Challenged - une femme d'un certain âge

Challenged

“By Invitation Only” is an international group of bloggers who share on a monthly basis their unique perspectives on a topic. This month’s By Invitation Only theme is “our greatest challenge” and how it’s changed us. 

“Challenged.” It’s a way of describing those who may live with physical and/or mental disabilities. It’s become a term that we often use jokingly. “I’m Fashion Challenged.”  “I’m Checkbook-Balancing Challenged.” I’ve used it jokingly myself.

I’d always assumed that raising a child would be my biggest challenge, but had no idea I’d be raising a “challenged” child. Due to an undetected problem late in my pregnancy, our son was severely deprived of oxygen in utero, resulting in what is medically referred to as Traumatic Brain Injury. In his case, it means that he has mild cerebral palsy, some moderate hearing loss, impaired fine motor skills, seizure disorder (thankfully well controlled with medication) and at the age of 15 still functions emotionally, intellectually and cognitively at about a 3-year-old level. His challenges (and ours) have changed over time. Early on, it was about fighting with our insurance company to cover the intensive physical therapy he needed to develop the gross motor skills that allowed him to sit up and eventually walk. Potty training took over a decade. Now, we’re dealing with teenager behavioral stuff: willfulness, aggression, learning to control impulses. There are weeks when my arms are covered with bruises from where he’s grabbed and pinched me during a sudden fit of anger.

But he’s a sweet kid. He gets as much enjoyment from a ride on the kiddie train at the mall as he does from a day at Disneyland. He wants to learn, and is often asking us “what’s it say” when he sees a sign or printed words on a screen. He takes pride in his accomplishments like brushing his teeth or completing a simple puzzle or dressing himself or counting to thirty. As I type this, he’s contentedly watching Sesame Street.

I’m not proud to admit this, but I used to be uncomfortable around people with obvious mental disabilities. When I was growing up, people who were mentally retarded or otherwise challenged were hidden away. What we don’t know, we tend to fear. Now there’s much more effort to integrate them into the community beginning with public schools, and programs like Special Olympics give us an opportunity to interact positively with those who are cognitively challenged. Raising a child with severe mental retardation has taught me to see the person rather than just the disability. It’s taught me that experiences and quality of life rather than accomplishments are what matter. It’s taught me that sometimes we can do everything “right” but that life can throw any of us a curve ball. It’s taught me that will and determination can sometimes overcome limitations. It’s taught me that I have reserves of patience and toughness light years beyond what I’d ever imagined. It’s taught me to let go of expectations and guilt, and just do the best I can under the circumstances.

(I want to apologize if I’ve used any words or terms that offend, but these are all words that have been used by professionals who work with our son.)

Go see what the rest of the By Invitation Only bloggers have to say about their biggest challenges here, at Splenderosa.
~

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51 Comments

  1. April 2, 2013 / 3:34 pm

    Great post. I appreciate the honesty and the perspective.

  2. April 2, 2013 / 3:58 pm

    That was the most beautiful thing I’ve ever read. Thank you for posting it.

  3. April 2, 2013 / 4:02 pm

    You have my utmost respect. I work with special needs children so I understand some of the challenges. It must take great strength and dedication to parent effectively and being an advocate for him must be daunting at times.
    You have risen to the challenge and do so with such grace and dignity.
    I think you have done a remarkable job.

  4. April 2, 2013 / 4:41 pm

    Thanks for writing this post. I am struggling now to help my 18-year-old son transition to adulthood, and it is a bumpy ride. With no real diagnosis, we’re having a very difficult time getting services, but he is basically like age 6 socially. I send you patience and peace.

  5. April 2, 2013 / 5:09 pm

    How very well you write, and how nice it is to read such a thoughtful, heartful, intelligent post. Thanks.

  6. April 2, 2013 / 5:28 pm

    I’m in awe of your ability to regularly delight us with your style and fashion musings here as you cope with the challenges your son presents. It sounds like your love and care for him have allowed him to live his own life as fully as he can.

    Our first son was born with Down Syndrome and a heart defect and died at age 9 months. Via local support groups and service providers, we met other parents at the time whose infants were born with Down Syndrome. Through the years, as I’ve seen the difficulties these friends have faced in raising their children, I’ve felt both guilty, and, sometimes I admit, grateful that we didn’t have to face the same challenges with our second son (I hope no one is horrified that I say that). I’m also happy to have shared their children’s successes and to have known and loved their kids (adults now!).

