No doubt there are angels living among us. God gifted me three in my children! I learn more important stuff from them and feel more joy on a daily basis than I did in all the years preceding motherhood. Combined with all the other angels that cross my path on a daily basis, I consistently feel as though I’m living a glorified life.
Hi, I’m Maggie — Jill of all Trades: Stay-at-Home-Mom, Non-professional Teacher (General and Special Ed), Amateur Therapist (OT, PT, Speech), Closet Artist, Part-time Blogger, Freelance General Contractor, and Handy Ma’am for Hire… Whatever is called for on any given day is my vocation. My husband, formerly known as “The Captain,” morphed to “Lou” awhile ago. My “Old Soul,” 18, is the angel sent to help me with “The Boys Young Men,” my 15-yr-old identical twins who also happen to have been blessed with an extra 21st chromosome (aka: Down syndrome).
Some hear of our situation and mistakenly pity us. While I cannot magically correct their erroneous thinking, I can write here sharing our experiences that we may help others embrace their lives and loved ones affected by Down syndrome, advocating on behalf of My Boys Young Men and introducing you all to this absolutely wonderful phenomenon I call my life…
This blog is dedicated to my family, my angels, and all the richness they bring to my life.
Take A Walk on the Happy Side 
Hi Maggie,
i just found your blog. I have twin girls who are 19 and both have down syndrome. i would love to chat with you. I live in Pennsylvania..neare Pittsburgh pamdegeorge@comcast.net
LikeLike
Hi Pam — Went looking for your comment after finding you on FB. A meeting is imminent and I’d LOVE to chat with you about your inclusion experiences. Can’t wait to connect online and, eventually, in person.
LikeLike
Dear Maggie:
I also have twin boys who are now 23. Only one of them has Down syndrome. Over the years I have experienced and participated in Special Olympics, scouting, school events, sheltered work shops, employment, and now independent living for my son. I have also been a speaker on the subject of what happens to a family when a child with a disability is born. I have been encouraged many times over the years to write about my son and the many expereinces I referred to. So, a couple of years ago I started my book. Writer’s block can be a tough thing especially if you aren’t a writer so there have been some long periods where it sat on the shelf. However, I seem far enough along that it is falling into place. It opens with the surprise, disappointment, hard work and progresses through all the stages my family and the many families we befriended over the years have gone through to discover the “angel” you speak of.
I just discovered your web site and while impressed I also see how much work I have to do to complete my task and do it well. I’m not sure it will be “Oprah” material but I am determined and if it helps one family find the joy each of our angels can bring it will be worth the effort. I hope as I stay connected I will hear other family’s stores and share some of mine. This is my first day on your site so I am excited to follow it in the days and weeks to come.
Bruce
LikeLike
Thanks for following, Bruce. Hope the information I share helps you on your journey and the information you share helps me and others. You’re way ahead of me with a 23-year-old so I’ll be interested to hear about your experience. Interestingly, early intervention, and changes in treatment, care and inclusion are significantly changing the outcomes for people with Down syndrome from 50, 20 and even 10 years ago. I believe there are no limits… and that, I hope, will make all the difference!
LikeLike
Maggie:
I wonder if you know or if you could ask readers of your blog who are a few of the foremost authorities today on Down syndrome today. Doctors, University professors or who is most widely published today. It will help me for my resarch on my book.
Thanks. Bruce
LikeLike
Hi Bruce — I’ll ask here in a separate post and at The Center for Community Inclusion where I am a contractor. Will provide a list in post style of the results… but right now, the lttle boy nestled in the crook of my arm wants to watch iCarly on my computer.
LikeLike
Maggie
I’m sort of a technoidiot so haven’t “blogged” before. If I post a comment, does everyone who visits your blog site see my comments or if I want them to do I ask you to post like I did in my last request. thanks.
Bruce
LikeLike
Everyone can see it but only if they visit that post. If you give me a set of questions to post, I can post it for you. Let me know. Email me at marshallhagan and that funny at sign then verizon dot net to chat about what you’re looking for.
LikeLike
Hi Maggie,
I wish this email was bringing better news, like lotto winnings or something; but no. Read a fellow bloggers post and the article she refers to made me think of your wonderful boys. I have just been in tears this morning. Thought you might like to have a read. Take care, Cari.
http://caffeinatedautismmom.blogspot.com/2011/05/mom-sues-over-her-child-being-born.html
LikeLike
I went over to caffeinatedautismmom, read the article and commented. Disgusting! Though I see the judge’s point… it’s not the place of the medical professionals to withhold information or to make that decision for the woman BUT, that’s a bad decision that will certainly result in a rash of lawsuits from parents disgruntled over their child’s disability. The “Disability is Natural” campaign has its work cut out! I wonder if she could blame and sue her husband for inept translation and/or misinformation? And I wonder if Child Services will be watching that child to ensure she/he is not neglected or abused to death the way that last poor child with a disability in NY was left to die! And I wonder if she realizes she and her husband are, at any given moment, just a second away from becoming disabled themselves? Wouldn’t THAT be ironic!I f she gives her child up for adoption, does she get to keep the money or does the money follow the child for the child’s care? Was the money awarded as a function of the child’s care or was it compensation to the parents for the trauma of having a child with special needs? A tragic and curious case.
