Elmo ABC's
We still watch a lot of Elmo in our house.

It’s the first Tuesday of the month (it’s still Tuesday, isn’t it?) which means that it’s time for the By Invitation Only gathering, where bloggers from all over the globe share their take on a particular topic. This month’s topic is “your greatest challenge.”  Other than TIME, which is why I’m so late to the party, here’s mine:

Those who have read this blog for some time may be aware that I have a teenage son with severe cognitive disabilities. We’re fortunate in that he has few physical or health issues, other than mild Cerebral Palsy which hasn’t stopped him from walking, swimming and even skiing, seizures which are well controlled by medication, and that we’ve been able to get him into a special school that he enjoys and with a curriculum that’s relevant to his intellectual level, focusing more on life skills than abstract concepts.

Over the last couple of years we’ve been dealing with his aggression and behavioral issues which have sharply curtailed outside activities, and made it almost impossible to take him to once-favorite activities or family functions. Things are a little better in the last few months thanks to the new school and the wonders of modern pharmacology, but our ability to go out and do things as a family is still very, very limited as we can’t predict his behavior, especially outside of the house. While every stage of his life has had its particular challenges, this has been one of the hardest for us to get a handle on.

It can be very isolating, which is why blogging has become so important to me. The relationships I’ve made and community I’ve become a part of through blogging aren’t something that would have been possible without this medium.

By Invitation Only

You can see what the rest of the By Invitation Only bloggers have shared about their greatest challenges at Splenderosa.

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  1. Oh my darling friend, this is such a difficult period, I know. But, I can only believe that it, too, shall pass. The love and devotion you have for your son is enormous and you should be so very proud of yourselves that you’ve come this far with his treatment. I concur exactly with what you say about blogging and bloggers. A beautiful community is exactly what it is. I am fearless here and know, with a little help from my friends, no matter how bad the day I am cheered.
    Sending love X10

  2. hello deja! i’ll read the full article later, but wanted to let you know right away that my nephew has had some very similar stuff – developmentally delayed, autism spectrum. Anyways he’s 15 now, in those teenage years where the ‘miracles of puberty’ can cause more upheavals than they do in even everybody else. So – you aren’t alone, as i’m sure you know. Also, just when one might expect things to become even more difficult with social interaction, due very largely to his mom and dad really pushing for him to be in the best school situation available to him his social skills have improved tremendously in the last couple of years. Nephew would always say ‘hi aunti steffi’ and give me a nice hug, but in the last year he’s started and maintained at least one conversation with me every single time i’ve seen him. HUGE and also really fun! He’s getting much better at controlling his impulses and talking about them, able to sit and eat and talk at the table longer and longer, all that good stuff.

    Your guy is SO fortunate to have a smart and diligent mom!!! I don’t have to tell you to stick with it and all that, but i did to say ‘hi’ and even tho it can be really hard and take a long time and aggravation and there’s rough spots, that it is possible for your guy to learn and grow. And what a blessing these internet places are – like pen pals to the nth degree 🙂

    You and yours have a great evening lady, take care, steph

  3. We had a slightly different situation but with similar characteristics with our third son. My heart goes out to you on so many different levels as I know and understand much of what you are going through. My son is now 25 and a very decent human being, but it’s still a challenge and might always be a challenge. Take care of yourself and your other relationships and get the best help you can, including legal if necessary. Celebrate the good days and each step forward, and remember that as your son grows, it does get better.

    Your blog brings many of us much joy, hopefully it’s a good outlet for you. Hugs to you

  4. I am in awe of your courage and patience…I hope you know that many of us admire you greatly.
    I, too, feel my life has been greatly enhanced by my blogging community.

  5. Very touching piece of writing and I wish you courage through this stage of life. You do a wonderful blog and I enjoy your posts. I’ve cared for elderly parents and my work is mainly alone so blogging is an enjoyable social connection for me. I’m glad you have blogging as a visual pleasure from the stress right now. I’m hearing in this post what a thoughtful Mother you are.

    blue hue wonderland

  6. I already felt fortunate to have happened upon your wonderful style blog. Now I admire you even more. I offer you and your family my heartfelt and continuing best wishes.

  7. We also have a child that has disabilities. Abby is 14, she has Mowat Wilson syndrome . Overall, she is a very happy girl. Our family will keep you and yours in our prayers. Thank you for sharing yourself with us . Your blog brings such enjoyment to us.
    Very best wishes,
    Elicia ( elise) McGinn

  8. I’ve thought before about how challenging it must be to deal with your son as he gets older and bigger, but I hadn’t thought about how it keeps you away from social gatherings. That’s a very difficult balancing act, and I agree, blogging is a wonderful way to feel like you’re able to communicate and socialize in a way that works for you. I admire your strength always, Sue!

