Momma Monday: 31 for 21: Day 19 The best thing about Down syndrome…

The Best

The Best

…is the community surrounding and holding it up. I often found myself shying away from other mommies stories about their “amazing” kids when Zuzu was a newborn. Don’t get me wrong, I am over-the-moon proud of each and every one of my girl’s accomplishments. But there frequently seemed to be a “show and tell” or “lookee me” quality to the way other mothers would talk about their children. They so seem to think that their child’s accomplishments are a clear reflection on their parently prowess. At least that is how it came across to me. Everyone should be proud, but it often has felt like another parents level of interest in if Zuzu is talking or walking, or sleeping or pooping was in direct proportion to their need for an opener to tell me about their little darlings steps, words, Zzzzz or poo-poos. It often has felt like their inquiries into my child’s well being were really just a springboard for their own bragfest.

With The Quail, peoples’ inquiries don’t hold that feel. They seem more earnest, thrilled and curious. The optimism I’ve observed and felt about parenting since this dear Quail has come into my world is awesome. I would have expected it to be the other way around if I had to guess or anticipate what it would be like to talk about my daughter that has Ds’s accomplishments. It is such a pleasant surprise. If she didn’t have this diagnosis these people wouldn’t be in my life and I might have just gone on feeling shy and like it was arrogant to brag so freely.

Although on second thought, maybe the community’s spirit and optimism is the second best thing about Down syndrome; since I’m pretty sure The Quail herself is the best thing.

31 for 21, day 18 “Special Needs”

IMG_9505I’ve always felt like people write someone’s inability to instinctually know how to do something off to mental retardation a little too quickly. In an earlier incarnation of my life I worked with adults with developmental disabilities that had lived the majority of their life in institutional settings and were transitioning into the community. From the time they were wee babes until The State; mind you the same modern day version of the experts who recommended institutionalization to families many moons ago; now felt they might be best; and in a cheaper fashion served in a community setting. Here’s the thing; by having put people who were in the prime developmental periods of their lives into cribs in institutions where it was impossible to receive one-on-one, or even small group setting attention they could have received at home- or at least the attention of a smaller ratio of grown-ups to babies then in the institution if there were other children in the household, it is impossible to base their potential for learning on history’s research. There is no history research that can show the brain’s cognitive ability available that I know of.

It was extremely unusual in the 1950’s, 1960’s and 1970’s  and earlier for someone with a diagnosis of moderate, severe or profound mental retardation to be living in their own home. It did happen but it was the exception. The function that folks who were institutionalized exhibit when moved into the community is not the same level of function that they could be capable of if they had been exposed to the same sights, sounds, experiences as other children growing up in their home. So when the cynics out there suggest that living with a person that has a diagnosis is a major burden to the family and society and ought to be terminated in utero when the diagnosis of Down syndrome can be made;  there is no way that their opinion; which they call fact based on history and research; can apply to modern day life.

There has been a huge leap in the abilities and development of children with a diagnosis of Down syndrome even in the last 10 years since the push to treat them as you would treat other children without the diagnosis. The culprit- Early Intervention. Strategic assessment and focus on areas that appear to be showing a delay in development. Those same cynics would argue that the mere usage of Early Intervention is a burden. One recent cynic has argued that it is only the middle class suburban moms that don’t see it this way. That the majority of families do see it as a burden because they don’t have access to therapies and support that a middle class family does. But of course- one could make a much more generalized argument based on that point of view that merely having children at all is a burden when you don’t fall into the category of “middle-class”. Although strangely this cynic seems to be focusing her attention solely on the diagnosis of Down syndrome and doesn not generalize her view to the population at large. I’m not going to link to her and her recent article here because she has been republishing her ignorant view and appears to be making money off of her exploitation of this view. And there is no need to pad her pockets for her eugenics stance. She’s already touting herself as an expert practicing OB which appears to not be the case. She is a blogging former OB no longer in practice targeting families that are facing pre-natal diagnosis and are already scared and seeking help in deciding whether or not to terminate a pregnancy based on what would be best for their future family member. I feel so sorry for the families that have turned to her for supposed support and expertise.

But I digress in my irritation with this person. As I mentioned I used to work with adults that were recently de-institutionalized. They were people who had previously been seen as incapable and in need of continuous support. When they first moved out and into their community it was easy to see why that was the view. They didn’t participate in any of the typical household activities that non-institutionalized folks did. But that is because they had never been taught how. Over the months with targeted guidance, these individuals began to learn and do the same household tasks that any other adult taking care of their home would. I remember specifically going over to visit a man with a diagnosis of severe mental retardation and very little speech that had moved into an apartment with a helper and one other person with a disability. When I showed up his helper was in the process of helping him to unload his own dishwasher for one of the first times and in the process showing him the name and sign for each of the items. In the middle of this the man signed “bathroom” to his helper who then told him to go ahead and come back when he was done. I know it seems like a silly simple example. But this man had never had the opportunity for such a normal interaction.  He was not given the opportunity to learn language during those critical early years when we all develop language and speech at an astounding rate. He was put in an institution and “taken care of”.