LikeLike
Maggie,
I just posted a comment on your thread about Holland and had something I wanted to share/ask you and your readers. My son is only 3 and had a tough first 2 years. No heart issues but very serious breathing issues. He’s a different child now as he has grown and gotten much stronger. So while I have a lot of experience talking to my friends kids and other adults about Down Syndrome, I’m finding it tougher when we go to parks and kids are playing and he jumps into the pile. A lot of strange looks from other kids and just yesterday i heard one turn to another and say why is his face so weird. This child was only probably 4 himself and the older child took her brother aside and told him not to say things like that. But my question is, do I try to talk to the other kid? Do I look for his/her parent? Or do I eventually become numb to it and just let it go as long as nothing mean is being said? Now If my daughter had been there we might have had some trouble. She gets very protective and I’ve had to reign her in a few times when she got upset about kids talking about her brother.
Thanks,
Mike
LikeLike
I choose to address comments like that by talking directly to the uneducated party about all the similarities between my child and him/her, instead of focusing on the differences… “His face is no wierder than yours! He has 2 eyes, a nose and a mouth all in the same places you have yours. He can see and smell and talk just like you…” etc. If the comment is about some delayed capability, then I tell the child (or, too often, the parent) that My Son has Down syndrome which means it might take him a little longer to learn to do some things than it does others… but he’ll learn it in his own time. My daughter has witnessed my advocacy and she follows suit. Like yours, she is very protective of her brothers. Interestingly, she once asked me NOT to tell one of her classmates about her brothers’ Down syndrome (he asked, “what’s wrong with your brothers?”) b/c she said he wasn’t a safe person and would do mean/bad things with the information. Brilliant! There are certainly times to speak and times to hold our tongues.
As for talking with the parents, if the parents are involved in or heard their child’s comment, then I engage them in a friendly way. I choose to ALMOST never let an opportunity to educate and advocate for my kids to pass by…. because I believe THIS — exposure to the truth — is the way we will change the world. But, that’s just me hellbent on advocacy. These friendly conversations inevitably turn out well, with the other parent coming away with a better and much more personal view of what it means — and what it doesn’t mean — to have Down syndrome today!
LikeLike
There was a study done in England that said prejudice against people with special needs and/or segregation begins to form and set-in as early as first grade. This is why I choose to address the child/culprit directly. AND, most often, a parent is close by and joins the conversation b/c they are generally on alert (as they should be) when a strange adult talks to their child on a playground or in a public place. We have a better shot at educating the children correctly the first time than changing the antiquated mindsets of opinionated adults.
LikeLike
Thanks. We spent this past Labor Day weekend in PA at a nice family resort. They had tons of activities for the kids, a DJ each night, a pool, a lake, and meals are included. Fun weekend. While on the playground with my kids, and 8 of their cousins, there were 3 other kids playing amongst our family. I was following my little guy around as he tends to become even more fearless when his sister and others are climbing on the play ground. A girl about 10 kept looking at him she would smile a little then look at me and look away. So I thought if she came over I could use this opportunity to try your advice. Sure enough she came over a few minutes later with her 2 little sisters who were about 3 or 4 and 7 or 8. The little one went right to my son to say hi and he gave his best goofy grin and big waving HI!!!! Then of course went right in for the hug. Which she took in stride and gave him a quick hug back. The 7 or 8 year old was a little more cautious and just waved hi from a few feet away. The oldest then asked him his name which only I understand when he says it so I gave his name to which he gives a proud point to his chest to say that’s me! She asked how old he was and then as is he ‘disabilitied’. I almost laughed out loud and said yes he has Down Syndrome. She said she thought so. (I later explained to her that the proper terms are ‘he is disabled’ or ‘he has a disability’) Her Uncle has DS also but he lives in California with his parents. She said she saw him a few years ago but the other 2 had never really met him. So she wanted them to meet my son. So I talked with her for a few minutes about DS and then the little one was climbing the slide steps and my so was following right along. So as much as I wanted to apply your advice she was kind of doing the same for her Uncle with her sisters and introducing them to someone with DS. It was a nice moment.
