Posted in Motherhood, The Up-side of Down's

Had Enough of Holland?

Welcome to Holland – NOT!

I am not Holland!
My gorgeous boy – growing up fast.

(Extract from Emily Perl Kingsley:) When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives.

You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.

“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

This is a sweet post, written back in the 1980s by Emily Perl Kingsley, with the benefit of hindsight from having raised a son with Down’s Syndrome in the 1970s.

Emily’s passion and commitment was also reflected in a film that she wrote, which followed a fictional couple and the struggle they had coming to terms with their child’s Down Syndrome. Emily undoubtedly did much to break down barriers – for example – it was her job as a writer on Sesame Street that enabled her to include children with Down’s Syndrome in the show.

Journalists wishing to use her analogy in explaining the effect of disability on parents often cite her ‘Welcome to Holland’ essay. It was recently tweeted – which inspired me to write this reposte.

I first heard it when I watched Emily’s film ‘Kids Like These’. The actress off ‘Cagney and Lacey’ – (the mommy one, not the blonde bombshell with relationship issues) played the part of the mum.

At the time, I thought it was heartfelt, but I couldn’t and didn’t want to relate to her sentiments. It seemed to me to be about different time, when learning disabilities were seen as a Major Big Deal. Children with severe and even mild intellectual disabilities were routinely incarcerated and excluded from society apparently to save their parents from the challenge of raising them and relieving society of the burden of ever clapping eyes on them.

I viewed the essay as coming from the culture and time it was written – in middle class, white, over-achieving America; where the parents remembered being advised by their paediatrician to give up their son after a very poor prognosis was presented to them.
The mother portrayed in the film became evangelical and campaigning – and rather pushy as I remember.

Her son was put under a lot of pressure to achieve and prove society wrong. He became a Down’s Syndrome Ambassador.

I can imagine – and have great sympathy for the family and the enormous battle that ensued, to gain services and support when they chose to raise their son and help him be the very best he could.

What irritates me (yes now we are coming down to it…) is the fact that, 25 years later, this same advice is still being given to new parents with disabled children and is on the front page as an introduction to the American National Association for Down’s Syndrome. It just makes me feel that we haven’t moved on.

It’s time we all Got Over It.

Back in the 60s and 70s perhaps being a pushy parent was all about dreaming that our children were going to be the embodiment of a cultural gap-year in Venice; all art exhibitions, handsome men and nights at the opera. Back in the real world, babies scream and poop and throw up, challenge you in every possible way and deprive you of sleep, money and time.

Eventually as they grow, kids may drop out, do drugs, get pregnant (or not) and grow up hostile and rude. And that’s just the high achievers. Modern kids sometimes don’t even bother to grow up, they just carry on sponging off ma and pa, commenting on how disappointed they are with their parents while ‘failing to launch’ their own lives. I know of no parents not having ‘issues’ with their darlings, regardless of their intellect.

The idea that having a disabled baby presented to you means all those expectations are left unfulfilled, like thinking you are going on holiday to Rome and rocking up in rotten Rotterdam – well that’s just the way it is for parents of real kids. Full Stop.

Kids are a pain. I know this, because I used to be one. They do their own thing, in their own way and probably on occasions deliberately to annoy their parents. We may dream of Italy, but as I heard once, ‘head for the stars and you may just hit the trees’. That’s life.

Having a child with a learning or intellectual disability is so not Holland compared to Italy. I know, because I have experienced four incredible and unexpected outcomes on the rocky road of motherhood that I’ve been staggering along for the last 25 years.

I’ve had sweet, compliant and delightful; rude, stroppy and willful – and mixtures of all of that too.

There have been boys and girls. They’ve been happy and helpful, (in the afternoon) and sullen and sulky (by bedtime). They’ve been born silently, poetically dead and born rudely, cutely alive; normal and bouncy and even been born abnormal and bouncy, so I feel I’m qualified to comment. I’ve been handed not a ticket to Italy and ended up in Holland, but the Round the World option. I’m still travelling, still loving it and still rocking. It’s called being a mum.

So, if you are the new parent of a disabled child, particularly with Down’s Syndrome, and you are looking for inspiration, you do not need to look further than into your child’s eyes to know the answers. You need not ever feel disappointed. Becoming a parent isn’t a holiday. It’s the moment you learn to leave your own needs and wants for quite a while ‘on hold’ and concentrate on this little person who needs you to prioritize them.

