They say that a large percentage of women who receive a prenatal diagnosis of Down syndrome have an abortion.
But I will not point my finger at the women who have given their babies back to God without ever holding them in their arms. Why? Because I understand. I know how they felt. Although abortion was never an option for us, I still wrestled with the exact same feelings these women had. I cried bitterly wondering why her and why us. I didn’t want to have a child with Down syndrome. In my darkest moments I wondered f it would be better if she died. Can you believe that? I was scared. So scared.
I had more questions than I had answers, and everywhere I looked Down syndrome was presented as a life sentence for my daughter… and for me.
When you are pregnant, and your baby has a possibility of having Down syndrome, doctors respond. Their response, sadly, is not a welcoming one. Most do not offer up-to-date information, or to connect you with other parents that have children with Down syndrome. Most doctors do not talk about Down syndrome beyond their medical experience. They talk about how Down syndrome will affect your baby — a doomed medical condition — in which your child will suffer greatly, because so many things could go wrong. No. What they talk about are more tests. Many talk about a “choice,” and they talk about making that choice now! They throw out inaccurate information, claiming 90-94% of women chose to have an abortion, as if we should terminate our babies because everyone else is doing it. That statistic has been inaccurately used and taken out of context.
Before I had Nichole, I was ignorant about what Down syndrome meant. All I knew was a stereotype, and the stereotype I knew threatened my family, my unborn baby, and me. Professionals, somehow, seemed to confirm these fears.
Nichole’s birth is stained by the many tears and emotional distress I had over her diagnosis. That small extra chromosome had enough power to knock me down multiple times a day. I believed I was not qualified to be the mother of a child with a disability. I wondered, in my fear, if I would ever be able to love Nichole the way a mother is supposed to love.
But love her is exactly what I did.
The fear, the questions, and the anxiety were moved to the side. I held a baby in my arms. A round faced, soft skinned, button nosed, bright-eyed face that captivated me. It was as if she had power over my heart. Love, joy, and peace became evident in my life; their aroma filled me with a strength I never knew was in me. She challenged me in the things I held as important, as valuable in life. Nichole transformed me.
Nichole is so much more than her medical diagnosis. She is so much more than any limitations she might have because of Down syndrome. She is an individual, with unique gifts, talents, and abilities. Her life has meaning, it is valuable, and it is hers.
I wish I knew then what I know now.
A sentiment that resonates with most parents of children with Down syndrome.
Because what, exactly, determines the value of a life? The value of a child, any child?
Should the value of a child’s life be reduced to their academic performance? Then why is the life of a child with Down syndrome held to this standard?
Should the value of a child’s life be reduced to their medical conditions? Then why is the life of a child with Down syndrome held to this standard?
Should the value of a person’s life be reduced to the job they will have? Then why is the value of a person with Down syndrome held to this standard?
What makes our hearts beat? To love and to be loved… unconditionally. To celebrate life. To experience joy in everyday moments. To have a heart that overflows with thankfulness. Isn’t this what we all long to experience in life? Wouldn’t the challenges be worth the rewards if we discovered that we had loved to our fullest, that we had given unconditional love, and that we had celebrated all of life?
Nichole has changed me. She has given me a new outlook in life. And that life is beautiful. That life is rich. That life has been an unexpected gift.
If you have been given a diagnosis of Down syndrome, and you are considering abortion, there is something I want you to know about what your life could be like…
You will experience shades of color that you never knew were possible. Your heart will expand a thousand times over .Your tears and fears will be replaced with gratitude for the child you have. There will be so much love.
We are living and loving life with Down syndrome.
We are living and loving life with Down syndrome
Some food for thought:
- If you want to adopt a child with Down syndrome in the United States, there is a waiting list. A long waiting list. For every child in the United States born with Down syndrome that is given up for adoption, there are instances where 300 families have stepped forward wanting to adopt that child!
- Each year hundreds of children with Down syndrome are adopted internationally. Hundreds!
- Not all doctors respond in a negative way when there is a prenatal diagnosis of Down syndrome. There are wonderful doctors that offer support, up-to-date information, and connections for those receiving a prenatal diagnosis.
If you are a mom dealing with a prenatal diagnosis and you are not sure where to turn, do not hesitate to contact me and I will do my best to walk with you during this time. If you had an abortion and need support to deal with grief, know that I am here for you too.