    Best wishes to you and your family…really appreciate this thoughtful post.

  7. April 2, 2013 / 5:35 pm

    This was a very moving and honest post. You are an amazing woman to juggle raising your son, a job and a blog and you are clearly a very strong woman too.

  8. April 2, 2013 / 5:38 pm

    A beautiful and honest post, one well worth reading. Thank you.

  9. April 2, 2013 / 5:40 pm

    Thank you for this honest, loving post, Susan. It is a challenge I am sure, to raise a child with these special conditions. But I feel the love and care flowing through your writing.

  10. April 2, 2013 / 6:08 pm

    As someone whose younger sister has C.P., I have a tiny inkling of what you deal with on a daily basis. I cried as a read this post, especially the part about life throwing you a curve ball even if you do everything right. I am a longtime reader of your blog, although I seldom comment, and I just want to say I think you are such an intelligent and compassionate person.

  11. April 2, 2013 / 6:11 pm

    Amazing and compassionate post.

  12. April 2, 2013 / 9:10 pm

    I think it’s so important to talk about the things that challenge us – even as they enrich our lives immeasurably. I can’t imagine what it’s like to manage a teenager with impulse-control and aggression to that degree. Parenting is hard, regardless of the kid and the circumstances. To be parenting a child with different needs must be that much more so. I think it’s terrific that you take time to explore things (other than parenting) that you love – fashion, travel, profession etc. And that you share about the may aspects of your exprience. Your life is complex – why shouldn’t we hear about its many different avenues? Thanks for this lovely post.

  13. Pam @ over50feeling40
    April 2, 2013 / 4:01 pm

    Your words caused me to tear up. I have dear friends who live the same life and have learned the same lessons and have the same deep love for their daughter as you do for your son. His sweet, precious child-like side is evident, but you have honestly showed the “challenges” as well. A homebuilder in San Antonio, has built a playland park just for challenged kids…it is called Morgan’s Playland. I just smile when I watch all of them playing there, riding the rides, all at once, laughing. It is a joyous thing. There are smiles in the deep challenges of life…I know you know that.

  14. April 2, 2013 / 11:03 pm

    wonderful post. love your blog…elegance and grace.

    thank you.

  15. eleanorjanebirdy
    April 2, 2013 / 4:15 pm

    Yup, that’s a challenge, alright. I hope you’ve found joy and I’m sure you’ve found wisdom and grace on the road.

  16. vicki archer
    April 2, 2013 / 4:31 pm

    Susan… Your courage, determination and obvious love for your son shine through in this wonderful tribute… How lucky is he to have you… I hope you know that… and you, him… That I am sure you already know… xv

  17. April 2, 2013 / 11:46 pm

    Susan, I admire your dedication and determination in raising your son, surrounding him with love and the resources he needs to develop into the best human being he can be. “… experiences and quality of life rather than accomplishments are what matter.” This is so true. You and your husband are the stars of his life. What a special kind of celebrity.

  18. Kathy
    April 2, 2013 / 5:05 pm

    Susan ~ what a beautiful post, really made me teary. I so admire not only your love and patience with your son, but your obvious determination not to have it completely ruin your life, as so many others have with challenged children. You’re always such a positive force here on the blogosphere, and the joy you show for all of life is so apparent. Thank you.

  19. Sarah
    April 2, 2013 / 5:11 pm

    Susan, this is a wonderful and thought provoking post which both Poppy and I read with admiration. My sister works with special needs teenagers and adults; some who are severely mentally impaired and she says that it is so difficult at times but has huge rewards too. Your son has benefited from your patience, courage, love and determination which shines through in this post and you are so right when you say we must learn “to see the person rather than just the disability”. Thank you. S x

  20. D A Wolf
    April 2, 2013 / 5:13 pm

    What a wonderful post, so filled with love and honesty. Those reserves of patience and toughness that we must discover and maintain – I imagine you could teach us a thing or two.

    Parents (and dare I say, mothers) are made of very strong stuff when it comes to loving and fighting for our children, thankfully. Your example humbles me.

  21. mette
    April 2, 2013 / 5:25 pm

    What a brave, beautiful and honest post!

  22. April 3, 2013 / 12:57 am

    I’m the grandmother of a very young child with special needs, so I always listen closely to what you say about your son. It is already so clear to me that children with special needs are indeed individuals. Thank you for your clear explanation of the challenges both you and your son have faced.