Watching my son achieving at his own level is humbling to me and the rest of the family. He cheers us all on too and makes our world warmer, sunnier and brighter.

I know how hard it is for my son to achieve things that ‘other people’ would value but I have learned to accept that. I have never for one moment considered that my son’s life is of any different value to anyone else’s, even if other people do.

What maddens me is that his challenging behaviour and limited abilities bar him from so much that he could and would like to do, not because he sees himself as a problem, but because other people do; when systems and processes and ‘rules’ exclude him.

For too many years, children born disabled have been doubly effected by the lack or limited opportunities that would perhaps have created new pathways in their brains and raised their cognitive levels, memories and experiences because brains grow by being stimulated and challenged, not protected and left dormant. Too many spend way too much time being ‘cared for’ rather than being actively engaged in the joyous process of living.

I am already too busy challenging my son to be the best version of himself possible along with keeping my family loved, stimulated, safe, fed and cared for to take on the world but I would like to ask of everyone to be kinder, offer us  sensitivity and give him a chance.  I challenge everyone I come across to let my son be involved and included if they show willing.

This is my belief: every parent wants their children to be the best version of themselves and be happy. To live, be safe, away from harm but right in the middle of fun and a future.

We owe it to our children as they grow up to help them become independent of us and able to take on the world with confidence. We start as the hub of their wheel, but we need to gently become just one of the spokes.

We need to stop looking for our own fulfillment during that time and be grateful for the wonderful experiences of having a child because many try and fail to become a parent in the first place and suffer way, way more pain than an unexpected transfer from Fiumicino to Schiphol.

And here’s the secret: my son, of all my children, is the only one I can ever feel 100 per cent confident that I’ve truly made happy and fulfilled. He delights in pretty much everything I can throw at him. He teaches me every single day. I feel honoured that he chose to exist in my life, despite all the odds.

I’m trying to create some independence for him as he enters his teenage years so that he can start dealing with the world without me at his elbow all the time and I need society – everyone – to help with that.

When we step out of the door and have to deal with the inflexibility and fear of the Real World (on occasions, by no means all the time) I sometimes feel, frankly, on another planet, not an interesting flat European country with excellent public transport, beautiful canals, bilingual locals and lots of bicycle lanes. If only.

The debate needs to move on. No more Holland analogies please. And a bit more action to get society kinder, safer, slower to condemn and quicker to catch on. I need society to be less hung up on ‘achievement’ and more interested in senses, how people process sensory information and stimulus and why my son may react in an unexpected way. I need society to understand that not everyone can talk fluently and that not everyone is going to conform to behavioural ‘norms’ and get over it and move on please.

Then we can all pack our suitcases and go on holiday. My family hasn’t had one for many years and I feel we really need one. Holland or Italy. Or perhaps both.

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Author:

Surviving in the remote but glorious Pembrokeshire 'outback' isn't enough - I wanna thrive and feel happy to be alive....I hope my posts make you feel that way too :-)

38 thoughts on “Had Enough of Holland?

  1. I love your blog sarah so true and so inciteful. Unfortunately i think a lot of parents Mums and dads lose sight of the fact that they chose to have children and its their responsibility to be there and to use your analogy put their own needs and wishes on hold and guide nurture and ENJOY their children (Able bodied or disabled) I am going to meet up with you and your family this summer 2012 no excuses XXXX Claire

  2. Reblogged this on Tales from the Crazy Side of Life and commented:
    Today I read a post called “Had Enough of Holland?” Let me tell you, the author Sarah Hoss, hit the nail on the head! This quote: “What maddens me is that his challenging behaviour and limited abilities bar him from so much that he could and would like to do, not because he sees himself as a problem, but because other people do; when systems and processes and ‘rules’ exclude him.” Really says a lot.
    I really don’t know how far we’ve really come since Emily Perl Kingsley had Jason or even since I had Nick (18 years ago), but what I do know is we, as a society, have a lot farther to go before we can truly say those with a disability are treated and valued as typical members of society are treated and valued. (Then again, I wonder, do we really want that for our loved ones {remembering how even the typical are often tormented and not valued}.)