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I’m a Ds mom too and wouldn’t change a thing. Our Shawnie is a rock star and we truly feel like we hit the jackpot. Oh, that every mom would feel blessed to carry such an angel in their womb!
Melissa, I love that, “we hit the jackpot.” Yes we did!
I write this as my Joanie 11 born with Ds uses her make up case and gives me a makeover…..love it and she is so proud and happy doing it… love love love your message and all I think of is, abortion never entered my mind with the diagnosis of Ds, but I did know my life would have been changed drastically with the wondering of what my child would have been like if I didn’t have her….I wouldn’t be who i am today or who i was before….Leigh Miles
Thank you for sharing Leigh! I also would not be the same without my rascal 🙂
We say we hit the lotto too, considering the odds and all! We actually start playing the lottery since our baby’s birth in April of this year 🙂
Now that I’ve never heard! ha!
Thankyou for sharing ellen,
tears are streaming down my cheeks, with joy, admiration of you and your strength of knowing in your heart to continue with the birth and hey presto, then rewarded tenfold. I have a boy 11 now Rafael with Down Syndrome, i had no knowing prior…so it was a surprise…but we loved him more he needed us more he propelled deep into our hearts to open more to love more.
this is a poem i wrote a few years ago….he is a gift, he is so loved and we are so grateful. it saddens me that women abort and all we can do is educate and give these kids the profile they need to be informed.
Rafael
god collects the tears from the well of my heart
with the fullness of his devotion to me
he carries them to the windows of my soul
they trickle down my cheeks and fall on your
precious new skin delivered to this world
your honest eyes glance thru me
showing me the gift of your soul
i cried those tears of sadness god delivered
for the child i thought i was going to have
and cried tears of joy
for the child you so divinely are
your soul guided
only by your intelligent heart
you dance of the first beat of music
you sing on the first note of a song
you eyes talk of love and kindness
you always express your feelings
raw and real in the moment
your touch always natural and tender
your essence is as pure and fluid
as it was on your entrance to the world
blessed to be so unaffected
in a world so affected
keep shining rafael
This is just beautiful. Thank you so much for sharing this poem with me, really, thank you!
Beautiful post 🙂 I hope all the women contemplating this choice find this and are encouraged. We found out after Noah was born and were horrified to find out the statistics. I am glad to know the statistics are lower than claimed by many but they are still too high and I hope your words can help just one person find value in the life growing inside them. Thanks.
Abbie, I agree, I too believed that statistic and thought that for every Nichole there were 9 missing. But it is not true! And I also agree, every life lost is one too many. Our children are precious gifts.
I too had a post-natal dx and I related to this post. I too feel that my daughter changed my heart. She opened my world to so much beauty. God knew what I needed even when I didn’t.
I agree Tiffany, I needed Nichole!
As usual, beautiful! I appreciate your honesty and gentle transparency, it’s a gift!
Thanks Beck, and I appreciate your encouragement.
I’m in Australia & recently had my fifth child. He is the only one I didn’t have the scan for and he has Down syndrome. I don’t regret it. I wouldn’t go through with all the tests if they suspected it as I would never trust the scan or abort my child. I didn’t feel the neonatologist that gave me his diagnosis was impressed with my beliefs but that’s his problem, not mine. He is my son and I’m the one raising him. He may be only 8 weeks old but I’m loving every minute I get to spend with him and wouldn’t change him for the world! I believe we were chosen to be his family and heal our broken hearts 🙂
Yes, he will help to heal your broken hearts. And be prepared, because you will love him more and more. The first year can be difficult, learning about what this life might be like. But it will be good, and you sound like a proud mama and I can tell you are full of love for your child. Because indeed, there will be so much love!
When we were pregnant with our first, the OB was really pushing for us to do the tests to see if our child had Downs. We refused. It didn’t matter to us. We’re pregnant with our second, and it still doesn’t matter. Our daughter is “normal”, but if this baby ends up having Downs, ok. We are blessed with these children we are given.
Shandi, you are so right, all children are a blessing, regardless of how many chromosomes they have!
My poor husband didn’t understand why the OB was pushing so hard for the test. I mean, this guy was trying to sell us the moon to do the blood test at 10 weeks. I had to explain to him after we left the office that, if the test came back positive, we were going to be pushed hard to abort and berated if we didn’t. Poor guy was so upset. We changed to a midwife after that.
On another note, have you seen/read The Secret Keeper’s Daughter? Such a great book and movie.