  23. JaneB
    April 2, 2013 / 6:15 pm

    What a lovely post. I don’t know you, and you don’t know me, we’re a world apart, but i have to say i’m so very proud of you.
    As a mother of a challenged child too, i understand.

    Hugs to you and the family.
    Wishing you a wonderful day
    Jane Beckenham in New Zealand.

  24. Frugal Scholar
    April 2, 2013 / 7:27 pm

    The beauty of your spirit comes through in your writing–even when you are writing about shoes. Your family is so lucky.

  25. April 3, 2013 / 3:42 am

    I admire you so much. Your intelligence, your dignity, your lack of pretension. This is only more reason to feel that way. My best to your boy.

  26. April 3, 2013 / 3:46 am

    Thank you everyone, for your very kind and supportive comments.

  27. April 3, 2013 / 4:20 am

    Susan, I’m so late today as I’ve had many appointments, and wanted to read everyone’s posts no matter how late. I’m stopped in my tracks reading this story of your family. A story told with so much love, as well as an understanding far beyond most of us. It is wonderful you decided to share this with us. I am humbled and awed by you. Thank you for taking the time to write this story today and I’m sending a big hug to you…

  28. Paul Goldman
    April 2, 2013 / 10:33 pm

    As a mom of a son with physical disabilities and a special education teacher, I am deeply touched by your post. Thank you for speaking publicly about your family. Showing your strength and determination is a wonderful model for all of us.

  29. Sulky Kitten
    April 2, 2013 / 11:30 pm

    I used to work with young adults with aspergers syndrome and my two nephews are autistic, so I’m aware of some of the challenges you face. But only you can know the real difficulties in your situation. The love you have for your son shines through everything you say about him and I admire your determination to do your best both with and for him. I wish you all the best, you’re a very special lady.

  30. RoseAG
    April 3, 2013 / 12:45 am

    I can imagine this is a challenge in so many aspects! It’s a major thing to come to terms with a child who arrived on earth with a destiny of his/her own.

  31. Glamour Drops
    April 3, 2013 / 1:48 am

    Wow. That’s hard. Sounds like you have just thrown that “curve ball” right back in the air, determined to just get on with it and make the best of it all. For that, and for so much patience, I stand in awe of your attitude and actions.

  32. Merry Wife
    April 3, 2013 / 2:13 am

    You’re always an inspiration, Ms. Pseu.

  33. California Girl
    April 3, 2013 / 4:05 am

    Pseu, if you didn’t write about it, nobody would know. I appreciate this so much. I’ve wanted to ask you more about your son and his disability but felt it would be prying. I don’t think I’ll feel reticent next time.

  34. April 3, 2013 / 1:10 pm

    I love for you to write about your son. It just makes me know even more what a wonderful woman you are. And as a mom myself, I am always interested in other mothers and their children. It’s amazing how what we first perceive as insurmountable, somehow brings us gifts we never imagined Your son is very blessed that you are his mom.

    I used to be kind of uncomfortable around mentally challenged, because I did not know how to interact, and was afraid I would do something wrong. I have gotten past that with life experience. Thanks again for your wonderful blog, and for sharing more about yourself.
    xoxoxoxo

  35. April 3, 2013 / 1:55 pm

    Thank you Pseu, for honestly and eloquently sharing the full continuum of your experience with your son. As an advocate for him, you educate and inform with warmth and intelligence. Your blog is about so much more than style, which of course I love, but when you share your challenges and struggles, I feel privileged and honored to know the complex woman that dresses with elegance and writes with wit and charm.

  36. April 3, 2013 / 2:00 pm

    This is an amazing post. I have a child who has required speech and OT from the time he was 2 and still takes today (he is 10). It has been a struggle, with the schools, with service providers, with family members. It has been even worse with “friends” because I feel there is still a stigma attached if you require any special services. People give it a lot of lip service and talk about how great it is to integrate special ed and general ed kids, but I have had mothers of “normal children” say really hurtful things to me about my son over the years. It has been hard, and at times it has been terribly depressing to deal with the social aspects of having a special needs child, but your post has reminded me I am not alone. I admire you so much. Thank you for writing this post. It has touched my heart. XO, Jill

  37. Coty Farquhar
    April 3, 2013 / 7:31 am

    Susan, If only we could all let go of expectations our world would be a wonderful place.
    Thank you for sharing this today, I am so grateful for your story,
    I can see that you (your soul) is fully capable of living your life with a disabled child, not many could do it. I too grew up with a disabled cousin, she was very close to me and also close in age. She and I are now both 50 years old and she too has the mind of a ten year old and she still sees me as her little cousin when we used to play together.
    I know they are angels, I know they are and how blessed you are to live with one each day.
    xxxx Coty