  3. Thanks for reading, replying and re-posting. When I wrote this, I was wondering if I was the only one feeling like this. Reading your comment has made me realise I am not. Our society tolerates so many levels of difficult behaviour, objectionable, self-defeating and deeply damaging stuff from drunkenness, noise, littering, theft, drug-abuse, dangerous driving, etc….and yet parents of teens with sensory behavioural issues and learning disabilities end up locked in their homes because society seems unable to take challenging behaviour or scenarios that don’t fit into cultural ‘norms’.
    I don’t really get it and it’s beginning to impact on life for me and my family now. We need to come up with some strategies and answers I know. Any ideas?

  4. I read a lot of articles written by parents and carers of children and teenagers with various ‘learning disabilities’, with very few actually written by the guys and girls themselves. When I do come accross writings by people with ‘disabilities’ it puts things into perspective and I learn that as a mum of a child with Down’s Syndrome, I cannot possibly know how my daughter feels or what is best for her untill she can communicate this herself. The more creative works, be it music, poetry, photography or writing, that our children and young adults can get out into the mainstream media then there, I think, can be a beginning of true understanding. Bellamum

    1. This is a very important comment, and goes to the heart of what limited choices means in the long term where voices are not heard or documented. It raises so many feelings and thoughts about access to the arts and the development of communication skills and the ability to express oneself through the media, the development of the skills necessary to participate, wow, this is something that I will be thinking about a lot. Thank you Amanda.

  5. Awesome post! I totally agree with it…the difficulties are out THERE, not in here. I have 2 disabled kids, with Down syndrome and autism, respectively, and my philosophy is to throw them in the deep end of the pool. Of course, if they are sinking, I help them out..but more often then not, they manage just fine after a time of adjustment. The problem were those AROUND our family and the difficulty they had adjusting to my kids’ behavior – the ones they had not mastered: family that didn’t get our kids, we were bad parents, they were wild kids, “what’s wrong with her” questions from kids while in-earshot parents looked away. Right now, in the US, we are fighting this strange battle, as autism rates ratchet up the number of kids in need of aid in school, while the bar for the “perfect” child also reaches new highs. Who pays the price? The kids. Neuro-typical children are exhausted by their early teen years, and LD kids are still excluded. We are blessed to have found a school that integrates our girls and lets kids be kids.

  6. Aw thank – you GIna, I really appreciate your response to this, which is something that’s been rattling round in my head for quite a while and it is beginning to feel like an additional hurdle for me, because my son is getting big and determined and ‘conspicuous’ which is a challenge while I am (like you) still determined to throw life experiences at him as a normal part of family life.

    Sometimes, we give up and go home. I find myself thinking ‘never again’ though the next day we get up and just do it all again! Because it can be so far beyond what is considered ‘normal’ I feel pressure, in addition to managing and coping, to try and make sure that we are not negatively impacting on others and it dawned on me, that in doing so, I am taking on other people’s limited experiences and hang-ups – as if I don’t have enough to juggle already.

    We had a case in the UK recently of a teenage child with autism being man-handled, hand-cuffed, restrained and arrested by the police. An extreme case I realise, but one that sent shivers of fear through me. Do we end up building little institutions all of our own? Safely away behind locked doors where we become invisible and the rest of the world can breathe a sigh of relief and carry on ‘as normal’?

    And by doing so do we create a double disability – the initial one and then the one due to the child being deprived of the experiential learning that all children have the absolute right to receive. What will happen to our sons and daughters when we are no longer around? It is now that we need to be considering – and we need society to help us.

    I’m so glad that you have found a good school for your precious girls and I wish you and your children all the very best x

  7. I appreciate the frustration with the “Holland” essay, as I too had it handed to me over and over after my daughter was born. I feel your gripe has less to do with this essay, and the woman who wrote it, as it and she did MUCH to assist families like ours, and more to do with a world at large that continues to discriminate and stigmatize. Nothing – No Thing can prepare you for parenthood. This is just one way those existing in that ‘Real World’ might get a tiny modicum of understanding, that for some, the delusion of Italy (which I too believe all expectant parents get a rude awakening from at some point) was just desecrated a little sooner for some than for the rest.

    In addition, this essay DOES ask for a kinder society, a more compassionate eye, and even a request for education. This essay is far from the problem. It’s that ‘Real World’ you speak of. There is no elixir, not even if you wrap it up in a bow with tulips and Rembrandt. Rather than take aim at an essay designed to embrace and love and offer comfort, solace even, perhaps you should blog about those that spend their lives spewing the kind of nonsense that perpetuate the negative stereotype and hateful attitudes…Philosophist Peter Singer? Rush Limbaugh perhaps?