Yes, I had a midwife too, but it was the specialist we had to battle with. I am also glad that she was the one that told us that Nichole was most likely going to have Down syndrome and not him!
And yes, I have read and watched the movie. The book is much better than the movie (isn’t that usually the case!)
Absolutely wonderful! Every mom with a DS dx should be directed to this post! I was fortunate enough to have a VERY supportive doctor who never pushed me, and offered me only support and encouragement (not the case with our perinatologist, but fortunately I only talked to her a few times!). I can relate to so much about this post. Thank you for sharing!
How a doctor approaches the situation makes a huge difference! Especially because we are wired to “trust” doctors, you know, since they have a medical degree and surely they know everything…right?
Yes, very true! My perinatologist (sp?) was a stark contrast to my OB. The picture she painted was bleak and depressing (as was the picture already in my mind). Fortunately, my husband and I went into the situation with strong convictions. Those convictions were tested BIG TIME (more than I would have ever thought possible). Today we have a sweet 1 year old that has brought so much love and joy with her 🙂 (not sure why my post says “Michelle wants you to read..beach portraits post” LOL)
My midwife was also very nice about it, she knew our values and encouraged us as best she could. She grew up with a friend that had Down syndrome and told us from the beginning, “treat her like you would any other child.” She was a gift!
And you can chose any of your posts for me to read 😉 That is why I like comment luv and have it here. You are reading one of my posts, and taking the time to leave a comment. I will come and read one of your posts back!
Thank you so much for this and your other posts. My daughter is now 3 and has Ds too. I’ve just recently stumbled across your and other mom’s blogs about living and dealing with Ds. I love the honesty – of the pain and the JOY. Both I can relate to. When we first learned out the diagnosis – when Naomi was 6 weeks old (we live in Asia where Ds is rare due to the high abortion rates)- we only had the insipid “trip to Holland.” Nice, but that didn’t capture the range of emotion we felt. I love another mom’s blog that I read recently – apologies if it was yours- that said she disliked the Ds, but LOVED her child. That’s how we feel. I wouldn’t trade my sweet girl and her precious smiles and awesome hugs for “all the tea in China”! Thank you for writing.
Thank you Sharon for leaving a comment here. What kind of support do you have in Asia? I am so glad that at least you have found some support in the on-line community. No, that is not a post I wrote, but I think I know which one you are talking about, didn’t it also have beautiful pictures of her daughter?
Very well said!! I’m going to e-mail this to my wife. We have a 9 month old baby girl with Ds and quickly we are learning that she is not a “burden” but an overwhelming joy that was placed in our lives and forever changed my outlook on life.
Paul, do you have the book Gifts? I highly recommend it, it was such a vessel of hope for me when Nichole was a baby. And yes, you will be forever changed and experience overwhelming joy. It is a beautiful life, not without challenges, but beautiful nonetheless.
Hello Ellen,
My daughter Nicole is 24 weeks pregnant. At her 20 week ultrasound, the doctor told her that her baby’s femurs apeared shorter than they should be at that stage of her pregnancy, she also said that his chin appeared to be tilted in. She referred My daughter to a high risk doctor
For another ultrasound. This doctor told my daughter that her baby”s femers were fine and he said everything looked good but he couldn’t see any bone/cartilage in the day babys nose and asked her if she wanted to have an amnio. She refused. This is her first baby. She’s 26 and very scared. She will have another ultrasound in 4 weeks to look at the baby again. As a mother, my heart is breaking for her because the doctors have made it difficult for her to enjoy her pregnancy
This sounds very close to what happened to us. I was 26, and there were some markers found at the 20 week ultrasound. Then when we saw the specialist he also found other markers, the nose being one of them (no bridge) this is where we ended up having a conversation about amnio. Once he had it clear we would not have an abortion regardless of any test results, he then said everything was fine. We had many ultrasounds after that, and there were several markers found that pointed towards Down syndrome. In our charts, you would have seen “Strong possibility of downs” scribbled at the top. I know exactly what your daughter is going through! Although her baby might (or might not) have Down syndrome, I do have a good idea of what she is going through, we were there too. For us, Nichole’s birth was the confirmation of her diagnosis. Send your daughter this way, I would love to connect with her, and maybe she needs to at least talk to someone that has been where she was at. It is difficult, and yes, there is a joy to the pregnancy that is gone because of the unknown, and especially when this is all new. If I knew then what I know now, I would have had a blissful pregnancy and I would have celebrated my daughter’s birth. dealing with a diagnosis is very difficult emotionally. She does not have to do this all alone!