I also have a sister with a diagnosis of profound mental retardation that at a very young age; my family was told she would be best off in an institution. No one was offering services or therapies to help with her development. When I was in graduate school she was reassessed and de-institutionalization was recommended for her as well. Now, many years later she lives in her home with a few roommates and helpers. She gets up and feeds herself at the table with her roommates, she gets out and shops and visits in her community. She laughs and smiles when the sun and wind hits her face. She bounces along to the radio when she is riding in the car and shows a distinct preference for 50’s and 60’s rock-n-roll music; much like my husband. She grins ear to ear when my parents hug her and tears well up in her eyes when she hears their voice over the phone from a long way away on a holiday that they can’t be with her. Thank goodness for the dear staff taking the time to find this out and get to know her.

As a family member of a woman who it was recommended that be institutionalized; I heed the modern day “experts” to not judge the families that went through this most wretched and heartbreaking decision. When an expert tells you this is the best thing for your child; of course you will do it- we all want what is best for our children; and when society views them as vulnerable you especially feel the need to protect them. Fortunately the world is coming around and taking the time to get to know people who were previously viewed as practically non-human. Humanity is finally starting to see the humanness in all people. Over the next few generations the abilities of all will grow by leaps and bounds. New research is being done and people of all abilities are having opportunities to learn previously unheard of.

Some may still argue that is all well and good but it is still a “burden” to have to specialize teaching to the particular way a person learns. I would argue we do that already for all types of people. When a person is tagged as gifted and talented they don’t remain in a standard classroom. The parents wouldn’t hear of it. They want special, individualized opportunities for growth for their children. When a person shows at a young age a particular inclination for a given talent- be it sports or music, their parents and teachers take note and offer individualized training to encourage and aid the learning situation. Your tax dollars go to support these “gifted” folks as surely as they go to support those deemed in need of “special education”.  As an adult I am terrible at reading in instruction manual on how to work a piece of equipment. But if someone can just take the time to show me how they do it; I’ll catch on in no time. On the other hand my husband is best left to interpret the owners manual where he can read it at his own pace rather than having another person show him what to do.  I have a masters degree and he has a PhD. The fact that we have different learning styles does not mean we were incapable of learning. It means someone took the time to figure out how we best learned and supported that. There is tons of research out there explaining multiple intelligences and different learning styles. There is no shame seen in applying this to individuals with average to above average IQ’s. But for some reason some sectors of society have not embraced the appropriateness of this for individuals who are deemed of low intelligence by traditional testing methods.  It seems to me this is where it would be most appropriate and useful.

The other aspect of my career that validates this opinion is my work as a disability examiner for Social Security. I read psychological exams and compare the IQ findings to a persons functional aptitude. More often than not- adult women who show the same lower IQ range then men in the same category retain a higher functional capacity. My self-assessed explanation for this is quite simple really. Our society has traditionally viewed “keeping house” as women’s work. So when a woman with a low IQ was not given the opportunity for a school-based educational experience, if she was not moved into an institution; she was kept at her mother’s knee and taught to cook and clean. The men in the same type of circumstances were traditionally not expected to keep house or cook. Their abilities in function as adults typically reflect this.  This also shows the wide variation of functional capacity in people with supposedly similar intellectual quotients.

As a new mother of a person who will frequently be stereotyped by societies experiences and views; I feel extremely fortunate to have had the background I did so that I can be a little more open to the learning style other’s around me. I feel extremely fortunate that my lovely daughter was born in today’s world when we are a little less arrogant about negating her future potential. While the world may not be entirely open to her yet; I have confidence that through our love and support and by the sheer virtue of other’s good fortune to meet and know her ; the world will continue to evolve and become a slightly kinder and less judgmental place. At least that is my hope for her and others. Not other’s “like her”, just others. Because rest assured; if someone is taking the time to judge her; most likely someone else is taking the time to judge you. Increasing our capacity to understand and know people of all abilities does affect everyone. You may not see that today, or even tomorrow; but someday you will hopefully understand.