    1. Hia Katherine, I really appreciate you taking the time to reply – and I totally empathise with your comments too. As I hope I made clear, I thought Emily’s essay was very sweet, it is just that I feel that all these years later, we need a new manifesto and need to be clearer about prioritising raising these children of ours to be their absolute best – and as it is often said, it takes a village to raise a child. Too many parents feel sidelined and end up withdrawing into their own homes with their disabled kiddies, and this doubly disables them.

      As you say there’s no magic elixir – but society, as a whole, could do so much to nurture and help raise our children and being willing to accept difficult behaviour with good grace would be a fantastic starting place.

      1. Totally agree with both you ladies…it is more in the educating society than “containing” our kiddos…DS comes in many shapes and forms, some are harder to handle than others..I guess I just lucked out with my boyo, ’cause he is friendly, funny, gregarious, a pest at times, a gentleman at others, sometimes stubborn, sometimes eager to please…never a bully or violent…which I thank God for. And yet, as easy as I think he is to bring up, there are still folks in our church community who have zero tolerance for him…amazing that they call themselves Christians, but there u have it! Our kiddos our so cute when they are little, but they don’t stay little and cuddly for ever (Rob always asks for a kiss/hug though and I hope he NEVER outgrows that one!), and when they do grow up, all pimply and hormonal, suddenly they are not so likable any more, and “there’s the rub sister”. As parents it is our obligation to continue to advocate for our DS young people to be challenged and pointed into circumstances and situations which will encourage further development and enrichment in every day life, just like anybody else…much has been done to tear down the stereotype of the “drooling village idiot”…BUT much can still be accomplished.
        somebody said…”it takes a village…to raise a child”…that is so true, even though some in my church community might not be as understanding as I think they should, there are still many who accept him as he is, and when that happens a mother’s heart glows, it is a like a gift.
        Just this morning my 14yo son Rob spend most of his time from 9am until lunchtime, working with another young boy 12yo. who has taken a shine to him. Together they worked in the community kitchen, carrying and fetching food stuff and doing chores like washing potatoes, mopping floors, etc. the younger boy, giving my son who is older, the instruction he needed without being overbearing…that just warmed my heart seeing them working like that and actually performing a task which was both helpful and needed.
        Unfortunately this does not always happen with ALL individuals in the community but when it does, it is like a gift from God, telling me not to despair – change does come in its due time. My prayer is that this kind of change will extend beyond the confines of our own small communities/villages.
        Thanks for letting me share.
        All the best to your families and special kiddos, from warming Alaska
        gri buongiorne

  8. The absolute first information I ever received about Down Syndrome was the Holland Poem. I know it was meant to be comforting. To be honest I found it comforting only in the since that it was indication that others had gone through what I was about encounter and came out the other side. It really should not be the first thing someone who has really no clue about Down Syndrome is given after they are told their child “most likely has Down Syndrome we have sent out a blood sample to be sure”. On the other hand the list of all the medical conditions that a child with Down Syndrome could possibly deal with in the course of their life, along with the percentage of likelihood, is not the first nor even the second thing I feel I should have received either. I know now that there are people that are dedicatedly trying to get up to date information into the hands of families that need it. It just seem to me that there is a very large gape in that desire and its accomplishment. It also seems that there should be more than just cold facts given to families, especially since Down Syndrome has such variable presentation. The internet has made finding some information easier but as it usually does it also clouds things up with misinformation and old information too. I do not have the answers to this situation I am just hoping there are those out there that do and that they care enough to take action. Angela

    1. Hi Angela, I really appreciated your comments – it is astounding really, the way in which parents are told and managed.

      I feel that the immediate response of some in the medical profession in the immediate aftermath of realising that your newborn has DS is that the baby has ‘slipped through the net’ because of the great emphasis on pre-natal screening. By the time the child is born, all parents have ever heard about babies with DS is the nightmare worst-case scenario,

      The ‘Welcome to Holland’ needs to be read by the medical team – not us, perhaps.

      There is also a great emphasis on the medical stuff – but we don’t sit the parents of ‘normal’ babies down and say ‘do you realise that your child will probably die of cancer, is at risk of diabetes and may also have a heart attack’ (one of which will probably catch up with most of us eventually).