Thank you Ellen. My daughter has her next ultra sound on Sept 10th. I’m feeling that at tthis point, she is still hoping/praying that the ultra sound will be a good one. I will let you know. I have found your website to be so touching and it brought a smile to my face and tears to my eyes. Thank you
It is only natural that she wants her baby to be healthy and typical. Keep me posted and again, let me know if I can offer her any support!
Hi Ellen, I’m a granddad, I have three wonderful grandsons here in England and a beautiful grand daughter in New Zealand. My eldest grandson, born in 2005, has Down syndrome. His mother, a teacher, and I set up a charity with the aim of ensuring that he and other children with Down syndrome got the best education that we could deliver. We were on a swift learning curve and over the years the organisation, The Education Centre for Children with Down Syndrome, has acquired a national reputation for the quality of our educational programmes. We have been invited to take sessions on the post-graduate course for teachers undertaking ‘special educational needs’ training at the University of Cumbria. We are expecting our third group of visiting professionals from Belgium in a few weeks and another delegation from Norway later in the year.
We believe very strongly that “Education……Is Every Child’s Birthright”
I thought I would share with you a special visit we received two years ago. The lady with a grown-up mature family had become pregnant in middle age. She had ‘the test’ and was advised the her unborn child had Down syndrome. She considered termination, however,a nurse gave her one of our ‘Special Invitation to New Parents’ cards and encouraged her to contact us before she made any decisions regarding termination. She did make contact and arranged to ‘pop in’ and see us. She telephoned a few weeks later and said she had decided to go ahead and have her baby. This beautiful young toddler was the first, and to date only, occasion we met one of our children before she was born. We have 50+ children in our extended ‘educational’ family.
On a personal note my grandson was not diagnosed until after he was born; words cannot express the joy he has brought to our family and I thank my blessings every day for him coming into my life.
Thank you for raising awareness and offering informed support to others with a child with Down syndrome.
Alexander, thank you so much for taking the time to leave a comment here! What an incredible thing you have accomplished in New Zeland, it is amazing how from one life (your grandson’s) so many have been positively affected because of your organization!
I actually keep updated with the happenings in your country thanks to one of our members in the IDSC for life. I think what you are doing is incredible and I also believe that what you are doing will make a difference in how people perceive our beautiful angels.
Thank you for all the hard work you do!
Hi Ellen! I am a mom of a 21 year old daughter with DS. I also did not know before she was born, but suspected it because of a low AFP test around 15 weeks. I was offered an amniocentesis but declined. This was our second child and it took probably 6 months for me to get pregnant. In my heart I think I knew she was going to have DS. Every trip to the library with my older daughter found me reading whatever I could find about DS. Unfortunately, there was not much current information available at the time. We didnt even have internet yet! When she was born, it was still a shock and the grief was almost unbearable. What I remember the most was a nurse who came in my hospital room with the best advise of anyone. She told me to take her home and love her! And that’s what we’ve done. She makes us laugh, and still amazes us with some of the things she comes up with! She is still in “school”- a work training program- and she loves it. She has more friends than I do, and at least 3 “boyfriends”. Of course it hasn’t all been peaches and cream, but after all the medical issues, and the occasional stubbornness, she has been a joy!
Marge, thank you for sharing your daughter with me, she sounds lovely! I also had a great encounter with a night nurse, she told me I was lucky to have Nichole, and I believed her words, they were like medicine as I was dealing with the diagnosis. Thank you for taking the time to leave a comment here.
I enjoy reading your blog Ellen. Thank you for sharing your thoughts with us. When I was writing my comment last night i was on my kindle fire and had put down all these thoughts from the early days of my pregnancy and the birth of my daughter. I just kept typing and finally when I was nearing the end of what I wanted to say, my kindle powered off!!! Ugh! So I retyped what I could remember typing, but not everything came out the second time like it did the first! I can say that I often wonder what Megan would have turned out to be had she not had that extra chromosome, but then she wouldn’t be the Megan that we know and love!
Once again, I love your honesty. I remember feeling those thoughts when we werer first told of our daughters diagnosis…I wasnt sure I wanted a child with a disability. It was hard to say that and think that out loud because in my mind as a mother, you should love unconditionally.
I am so grateful that I have her in my life, as like you, my life is better for it. I have learned and loved like never before.