LikeLike
Mike — I’m so glad you wrote back and told me that! It sounds like a wonderful experience all around… those children you met and the resort. Brava for her for approaching you and bravo for you for sharing. It always makes me feel good when I know I have educated someone about Down syndrome. NDSS has it absolutely right… our children are more alike than different. An extra chromosome does not change that truth!
FYI – When I speak to adults who have an older and/or distant family member with DS, I do say that times and treatment have changed significantly. Now, we know people with Down syndrome are capable of learning and achieving much more than was once thought; now we know how best to educate children with Down syndrome and their futures are much brighter!
Good luck to you and yours, Mike. You are on a wondrous journey!
LikeLike
Hey Maggie,
Just wanted to drop a note to you and your readers. Not sure if you heard about the GQ ‘incident’ this past summer, (morons) but here is a link to an incredible response sent to their editors. This is the quote from the GQ article, “Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything.”
http://childrenshospitalblog.org/mock-my-pants-not-my-sister/
I read a few posts from people on different sites about this and they said how this is a lack of education about Down Syndrome, but sadly I think it actually hurts a little more because it is a slightly educated comment. This isnt the usual stupid use of the R word. This person knew enough about Down Syndrome to know that there are extra chromosomes involved. They knew how much those words would sting and that’s why they used them. I was very disappointed to read, that outside of removing the words from the online version of the article and responding to the individuals who took the time to complain to them, there was no formal apology. No retraction or regret printed anywhere publicly. I feel that the same effort in printing the original article should be given to the apology.
Didn’t mean to go on about this, just wanted to get your opinion on it.
Mike
LikeLike
Hi Maggie,
I just stumbled upon your blog. I’d love to include you in a summer blog hop series I am hosting for both parents of kids with special needs (- I have a daughter with Down syndrome) as well as adults with disabilities, many of whom are activists (- I am deaf and a disability activist).
If you are interested, please let me know – I will send you more information.
All the best,
Meriah
LikeLike
Would love to participate. Send me the details at marshallhagan the funny little at sign, then verizon dot net. Look forward to hearing all about it.
LikeLike
Hi Maggie!
I was just referred to your blog by my sister in law. I have 18 month identical twin girls who happen to have Down syndrome. I look forward to going back and looking at some of your posts.
Look forward to catching up soon!
Cathleen
LikeLike
Congratulations and welcome to the Happy Side. I used to think my 10-year-old daughter was sent to help me with The Boys… Now I’m sure The Boys were sent to help me survive her. LOL. It’s a wild and joy-filled ride… enjoy every minute!
LikeLike
Hi Maggie, I accidentally run on to your blog. So interesting to read and learn from “same stories”! We live in Greece and have 3 boys, two of them are identical twins with down syndrome aged almost 4. Life is smooth so far, our. Our moto is “its easier than you think” although we know that sometimes its not…
LikeLike
Congratulations on your beautiful boys and family! It truly IS easier than most people think… I often find myself puzzling over the notion that the twin-thing is more work than the Down syndrome thing. In fact, it’s fascinating to have identical twins and the DS only adds to the joy and certainly adds an element of good humor! (Sorry I’ve been off the writing schedule but Hurricane Sandy hit the south shore of Long Island where I live pretty hard and we’ve been without power for nearly 2 weeks. Hope you stop by again.)
LikeLike
Hi Maggie! I just discovered your blog yesterday and I’m starting from the very first post and plan on reading each and every one until I catch up. I’m a social worker and my specialty is developmental disabilities, mostly with adults. My absolute passion (probably in life) is Down syndrome. As a graduate student at Adelphi I interned at the Association for Children with Down Sydrome (ACDS) in Plainview. From day 1 I was in love with the “chromosomaly enhanced” beauties I had the privelidge of working with. In fact, it’s my dream to one day adopt a baby with Down syndrome. I have to say, the first thing I thought when I found your blog was how lucky you are to have two babies with DS! Anyway, from what I’ve read so far, I see you’re in the Queens/ LI area. Even though I’m a total stranger, I’d love to meet you and the kids somehow….and I was also wondering if you had any suggestions about organizations or agencies specializing in DS where I could apply for a job or volunteer. I hope to hear from you! Thanks for sharing your stories and your kids…they’re all beautiful!
Tracie
LikeLike
Hi Tracie – I emailed you but deleted your email from the comment (for your safety). Thanks for visiting and DO stay in touch. We need teachers and therapists and social workers to understand the issues we parents of children with DS face in educating and caring for our children. That said, for adoptions of children with DS, visit http://reecesrainbow.org/. Amazing organization!
LikeLike