      We need to be able to live our lives and take whatever comes when it comes to our children – I am not advocating some sort of mass ‘denial’ it is about a shift in attitude I think. We probably could do with much more advice on alternative learning strategies; issues of sensory processing and how to cope with the endless stares and embarrassment of ‘others’. All skills I’ve had to teach myself.

      1. Hello Sarah, thank you for your reply. I just wanted to say that I agree with you that is seemed to me that the very first reaction of the medical community was almost a fear that I would somehow blame them for my son being born with DS. Since I waited until I was 38 to become pregnant we had been made aware, from several different people including the medical community, that DS was a greater possibility for us. If the medical community would have bothered to ask we would have said it would not matter to us if the child did or did not screen positive for DS. The real difference would have been the arrangements for his birth (I live in a community that does not have a level 1 NICU), an ability to start the research process about what might be needed earlier and finally above all else be able to tell family. I had all the non-invasive screenings except the nucal fold test as they miss scheduled it and thus we missed the window of time it has to be in. All the tests said we had nothing to worry about.

        Wait I must address that…the medical community said it exactly that way.

        “The screening came back with x% which is better even than we expected for your age group so you have nothing to worry about.”

        To me when the medical community starts at it form the place where it is “something to worry about” or not…well it just makes it a WHOLE LOT more scary than it needs to be. Especially if you have no information to go on about what it really is anyway.

        I really agree that we need to: (I’ll quote you here because I feel you say it very well and I am not good at picking my words about this subject.)

        ” We need to be able to live our lives and take whatever comes when it comes to our children – I am not advocating some sort of mass ‘denial’ it is about a shift in attitude I think.”

        The information I feel I needed most was:
        1) How to tell close family and friends…or even if that was really necessary.
        (I am not advocating denial here! I have come to the conclusion that I do not tell people my son has DS unless they ask or otherwise bring it up. My reasoning for this is that DS is not what defines my son. DS is an anomaly in a petri dish that has side effects that my son has to deal with as they arise. I, myself, have dyslexia and do not feel the need to point it out to everyone I know the minute that I meet them, so why should I do that to him.)
        2) That DS has a WIDELY varying presentation in each individual.
        3) How to find good medical personel that would know about current medical issues in my area.
        4) How to get in touch with the correct people to get started with early interventions. ( Preferably with out all the run around and false starts that I still find myself trying to navigate through.)
        5) How to get in touch with other families that have a positive attitude, experience with all of the above, and possibly just a few moments to help out someone new to everything.

        As my son is still young and I do live out and away from things I have not yet had to deal with the “…how to cope with the endless stares and embarrassment of ‘others’.” but I do believe I will need some help figuring that one out. I am not sure how I will react to that as I find that I am more protective of both of my children (I have a younger daughter as well) than I would have ever expected myself to be.

        I realize that I have written way more than I excepted to and i will rap it up. I thank you for you initial post and your response. They hit home with me. I haven’t really posted much about my feelings on this so I guess you got the flood here.

  9. Wow Sarah – a friend of mine posted the link to your blog and I wanted to thank you. I know it took guts to come out and say what you have said (eloquently, to boot) and I have to take a moment to let you know nothing more than that I agree. I have always felt the same way – and I repeatedly tell people that the single hardest thing about raising my son (who has DS) is not him…it is everyone else. Society has always been and will always continue to be our biggest enemy – but together we will be our greatest strength for our children. Keep watch for a new organization called “Family First” – it will be truly exciting for our community and the first to band all disabilities together into one unified voice.

    1. Wow, Jennifer, Family First sounds really interesting. We definitely need a strategy for educating the great body of people out there who, with some better understanding, I am sure could get over seeing a disabled child as some sort of terrible tragedy and start to see these children – and adults – as just regular members of society. That’s what I want because it can get really tiring trying to teach this on top of managing my son.
      I really appreciate you commenting – and do please let me know of any developments. Thanks 🙂

      1. Sarah, I will be sure to keep you updated on Family First. It is the brainchild of Hannah and Lon Jacobs – staunch defenders of disability rights. We are fortunate enough to be apart of a very large community since our son has DS – I have received so much information, commodity, advice, etc. from this family over the years. But there are so many smaller groups – some with no “organization” at all. Family First hopes to bind us all together. Can you imagine what a voice we would have? If you count all people with disabilities and add in family members and friends who know and love them – we would be the largest minority group in the world.