Thank you for sharing xx
I cannot imagine life without her. She is the baby I always wanted, I just didn’t know it 🙂
I am blessed to be called a Ds mom too. Thanks for all the comments above. Down’s Syndrome can as well be called Up’s Syndrome because when a mother choses life over death for their unborn child, that is a thumbs UP. Our Christian is a precious pearl. Be blessed
Elizabeth, thanks for leaving a message and you are right, our kids are precious!
Very well said. My little Jenna is just a huge joy and blessing to have. We didn’t know she ha
d DS till she was born and it was hard to except but now she is 7and months old and she makes me so proud to be her mom. I wouldn’t have her any other way!
Thanks Sarah, amazing how proud I really do feel of my rascal. So incredibly proud 🙂
Hi Ellen,
Thank you for this beautiful post. My friend (dear dear friend), she and her husband have known my husband for over 25 years, she just aborted her down syndrome baby at 20 weeks gestation. I am also 20 weeks pregnant now. I am devastated. I didnt know before hand. SHe didnt tell me and my husband didn’t either, though he did try to reach out to them and encourage them not to. My husband knows how distraught I would be and feared that it would endanger our own baby. I don’t know what to do. I have not spoken to her. How can I? She says she would do it over again. That she really thinks it was the right decision. How can our friendship go forward at this point. Can it? i don’t know how. I have no idea what even to say to her. Can you advise me? Should I even try to re initiate the friendship? My husband is in contact with them, but I don’t know if I can be. We wanted to adopt the boy. We told them that. I know someone on teh Down Syndrome adoption list. I cannot believe they did not even consider adoption. Can you help advise me on how to interact with her now or if I even can? I feel she killed the baby. How can you stay friends after that?
I am sending you a private email Sandra. Your friend is most likely hurting deeply, even if she says she would do it again. You are such a great friend, many would have turned their back on her already, while many would have not even addressed the situation, this is a sign of a real friend, someone that cares.
I love your blog. You put words to so many feelings that moms of children with special needs have. I have a daughter with spina bifida and I teach children with intellectual disabilities. Some of my students have DS. When my daughter was born, I went to her bedside late one night and found an article that stated children with spina bifida didn’t have quality of life and should be aborted. We didn’t know about her condition before birth and were in Japan so we got a ride to Hawaii and stayed at this military hospital for six weeks. I was alone, terrified, praying nightly that we would both die and I get to find this at her bedside. Well fast forward 13 years and that article was a big fat lie. I’ve said what you wrote so many times. If only I had a crystal ball! I wouldn’t have mourned so much or worried so much. I am lucky to be her mom. She is amazing. It isn’t easy but nothing worthwhile ever is.
Kimberly, yes, that feeling of being alone is overwhelming, isn’t it? It is all so new, so terrifying. Yet if only we knew then what we know now. Thank you for leaving a comment!
Just wanted to say thanks for all the women who are advised to abort that didn’t. My mother was told based on scans that I had spina bifida and would die shortly after birth and that to terminate the pregnancy was the best option. Turns out they were wrong. I’m still here 25 years later, living and loving life, happy and (for the most part) healthy. 🙂 God works in mysterious ways and while I would have understood had she made the other choice, I’m glad she went with the other one.
I am glad too! My mother was also encouraged to abort me, she had many complications during her pregnancy and the doctors assured her I would have severe intellectual disabilities or some other disability.
Thank you for sharing this story. I am a teacher who has had the honor of working with children with Down’s Syndrome. There is seldom a day goes by that I am not amazed at their abilities and love. I hope this article encourages new parents out there to have hope on their amazing journey.
Ellen,
You were the first person I reached out to after my surprise diagnosis. Basically two strangers, from different walks of life, instantly had a bond not only because we both have girls with DS but we could feel each others pain, worry, and future uncertainty.
Lauren will be 3 in January and it feels like yesterday I bombarded you with questions :). You told me “if I knew then what I know now…” Honestly, I thought maybe that was your outlook myself being in the throws of pain at the time. Wow, you were spot on. Lauren is the love of my life. You also told me that “Nichole was the daughter you always wanted but didn’t know.” I feel that way now, fully.
I know what it’s like to compare my child to others with DS and how they can eat a 6″ sub in no time and Lauren still eats stage 3’s. on the other hand, Lauren’s gross motor skills are awesome. We was walking at 18 months. Her pediatrician was amazed. So even if your child isn’t up to par in one area, I bet they rock it in another area.
