the good things in our lives.
Memorize this phrase, and repeat it over and over in your head whenever you feel yourself losing your cool: I do not have to apologize for being a good parent to my child. We may struggle under the weight of “advice” or disapproval from family members, but our kids don’t care about that: They need what they need. You know best what your child needs, and providing it is your most important responsibility, no arguments. Since most children with special needs react poorly to stress in their environment, particularly stressed-out parents, staying relaxed and low-key is one of the best things you can do to keep your child’s behavior in line. You can always throw a tantrum when you get home.
No martyrs here.
Don’t be afraid to ask for help or ask for a break—even if it is for 15 minutes or a couple of hours. Ask a friend or relative who understands and is familiar with your child to keep an eye out and engage her or him regularly. If you can line up a few people to take turns, nobody will miss too much socializing time. It’s not about things being perfect it is about time well-spent with those we care about and love.
Give plenty of praise.
If your child is doing a great job handling party stress, give her or him lots of positive reinforcement. Compliments, high-fives and hugs go a long way toward keeping good behavior coming. A happy child makes for a happy party, and that’s a pretty good goal.
What to do about gifts.
If you are like many families, you have a house full of toys from relatives that your child has no interest in playing. So how do we get our families to purchase gifts our children are sure to enjoy? Point your family in the right direction by creating a list of items and email it to your relatives along with the link to the store and the product number. Make it as easy as possible to purchase the item. Look at toy catalogs from the perspective of your child’s strengths and challenges. What toys seem visually stimulating? What toys have a hands-on tactile look to them? What games promote word recall? What games include player interaction? What games help foster conversation?
As our children get older, the challenge is that the things that once interested them no longer do—and that is a good thing because they are growing and maturing and developing new skills and interests! Remember, too, that it is not the quantity or equality of the gifts, but finding those gifts that are most meaningful to our children with Angelman syndrome. Perhaps a special holiday pillow, comfy blanket, special cuddly sweatshirt or item that your individual can identify with will have particular significance and meaning for her and will quickly become a favorite, treasured gift that reminds her of this special holiday!
Gift Giving Time.
Any one or more of these scenarios may describe your child with Angelman syndrome. Here are a few helpful hints if:
~Your child is unable to open presents
Relatives love the excitement of seeing the youngsters open their presents but your child is unable to do so. Earlier in the day, before the melee of gift giving starts, you might ask each relative to spend time with your child and open the present for him.
This will be more meaningful for both your child and relative.
~Your child is uninterested in opening presents
Even if you open the presents for your child, he doesn’t acknowledge that they are there. What do you do? Open the presents at home. Your family might be disappointed but tell them that he is so interested in everything else that he just can’t focus on the presents. Tell them that he will enjoy opening and playing with his gifts in the quiet of his home.
~Your child is interested in unwrapping presents but not the gift
For your child it’s all about ripping the wrapping paper. He doesn’t even pay attention to the toy. Take note of who gave which present. On a later day when your child plays with his toy, take a picture to send to the relative to say thanks. Another suggestion is to ask some relatives ahead of time if your child can help open their presents. Your child can look forward to Grandma inviting him to open the presents for her.
~Your child focuses on one present
Your child has a mound of presents but stops after opening the second present. Let him open his presents at his own speed. You might end up taking half of the gifts home with the wrapping still on them and that’s okay. Let him open the rest the next day.
~Your child is overwhelmed at everyone opening presents
Your child may be overwhelmed by the chaos of everyone talking at once and tearing the wrapping paper off their presents. If this sounds like your child, it’s okay to go to another room and watch a holiday TV show while the rest of the family opens presents. Another suggestion is, earlier in the day have your child, at her leisure, present each relative with a gift. Your relative may also decide to give her present to your child at this time. Now your child can give and receive a gift in a relaxed atmosphere. In a half hour, go to another relative and do the same.
Special Tips for Travelling Families
Medications and Medical Records
Gather your child’s medications and a copy of his or her medical records. Make sure you have enough refills for the length of trip and a few days extra in case of inclement weather.