        In response to the woman who disagrees (a bit) with your thoughts on the Holland analogy, I agree that the general context for mom’s receiving the diagnosis is still correct – it is not a bad world we live in (quite the contrary) – not as scary as they may or may not have been lead to believe…but perhaps Emily should think of updating the essay now. Our biggest problem in the DS world is how this outdated information is still being spewed by medical “professionals”. If they must make a choice – make an INFORMED choice. On that note, perhaps Emily should reconsider her choice of title as well – considering Holland has been working feverishly to increase prenatal testing (to help what we all know to be genocide). To me, Holland these days is about as friendly to our DS community as Nazi death camps were to the Jewish population. I would not be at all happy to step off that plane.

  10. Loved this piece! My son is 14 going on 25 (ha!)….he is the light of our family and so true to what you say…one is 100% that he loves us with no strings attached…and is happy with whatever comes his way, well…except when he wants to stay up past his bedtime playing his Xbox…:)
    I’ve always kinda felt the same about both the movie (which I did enjoy mainly because of Tayne Dally), and the Holland poem. I know that DS has sometimes been a mind boggling, earth shattering experience for some, but it wasn’t for me (frustrating at times yes)…probly helped that I was 46 and not 20 and he is my youngest. Not saying it has been easy, espec. in the academics, being a primary teacher and having taught many kids how to read, write and do arithmtic, this child has stretched me beyond what I could imagine…but it’s all good and I see many things that are so much more important thatn the 3 r’s…his maturity in knowing what to say and when to say it (this amazes me!), his sudden acts of kindness and sweetness (here’s a dandelion Mum from the cow pasture…), his play on words and funny puns…
    Thanks again for your insight/encouragement here, I’m glad I found your blog on Facebook, otherwise I would have missed it.
    My mother is Welsh from Pembrokshire as well…I live in Alaska.
    Bless you in all your endeavors, your son is very handsome, congratulations!
    Griselda (Gri) Buongiorne
    Dry Creek, Alaska

    1. Hi Gri! and lovely to hear from you – you are a long way from Pembrokeshire!

      I’m a physiotherapist and had my first encounter with teenagers with DS (incarcerated in a large institution in my home town) when I was training.

      I thought the world must be mad, locking these guys up. Many years later I became a member of the official ‘escape committee’ when I worked in the community resettling long-term residents of that same institution back into the original communities they had been removed from a lifetime ago.

      What struck me was that many who didn’t in fact have a diagnosed medical condition or perhaps a mild learning disability, struggled with so many basics of life because they had been denied the opportunity to learn as they went along because of the limited life experiences they’d had due to their incarceration. It really is a crime.

      When my son came along, unexpectedly, I felt absolutely fine about the new challenges we would face together, but I do find advocating (endlessly….) hard work! I am interested in sensory processing and how that is impacting in terms of my son’s ‘behaviour’ and like you I have been amazed by his emotional intelligence, and also his knowledge. It is a challenge undoubtedly, but being a parent is anyway!

      Re maturity, I still have people asking ‘what’s your son’s mental age then?’ and I just about manage to hold onto myself for long enough to explain that the concept doesn’t really work.

      Your son sounds great 🙂 Geraint is a handsome lad and boy does he know it 😉

      Thanks for your comments – it really helps to know I am not alone.
      Sarah

  11. Hi friend
    I’m from India father of God gifted Akash Trisome-21.When my eyes are moving on your lines I felt that you are telling about my son to that society till today separating Down syndromes from main stream.In major part of Indian society Down syndromes are treated as MADS,abusing,laughing at them,joking at them.
    Now the time has come to change this poor culture.The society must accept them give them respect and opportunity to live their life indepndently with self esteem.
    With regards
    Father of God gifted Akash

  12. I know this won’t be popular, but I disagree! I still think the Holland analagy has relevance and good advice doesn’t get outdated. I don’t think the Emily was ever saying that parenthood is a vacation, just that raising a child with a disability is different, not terrible. I believe she wrote the essay, not as a guide for new parents, but to explain to people without children with disabilities what it is like to be in our shoes. I think she is right! It is different, and there is a grieving that doesn’t ever go away. But it isn’t terrible!!!

    While there is still lots of room for improvement, my son has far more opportunities than he would have had if he had been born in the 80s when doctors were still recommending institutionalization. I’m a single parent on a very limited income and my son actually has more opportunities than his typical peers because of his disability. Few of his peers have the opportunity to attend Tennis Camp or go indoor rock climbing or star in movies as my son just did.