Quail Day- The heart of the matter; 31 for 21 Day 15

Vellamo

Vellamo

So we have been back to our pediatric cardiologist for a follow up. Not such a great visit- no impending open heart surgery but he talked a lot more about it and how great the heart team we would use is. Which of course left me gloomy and worried. I’m wondering about giving up trying to nurse- he said that there was no need but he also said her weight dropped off a bit- and I know the main change in the last few weeks is trying to get her to nurse and it tires her out and she ends up eating less. Although- when I plotted her weight and height it didn’t look to me like it had dropped at all. I work with a pediatrician and I showed her my handy charting work and she thought it looked accurate as well- that being the case her weight has not dropped.

I need to stew over yesterday’s visit some more I don’t want to get all alarmist about it- he said essentially things are the same- but he was just more guarded about her future and described the septum wall hole as bigger then he has in the past and said he was surprised she hasn’t needed surgery already. So I was a bit taken aback. I guess we have probably always been in limboland over this- but since she doesn’t have active symptoms we can easily see; I don’t often think of it and am more focused on how great she is doing. This is just the most time he has spent talking about surgery. Before he always said we were a long way off from worrying about it and my overactive mind heard  the start of him mentally preparing us for surgery. I hope it is just my overactive imagination but I tend to be right about these things which doesn’t help my paranoia.

I just hate, hate, hate the thought that something I might be doing is contributing to a compromise in her health. He said nursing was fine and he would tell me if it wasn’t but he also said there was a drop in weight gain- which is what could lead to surgery. Maybe he knows it is inevitable and thats why he said what he said. He was very kind about it- he outright said that trying to teach a baby to nurse that doesn’t want to is stressful enough and I shouldn’t add to that by thinking guilty thoughts that it is harming her- but I can’t help myself. The nursing is to strengthen her oral-motor muscles- so she will not have as hard a time with solid foods and will have better speech clarity. Both of which are areas that are typical to be delayed in kiddos with Ds. Of course heart surgery is a typical outcome for a child with Ds as well- it’s all just so gray- there isn’t any clear right or wrong right now- which is my fear that in hindsight I’m going to be left wondering if I should have made the other choice. If she has heart surgery I’ll feel guilty that I should have let her have an easier time of drinking her milk from the bottle. If she doesn’t have heart surgery then I’ll wish I had been more tenacious with teaching her to nurse. I can’t know the future now so it just leaves me in bits and pieces over what to do for her. I think we are usually blessed to not have to face the enormity of the consequences of our actions on our children’s futures on a daily basis. It’s just so hard when we do have to face it; well maybe not head on, but from a spot in the mist where the road ahead is less clear.

31 for 21, Day 11: It’ll be ok.

IMG_9618IMG_9621IMG_9636IMG_9640 Statistically speaking; 90% of all people who receive a prenatal diagnosis of  Down syndrome choose to terminate their pregnancy. While I consider myself pro-choice. I firmly believe that Down syndrome is not a reason for abortion. Some of the worst articles and writings out there talk about how the only people in this day and age that would give birth to a child with Down syndrome are religious masochist. I can promise you I am not.

The reasoning behind this seems to be that a child with Down syndrome will only suffer in life. Bear in mind this view can only be based on the historical context and precedent of placing children with Down syndrome in institutions away from their families, communities and appropriate medical care. This is not what life looks like now. Right now the biggest hurdle a person and family touched by Ds will face in life is overcoming the ignorance and hatred of strangers. I wouldn’t even call this a challenge- a challenge is something every single human being on this planet works with to learn to do any single task. It is a challenge for any new baby to learn to sit, to roll, to walk and  to talk. As parents and teachers we get to know our children and their learning style and we apply that knowledge to help each and every one of our children be as successful as they possibly can be. We champion our children. And I can promise you your child with Down syndrome will be no different in that regard.

Yes there will be doctor appointments and therapies. That is most likely a given. But it is a given opportunity. We are so fortunate that in this day and age that technology and advances in science and medicine can help us all live better lives. There are people who will help you figure out what to do to help your child succeed. How can that possibly be a bad thing?

When our oldest daughter Zuzu was in her first year we had doctor appointment after doctor appointment. We spend the second six months of her life with every other week visits to the pediatrician to follow up on her ear infections and the subsequent follies that follow a dose of antibiotics in a young system. It was a hard year for all of us. But the fact that we were frequent visitors to her caring doctor certainly never gave me pause as to her worth as a human being. Our Zuzu is a spirited child. We are constantly trying to figure out what is the kindest way to explain the world and societies expectations that she not yell and throw her food during a meal out at a restaurant. The best way for her to learn this? By going out to eat and practicing it. The fact that we have to explain things to our 3 year old has never given me pause as to her worth as a human being.