If you are traveling with medical equipment such as a wheelchair or oxygen make sure to visit the TSA’s web pages on medical devices and Assistive Devices and Mobility Aids. These pages will be very helpful in guiding you through security at your local airport. Call your departing and arriving airport to find out what guidelines they may have. Upon arrival some of your checked medical equipment may be offloaded at a special baggage claim.
You may also need to contact your airline (by phone or web) to find out how they handle medical devices that are carried on board or checked in.
In Case of Emergency
In case of emergency make sure you find a doctor at your destination that will be able to provide temporary care. Ask your pediatrician for a referral Safety – Wandering Individual
If your child is a wanderer, consider a temporary tattoo http://www.tattooswithapurpose.com/ or purchasing a child tracking device before you travel: http://www.lok8u.com/. In case your child becomes lost, it is helpful to have a recent photo and a written description of your child’s special needs (Will she respond to her name? Will he run away from strangers?).
Before You Head to the Airport:
Call the TSA
The TSA has a helpline for individuals with special needs. Call TSA Cares. Travelers may call 1-855-787-2227 prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint. When a passenger with a disability or medical condition calls TSA Cares, a representative will provide assistance, either with information about screening that is relevant to the passenger’s specific disability or medical condition, or the passenger may be referred to disability experts at TSA. TSA recommends that passengers call approximately 72 hours ahead of travel so that TSA Cares has the opportunity to coordinate checkpoint support with a TSA Customer Service Manager located at the airport when necessary.
Whether it’s the taxi, airport shuttle driver or the skycap, make sure to get all the help you can. Bring plenty of small bills to tip anyone who is helping you out.
Check-In at Home
Don’t wait in another line at the airport! Print your boarding pass at home or check-in via your smart phone. Save yourself the hassle!
Have a backup plan
Weather, mechanical issues, missed connections or late arriving flights can wreak havoc on your carefully laid plans. Make sure you make plans for a one hour delay, multiple hour delay or a complete cancellation. Have a social story ready that will visually tell your child about the delay and what may happen next.
Take a deep breath and smile
You have spent time planning and preparing. The day is finally here. Take a deep breath smile and enjoy this special time with your family!
MAPS – Medical Academy of Pediatric Special Needs
Interview with Dr. David Berger Wholistic Pediatrics and MAPS Physician
www.wholisticfamilycare.com) We are also documenting that individuals with Down Syndrome (also a genetic condition) are also improving with Biomedical treatments, so we know that established genetics conditions can benefit from theses treatments”.
Dr. David (as he is referred to by his patients) is no stranger to Angelman Syndrome, in fact, he has worked with Dr. Jaime L. Frias (from the Department of Pediatrics, Division of Genetics, University of Florida College of Medicine, co-author of the 1982 paper in the American Journal of Medical Genetics on Angelman Syndrome), he is also my son Nathan’s Pediatrician.
“The individualized approach is simple Biochemistry, Physiology and Anatomy. Providing practical solutions of treatment. The time spent with each patient is very important. A five minute consultation cannot treat a patient effectively. A complete evaluation is necessary to find and correct the underlying abnormalities.”
Many of the chronic conditions that individuals with Angelman syndrome can be treated for are; Nutritional deficiencies, metabolic deficiencies, Mitochondria dysfunction, Methylation problems, inflammation, Constipation/diarrhea, illness, ear infections, allergies, sleep disorders, seizures and more. The ability to truly get individuals healthy is what I have found with you and MAPS Doctors. These are treatments that can be done today!
“Yes, you have just described my overall career and the chronic conditions we treat whether it is individuals with Autism, Down Syndrome, or Angelman Syndrome. The path to healing is like a marathon, I explain to my patients, it is not a sprint. It is a steady process, much like lifting up the hood of a car and checking the engine. We must look inside the individual and evaluate the intestinal track, food digestion, immune system, vitamin/mineral deficiency and toxicity. Some of these tests can be run by regular labs, but other tests require more specialized labs. Most mainstream doctors do not do these tests. Getting to the cause and correcting the problem is the goal. The individualized approach helps us do that. Treatments often include dietary changes, nutritional supplements and medications. MAPS will ensure that physicians meet a certain standard so parents can be assured they are receiving evidence-based information for their child.”