    Maybe the problem with the analogy is simply that we’re using it on the wrong audience. I agree that we should all take a vacation…I’m thinking more about Australia!

    1. hi Carol, thanks for your comments – you make a very good point about the context of Emily’s original comment – and yes, it can be helpful in trying to explain to the parents of non-disabled children what it is ‘like’.

      My gripe really is that I wish society had educated itself and realised it – all these years later – and yet we are still trying to explain ourselves.

      Apparently parents of newborn children with a diagnosis of DS are still being handed Emily’s essay as some sort of counselling.

      It didn’t happen to me, in the UK, but many mums in the USA have mentioned this and the essay is on the front page of a prominent website about DS.

      It was also on Twitter the other day, which is what sparked me to write my piece in the first place. I thought ‘oh here we go again!’ because we need to be taking the debate on from this 1970s scenario, don’t we?

      I really enjoyed hearing about your son’s opportunities – I’d love to hear more about the movie work – sounds very exciting!

      1. Hi Sarah,
        I guess I’ve for the most part just been fortunate that so far (Jon is only 7) I haven’t faced a lot of negative reaction. I think I also resonate with this essay since, unlike most parents, I choose Holland. While I believe God asked me to make this choice, it was ultimately my choice. On the morning I met my son (he was 4 months old and living in a group home), God spoke to me through the Holland story which I had heard years earlier. I believe He said, “I have called you to Holland. Most people don’t have a choice. You will face lots of opposition on this journey, from some who say Holland has no value, and from others that say it is wrong to journey alone. Neither of these is true. I have indeed called you to Holland and I will walk with you, just like I have walked with you on all the other journeys we have taken.” I drove to the group home and there was a windmill in the front yard. On the day Jon’s adoption finalized, I recieved one bouquet of flowers from someone who was not familiar with the story…yellow tulips. Obviously I have a bias toward the Holland story. I have an awesome church community that loves and accepts Jon as he is. He is fully included in a typical first grade with an awesome teacher. The kids in the condo complex where I live play with him nicely as do the kids at his school and Sunday school (even when he is inappropriate which is becoming more often).

        As far as Jon’s movie, it was a student film and just premiered in a theater last week. You can find the trailer at http://www.littleredelephantfilm.com . It is a short (15-20 minute) student film by one of the local universities (Biola) and will only be seen at film festivals. The story is about a journalist who is assigned a story at the special school where she meets Zach (Jon) and their relationship changes the course of her life. Jon loves acting and is part of Born to Act Players, Jr. taught by Mary Rings. I’m not sure if acting class or church is the favorite part of Jon’s week, but they are definately the highlights. Jon gets so much out of acting class that I would keep it even if it meant losing all his other therapies. How many 6 year olds quote Shakespeare (I heard him talking with his little people “sans teeth, sans eyes, sans taste, sans everything” from As You Like It.)

        I haven’t faced much need to explain Jon, and I don’t really think society ever educates itself. I think Emily’s generation of parents made huge inroads. It isn’t the norm now for doctors to recommend institutionalization (although sadly it still happens). In America the IDEA law gave our children the right to an education which was at first segregated, and now our generation is pushing for inclusion. With inclusion comes education…because people in society are exposed to people with differing abilities from a young age. When I was young, it was rare to see a person with Down syndrome. They were kept apart from society, so society didn’t have the opportuntiy to be educated. I believe that it is other children learning from our special children that will eventually educate society. At Jon’s IEPs last year and this year his teachers both stated that they learned more from Jon than they taught him and all the students in their class learned as well. This year’s teacher cried as she reported that the child in her room that was the biggest inborn bully has become Jon’s biggest advocate and has learned compassion this year from being in the class with Jon. Is it too slow, yes, but it is still progress.

        As an off topic note, I now find myself walking directly into opposition as I believe that God has now told me to speak out against “Prenatal Discrimination”. I’m still sorting out what that will look like, but in the mean time He gave me the design of a bracelet which I believe will be sort of in lieu of a book table when I do speaking events. Check them out at my website, http://www.bygodsdesign.net if you have a chance.