Sorry for the long comment. I just wanted to tell you that every word to told me stuck like glue and I have nothing but respect and gratitude for you. I will never forget you.
P.S. Let me know the next time you’re in the MLPS area. I’d love to meet you and your gorgeous girls.
Thanks a million,
Rya
Oh it is so good to hear from you! I wish I could reach through the screen and give you a big hug!
Not sure when we will be back there, but I will certainly let you know because I would love to meet your kids too!
You made my day!
Dear Ellen,
I heard people call DS kids “sunny children” for their smiles & spirit but u come across as one sunny mum. I wish I could borrow your cheerful disposition but the more I try to educate myself on the subject, the more desperate I become. I’m six months pregnant and only had a possibility of DS raised once when my first blood test came back with an elevated hgc. Everything else was fine and the doctors tell me not to worry but, of course, I do and what troubles me the most is my inability to embrace my baby what with the same acceptance and love as u and other parents do. How did u arrive at that point? How did u deal with your doubts and fears? How did u deal with shame if u ever experienced it? Of course, by no means I’m suggesting that u should, it’s totally irrational to have it & there is nothing one can do to avoid DS, and yet this sense of failing – uncertainty over the diagnosis and the inability to fully accept my child – is haunting me. I guess what i’m asking really is if u can offer any advice on how to develop love for both my child and myself as his mother
Ona, what you are feeling is normal. There is nothing, absolutely nothing to be ashamed of. Dealing with a diagnosis is one of the hardest parts of this journey. Crying, doubting, questioning, it all comes with the loss of the typical baby we thought we would have (the baby we wanted). Did you read Rya’s comment above yours? I talked to her many years ago, she was right where you are now. And don’t make mistakes, I was there too. I am going to email you privately so we can chat. but on the mean time, let me tell you that if your baby was to have Down syndrome, once you are done grieving, you won’t believe the love, the amazing, fall on your knees in awe love you will have for your baby, and you will be so glad, oh so glad that you get to have this child in your life. You will expreince shades of color you never knew were possible.
Hello Ellen, I found your blog through the DSAM2013 blog hop.
Your post has given me a lot of food for thought. It seems barbaric in this day and age for a doctor to suggest a termination because the baby has Down’s Syndrome.
Your daughter is a little miracle for all the world to see. 🙂
I too would have been terrified had I known, and of course we trust our doctors implicitly, so when they suggest a termination, we tend to believe this is the only option.
I am glad I didn’t know and am now proud to be working to make our government change the way they present testing and support potential parents.
Hayley
DownsSideUp.com
Great post! Prenatal Partners for Life will also partner volunteers who have a child with DS (and other conditions, too,) with people who have a prenatal diagnosis and want support (and postnatal support, too.) They have a website and are on facebook.
This is such a powerful piece! Any mother of a child with disabilities will appreciate it! Love transcends any challenge, as you have so aptly demonstrated. It only takes courage!
Thanks Maria, love is powerful indeed.
Hi Ellen
I am so glad I found your blog. I am pregnant and due December 16, 2013, or baby boy was diagnosed with trisomy 21 and as my due date approaches I can’t stop thinking about all the negatives on Down syndrome. Do you have any advice?
Yes, we need to get you connected with people in the Down syndrome community! and with other moms that have been where you are right now. I know well how hard it is to be going through the negative feelings, but it will be good, and you will be so thankful for your baby.
Ellen–
Just found your blog and have been reading for hours. Thank you so much for your honestly. While my journey with having a “less than perfect” child started a year and a half after birth when he was determined to be “at risk” for autism and finally received a diagnosis a year later, I struggled with the exact same feelings of doubt — was my child less of a human being? When my child’s pediatrician raised the possibility of autism she said, “I’m sorry.” Those words haunted me as I sank into a deep depression. Why would she say that if he was NOT less than human? He was broken. I so wish she would have said “I’m sorry you have to go on this journey.” I know her outside of her practice and I truly believe that is what she meant, but without her saying that I was left to fill in the blanks. I wish doctors would be more thoughtful in their comments to parents of special needs children. They are first in line to discuss special needs with parents and can make a huge difference in how parents come to terms with diagnosis and embrace their “different” children. They need to teach that in medical school. It is what it is and saying “I’m sorry” does not change anything or help in any way. My son is amazing — he is in love with life and has taught his parents who are glass-half-empty people a lot about humanity.
Yes Laura, I wish that medical school prepared doctors this way too!