Dr. Berger is a Board Certified Pediatrician who specializes in holistic primary care, nutritional and detoxification therapies for autism, ADHD and related disorders, and immune dysregulation such as allergies, asthma and autoimmune disorders. He sees children and adults with these medical conditions. In addition, Dr. Berger works with women and men who wish to do preconception and prenatal counseling, testing and treatments to try and optimize the health of the pregnancy and baby.
He graduated from The Medical College of Pennsylvania in 1994 and did his Pediatric Residency at the University of South Florida. He started using holistic therapies at the Tampa General Hospital/USF Pediatric Clinic during his residency. He has served as the team doctor for Tampa Catholic High School, the Medical Director for a summer camp run by the Tampa AIDS Network, and the Medical Liaison for the Palm Beach County Breast Feeding Task Force. He has been in private practice since 1997, and in 2005 he opened Wholistic Pediatrics in Tampa, Florida. Dr. Berger has been an advanced practitioner of biomedical therapies, advocating the Autism Research Institute philosophy, since 1999. In 2010, Dr. Berger was appointed the position of Assistant Professor at the University of South Florida College of Nursing, and in 2011 he became Vice President of the Medical Academy of Pediatric Special Needs.
Wholistic Pediatrics and Family Care
3341 W. Bearss Avenue,
Tampa, FL 33618
MAPS – Medical Academy of Pediatric Special Needs
Locate a MAPS Practitioner at www.medmaps.org/clinician-directory
Parents seek out MAPS professionals because….
-They know their child is being well cared for by well versed and educated medical professionals at the top in their field.
-MAPS Trained Medical Professionals have undergone intensive CME coursework, based on scientific research to address and treat the medical issues related to Autism and other related disorders.
MD, DO, ND, PA, NP, RN, & LPN
Refer your medical professionals to a MAPS Clinician’s Training Course
For more information:
The Medical Academy
of Pediatric Special Needs
16251 Laguna Canyon Rd, Ste 175
Irvine, CA 92618
Toll Free: 855.447.4200
of Pediatric Special Needs
16251 Laguna Canyon Rd, Ste 175
Irvine, CA 92618
By Charles De Broin, from Montreal Quebec
Do we dads have it easy, you say.
That romantic night turns into a nine month wait for a little miracle of life.
Mom suddenly takes over and knows what to do, almost by instinct, or is it the eighteen girlfriends and her mom that make it all dizzily work.
No sleep, no more calm evenings to watch the game on t.v. but all this is so much fun.
They grow so fast and suddenly you realize something is wrong.
Mother panics, dad comforts her to no avail.
Doctors spin to find what it is that makes an otherwise healthy baby not progress as the growth curve indicates.
“Give it a while, children grow at varying rates”, the good doctor says.
Unsatisfied, mom turns to every avenue and is told that a genetic test might pinpoint the culprit that is making our baby so different than her sister Helen’s baby.
The test is done and Angelman Syndrome is defined as the source of our baby’s problem.
The questions begin… “Will he talk, will he walk, that dream of him being a lawyer is still alive isn’t it, will he be able to play baseball or soccer?????” Mom is more rational… “It doesn’t matter, I will love him no matter what, just make those damned seizure stop doctor, please!!!”.
The fear give way to advocacy, mom is a spoke-person for equal rights of the disabled in the school, the community and rattles parent teacher groups for change in a system cold and oblivious to the less fortunate. Dad starts a foundation for latter years and reluctantly accepts the defeat of not having the brightest and strongest boy on the block.
Before either of them know it their son is over 30 and both mom and dad realize that the dream of having a child in their lives forever, has come true.
He now lives in a group home, but visits regularly at home and yes, mom and dad have a tag team arrangement when their son still wakes up at 3:00 a.m. ready to start his day. They still visit the farm to see his favorite horse and in the summer visit their little country place where he can stare into a campfire and giggle as mom and dad sing campfire song like when he was a child.
And this summer’s holiday spent with mom and dad, both tired and sleep deprived after a few short nights. Both looking at each other and speaking of enjoying that unconditional love… that hug at bed-time that speaks so much of thanks and recognition.