  13. As a parent of a 2 year old with Down Syndrome I never liked the poem very much. I understand what she says but I mourned my child that I lost and now celebrate the child that I have. She seems to focus on never getting over it, not true I know so many parents that have gotten over it. Do we wonder sometimes yes of course, but we love our son with all our heart and there is not anything we would not do for him. Now for the Italy vs Holland bit, trust me when I say it is a bad comparison because as nice as Italy sounds it is the biggest rip off in the world for tourists, the canals in Venice reek badly (they did when I was there anyway) and they are rude and overprice everything if they are aware that you are a tourist. Now the people from Holland, next door to where I grew up in Belgium are very nice and helpful, forthcoming and honest. So where would you rather be, I think the nice people in Holland get a bad rap here and I personally don’t care for it. So why go to Italy then it is so much nicer here in Holland (if you want to follow her analogy). Just my 2C.
    Els

    1. Thanks for this Els, I agree with you that people are resilient and they do ‘get over’ it – but it seems everyone else doesn’t really want them to because they can’t! I feel that parents have to come to terms with all sorts of ‘get over it’ moments and that as a society we need to focus less on the pursuit of perfection and more on the joyous process of being alive and living it.

      I love your comments about the real Italy and Holland experience! I spent several weeks in Holland funnily enough, when I was just a teenager, and I travelled independently there safely too, having previous visited with my family – and i LOVED it! 🙂

  14. Ladies, talking about the movie “‘Kids Like These” in which the most excellent Tyne Dally plays the role of Emily Kingsley, I have waned to find that movie on DVD for years…watched a very bad version on a pirated VHS a long time ago. If anybody knows if it even exists on DVD…I would love to hear from you! I enjoyed the movie, albeit – mainly because I am a fan of TD…ha! but the actor who played Jason was very cool…

    1. Upon seeing you post I thought of Netflicks and went to take a look. It says that they do have it and it is on DVD. It is also available for rent from Blockbuster apparently. If they have it on DVD then you should be able to find it out there for sale somewhere, you would think, but I can’t seem to find a seller online at this point. Sorry…Hope this helps.

    2. Hi Gri, it looks like Angela did some research – I love it! 🙂 I saw the film by chance on tv here in the UK years ago and enjoyed it, there have been some excellent acting roles requiring the talents of an actor with DS but it is making me think now….we need Emily to write a new one…What Jason Did Next that focuses perhaps on his perspective and gives people a fresh take on life. That would be a step forward in Getting Over It maybe?

  15. Great article and discussion. Personally, I never did respond to the Holland poem or the feeling of devastation that so much of the literature and personal accounts address. It’s so nice to read something and be able to relate to the sentiments. I wanted to be a parent and I have a beautiful, smart, funny three year old boy who just happens to have Ds. I don’t have a “typical” parenting experience to compare it to, he is my only child, and I wouldn’t trade this for anything. I feel like I’m still finding my voice as an advocate, but think that part of our advocacy is in going about our lives, participating in our communities and showing people by our example that our experience and our children(s) are as valuable as any other.

    Thanks to +15 for sharing your post.

    1. Hi Lori, you expressed there feeling I had when my boy was a cute toddler.

      Some were so hung up on the fact that this was a child with DS that it seemed to me they were focused on that rather than on him and how gorgeous and smart he was.
      I’ve been called ‘The physio with the Down’s Kid’ yeh and….?

      For many years I found it annoying when Geraint was referred to as ‘the Down’s kid’ not because I found the term offensive but because he wasn’t Down’s Baby he was my baby!

      It is simply exhausting helping other people see beyond this because (arguably) of the narrow and often poor media representation and very limited perspectives we have about people successfully living their lives with an extra 21.

      What I am finding, as my son graduates into adulthood, is that society isn’t ready enough for him yet, his moments of challenging behaviour is starting to limit his choices and stress me out.

      I am wired up to provide lots of exciting outdoor life experiences and it is becoming quite a challenge. While getting wrapped up dealing with people and their sometimes terribly outdated attitudes, I am looking for answers to his sensory processing needs so that I can help Geraint get the sort of experiences he needs to feel relaxed. There seems to be a gap here and that’s frustrating.

  16. boy, would I like to go out for coffee with you ladies. I am so grateful for the internet and this blog right now!!! John is 7 and I am agreeing with every point you make, Sarah. Thank you

    1. Hi Christine, thank you, I can’t tell you how much it means meeting you all here. I live in a pretty remote place and it can be daunting with a child who keeps me on my toes. Lovely to know I am not alone. kettle on then LOL!

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