Will the way we have to explain things and teach our Quail be different then how we explain things and teach things to our Zuzu? Yes- most likely. Is it because she has Down syndrome? I don’t know. Maybe, maybe not. Maybe it is because she is a unique human being, with needs that are different then her sisters. Are my needs different then my own sisters? Absolutely. Does that make me less of a human being? Absolutely not.

I read medical records for a living. I read those of children and adults alike. I see that a large population of our world faces challenges in their health and well being. How often is that because these people have Down syndrome? Not very. People all around us have heart, back, psychological, IQ, behavioral, breathing and digestive issues. The majority of the time they do not have Down syndrome. Yet no one questions the value of these individual’s worth in society.

Nowadays a typical person that has Down syndrome is likely to be affected by a group of specific medical issues. But they are just that- medical issues. They can be medically managed.

Thyroid disorder? Control it with diet, exercise and thyroid medication. Does the general population also face this issue? Absolutely.

Vision difficulties? Control it with glasses, vision therapy or laser surgery. Does the general population also face this issue? Absolutely.

Hearing difficulties? Control it with hearing aides, regular check ups and treatment of fluid in the ears and ear infections. Does the general population also face this issue? Absolutely.

Learning difficulties? Control it with a good diet, exposure to a stimulating environment, frequent opportunities for learning and early intervention which is a county enacted; government sponsored program.  Does the general population also face this issue? Absolutely. Let me just say that you would be surprised to find out the actual IQ of most people you interact with on a daily basis.

Heart issues? Regular check ups, medication and treatment from a pediatric cardiologist. Does the general population face this issue? Absolutely.

It is impossible to know prenatally what the future of any child will be. We hope that our children will not struggle in life. We hope that they will be healthy, happy and successful in life. What is the definition of a successful life? Well that varies by person. Some people find meaning in making millions of dollars. Some people find meaning in being famous. Some people find meaning in helping others. Will your child find meaning in one of these? There is no way to know prenatally.

Will your child face challenges in life? Yes, we all do. Are there people out there to help you figure out how to best support your child with or without Down syndrome? Yes, we all will.

Will your child suffer because they may need therapy to achieve their developmental milestones? Well take a look at the pictures above. This is the Quail doing her physical therapy at home. If this looks like suffering to someone- well then I’m sorry for them and the life they lead.

Will your child with Down syndrome achieve their developmental milestones? Yes. Yes they will. Will it be later than the average child? Maybe. Is there a way to know that prenatally? No. No there is not. The books you read give you an average of when a child will achieve a particular milestone. That means some will do it earlier and some will do it later. Will your child with Down syndrome find happiness in their life? Maybe. Will your child without Down syndrome find happiness in their life? Maybe. We certainly hope so for all of our children. Will your child with Down syndrome never live on their own? I don’t know- maybe, maybe not. The world of opportunities open to a person with a disability is changing every day. Will your child without Down syndrome ever live on their own? I don’t know- maybe, maybe not. It is impossible to know this prenatally as well.

If you are bothered that the government may help provide services to ensure the future of your child. Well let me say there are plenty of services that the government provides that  I would prefer they ask me my opinion on how that money is spent as well. Do I think that the government spending money on the future of all children is important? Yes, yes I do and that is one of the main reasons I pay my taxes. Are there people out there that don’t have Down syndrome and still relay on government funding? Well if you drive on public roads, if you use the government courts, if you park on a public street, if you use electricity, if you take a FDA approved medication, if you go or went to public school, if you enjoy a publicly regulated sewage system, if you enjoy the freedom to speak your mind and live your life. Then yes- the government is spending money on you as well.

Will my child that has Down syndrome need government assistance when she grows up in order to live? I don’t know. Am I doing all I can to make her a strong, capable independent person? Yes, yes I am. Is my child that doesn’t have Down syndrome going to be in need of government assistance when she grows up in order to live? I don’t know. Am I doing all I can to make her a strong, capable independent person? Yes, yes I am. Am I going to be in need of government assistance someday myself- either due to retirement or a future injury? I certainly hope not. But its impossible to know. Am I doing all I can to make myself a strong, capable independent person throughout my life? Yes. Yes, I am.

Will your child with Down syndrome know you? Yes. Absolutely yes.

Will your child with Down syndrome learn and grow? Yes. Absolutely yes.

Will there be joy in your life with a child with Down syndrome. Yes. Absolutely yes.

Now if you’ll excuse me- I need to go help my 3 year old who does not have Down syndrome poop in the potty. She is in the process of being potty-trained. In the meantime- my 7.5 month old, who does happen to have Down syndrome is busy feeding herself her morning bottle.