  9. Thank you for sharing the family background to your blog and what it means to you. Feeling that you have support, whether on line or in person, is such a help with life’s difficulties. I admire your courage and determination and am glad to be part of your blog community.

  10. I know you don’t ask for them, but (((())))) any way. I agree, you are an extremely dignified person, and it shows always in your blog and now here again. I don’t mean stuffy dignified, but personal dignity.

    We should sort out a California meetup somehow.

  11. What an honest blog. I cannot imagine how difficult some days must be. I can tell your son is fortunate to have extremely devoted parents. He is blessed. You make the difference. One of my nephews has Aspergers Syndrome and everyday is a challenge. This year his brother was in a terrible car accident and is now a quadriplegic. Everyday my brother and sister in law get up and face the new normal. They have my respect and admiration. In the words of my Mother in law, “life goes on, make it count”.

  12. I so enjoy reading your blog and admire your grace and dignity. I am glad you connect with your readers. We certainly feel connected to you. Best wishes.

  13. I admire you for talking about your family situation honestly and without code words that would embellish or distort the reality. In my current work I am surrounded by people with various disabilities and for the most part the major problem we have is that we still live in a very closeted and narrow minded society and a vast array of prejudices and discrimination. It’s refreshing to read something open and honest.

  14. Being close to similar situations on both sides of our family, I have to congratulate you and your husband on maintaining joy and interests and life balance while caring for your son. So many parents in your situation, with the best of intentions, get the life sucked out of them, sometimes to the point of even losing their marriage. Each time I read a post about you and your husband going to dinner or planning a fun and romantic trip, I offer up a virtual high-five.

  15. You give us a lot through your blog, so I’m glad to hear that you enjoy it from your end. I wish you and your family all the best in dealing with the challenges that you face.

  16. One of the reasons I love reading your blog–besides your fabulous style and beautiful writing–is that you have challenges in your life, and you let us in on them as you do here. As someone who also has challenges in her life, but loves to think about beautiful things, I’m a huge fan of your blog.

  17. I have recently started following your blog. I just wanted you to know that I find your honesty and grace in such a challenging time truly inspiring.

  18. I am relatively new to this blog. Reading this entry has certianly helped to understand and to appreciate your life, as well as style choices, and I admire your ability to maintain balance and joy in your life, despite the obstacles.

  19. Thank you for this post! Your openness and honesty are so appreciated. As someone who has dealt with similar challenges with my son, it always gives me a feeling of encouragement when I learn about someone walking a similar path and doing so with such grace and strength. You are doing such good work with your blog, on a multiple of levels!

  20. As a special educator I have to say I so wish I had the privilege to work with more parents like you. Unfortunately, that is not typically the case and your son is such a lucky young man. And can I say kudos to you for making sure he is in a placement where he is exposed to an educationally and developmentally appropriate curriculum. That is the single most difficult thing for me working in public schools. I feel that it is particularly cruel to try and force my students to engage in activities and comprehend concepts far beyond their capabilities when there are far more relevant and important things I should be teaching them. To see their faces and sometimes their tears when they are struggling to take a grade level standardized test dictated by the state breaks my heart. Keep doing what you’re doing because you are doing it right.

    1. And kudos to you, Debbie! We have such an appreciation and are in awe of the special educators in our lives. They are truly angels on earth, and have made such a difference for our son.

  21. I truly enjoy your blog and am glad it helps fill a void for you. My son has type 1 diabetes and while it doesn’t keep him from a “normal” life, I know the daily grind of always, always , ALWAYS having to factor it into every hour of the day with food, insulin, testing, highs and lows, etc. I read a LOT and listen to many podcasts and have heard amazing things with behavioral issues and food sensitivities and we’ve even had some success with some nutritional changes for my son. Just a thought–and perhaps you’ve done plenty of research on your own and already reached your own conclusions with your specific circumstances. You sound amazing and your son is blessed to have you! Sounds cliche I know but it really is a journey that requires tons of patience and love.

  22. As others have noted, your son is very lucky to have you & your husband as parents. I have read that the hormonal changes of adolescence are especially hard on kids with behavioral issues and developmental delays–and their families. My son is on the autism spectrum & is definitely getting more aggressive & has a lower frustration tolerance (even on loads of medication) as he nears adolescence. From what I understand from moms with older kids, it gets easier as they get past that period. I am going to a session tomorrow on dealing with aggression & behavioral issues with special needs kids. I’ll let you know if I find out anything helpful.