  38. April 3, 2013 / 5:08 pm

    Susan, I liked you before I read this – I love you now! Even though I have a mild “high functioning” case of Cerebral Palsy I completely understand what you’re going through. As a child I went to Easter Seals rehabilitation and met many, many other children and adults with CP far worse than mine. I understand all too well the stigma associated with this condition. It has changed over the years but I think political correctness has simply driven it from out in the open to behind closed doors. The bottom line is the more people know about what it’s like to live with all of the different experiences that are Cerebral Palsy the more likely they are to be supportive and accepting of people like your son – and you, his loving caregiver. Thank you so very much for sharing this part of your life with us. Give your son a hug for me and know that he’s part of the reason I write my own blog.

    Spashionista (Alicia)

  39. April 3, 2013 / 5:14 pm

    All I can say is, “God Bless You, Pseu.”

  40. Chicatanyage
    April 3, 2013 / 5:02 pm

    A very moving post. I know how difficult it can be raising a child with any kind of difference and yet so rewarding as they develop into their own person.

  41. April 4, 2013 / 12:03 am

    An extraordinary post about an extraordinary family. Thank you for not only your frank report on “being there” but for your evident love and commitment. Not everyone has done this, and I’m grateful to you, and to other parents raising disabled children for their dedication and spirit.

  42. April 4, 2013 / 3:16 am

    What a fortunate young man to have such a mother. This blog often seems like your little refuge, a place where you can indulge in the fun and not terribly important, away from work and family. Hats off to you. People always say to me they don’t know how i do it (have energetic twin boys), and I say it’s like anything — you just do it because it’s what one does. Still, wow.

  43. coffeeaddict
    April 3, 2013 / 8:50 pm

    Beautifully written! As for the terms used, I’m happy you openly use words like challenged, retarded, impaired etc. For a year now I’ve been involved with a project that aims to make visual arts more approachable to blind people and on several occasions we’d get that awkward silence in the room when the leading experts or prominent advocates of the blind were struggling to express themselves not knowing if it’s appropriate to say: blind, people with disability or something else. It irritated me to say the least because what I’ve come to understand that people don’t care how you address the disability as long as you are respectful, open minded and genuinely willing to help and listen. So in short no amount of prejudice can be masked with the politically correct terms.

  44. April 4, 2013 / 4:57 am

    I, too, spent most of my life not thinking very positively about people with mental disorders. I worked in a public gathering place that attracted many people who were challenged – some homeless, some mentally challenged, some with down syndrome. Interacting with them was part of daily life, so I learned how to avoid upsetting people, and eventually got to know individuals and understand them. Then I had a roommate who worked for a non-profit that assisted mentally retarded adults, and she gave me an entirely new view of how people live – she constantly talked how most assistant groups treated her clients like children when they were really adults.

    Then my son befriended a kid in grade school who, now, we are pretty sure is an Aspergers kid. Oddly enough, his uncle is a down syndrome adult, and his mom is a special ed teacher.

    What an eye-opener it has been for me to have navigated this path – and even now I do not know enough, really, to understand it. But what I am blessed with is to have witnessed people who are compassionate and who care.

  45. April 4, 2013 / 5:00 am

    My comment was not as well written as I intended. I meant to include how grateful I am that you are sharing your story, and how much I admire your strength and the love you have for your son.

  46. April 5, 2013 / 11:52 pm

    Thank you for sharing. Only a mother can understand the profound love that goes with such a profound challenge. Your experience has contributed to making you the gracious woman we enjoy!

  47. Ann Wood
    April 6, 2013 / 4:20 am

    What a loving post. Life’s challenges expand life in so many ways–makes more love than we thought possible. I am experiencing dementia on the other end of life and this has change me. I admire your ability to share your experience and your love for your son.

  48. April 7, 2013 / 8:20 pm

    I cry for your bruises and physical pain and thank you for sharing your joys as well. When you look great, there is so much more going on there that makes you shine. Thanks for sharing this.

  49. MacTheDog
    April 8, 2013 / 2:34 pm

    Thank you. For sharing your so very personal stuff on here for the rest of us.
    Thank you.

  50. Faux Fuchsia
    June 16, 2014 / 4:39 am

    was looking throughout the archives and read this and just wanted to say how much I admire your strength andy courage and I agree that your love for your son shines through. xxxxxxxxxxx

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