Personal

Celebrating My Son’s 18th Birthday – A Personal Story

Update: My son is now turning 21. With the significate changes made in medical genetics, he has been diagnosed with Baraitser-Winter Syndrome. Don’t worry no one has ever heard of it either. Apparently, at this time there are only 50 confirmed diagnosis in the world! Hard to believe isn’t it? The good news is my daughters chance of having a child with the same diagnosis is one in a million. For that I am thankful!

The late teens were a little rough for a year or so, but I am so thankful that the “HAPPY” Ryan is back! We love him dearly!

Back to the original post…

I have thought about writing this post for some time now, and I as I sit here today, I am not sure what to write? Today we are Celebrating My Son’s 18th Birthday, and I thought it would be the perfect day to share what it has been like to raise a child with severe disabilities. While there have been so many rough times in our lives as parents and as a family I (we) try to stay positive. It would take an entire book for me to explain all that we have been through and honestly I am not sure my words could ever describe how dark some of those days were. At times, we were without a doubt a broken family.

Celebrating My Son's life with multiple disabilities including autism and Baraitser-Winter Syndrome.

This year, as he boarded his little yellow school bus, the driver indicated that my son was listed as starting the 12th grade. At his school, they are not in classrooms based on how many years they have attended school but on skill level. Yes, he should have been starting his last year of high school, applying to colleges, getting ready for prom and graduation. He might have played sports in high school or played an instrument in the marching band…but none of these things will ever happen. Instead, six days a week we have a revolving door of therapist and home health aides coming to our home to work with him and to give us a little break.

Celebrating My Son's life with multiple disabilities including autism and Baraitser-Winter Syndrome.

While it does make me sad that he (we) did not get to experience these great moments in life, I cherish more simple activities and achievements with him. I released those feelings years ago of “what ifs.” From the time, he was a baby until the age of three every day I cried. There I was, a young mother, with a preschooler and a medically sick child with severe disabilities. It was heartbreaking, and I couldn’t help feeling “why me?” What mother wouldn’t? To me, that was the time I grieved the son I would never have. There was a sense of loss there…at least for me. The son who might have played baseball or performed in the high school musical…whatever his passion would have been.

I realized from that point on I could not go on feeling this way. Somehow I had to find the inner strength to look at life differently. I had to stop feeling sorry for myself and vowed to give my son the best life I could…and I have. I am happy to say I look at life these days with my glass half full and feel blessed to have him to love! He may be nonverbal, but every day he tells me that he loves me!

He has taught me to have a HUGH amount of patience, compassion and to be giving. Although there has been so much heartache, there also has been so much joy. Just listening to him laugh (he has a great belly laugh) brings a smile to my face.

Celebrating My Son's life with multiple disabilities including autism and Baraitser-Winter Syndrome.

My daughter made this cute little collage that she shared on Instagram today for his birthday. She is turning 21 this spring. The years went by so fast.RYAN COLLAGE .jpg

I could go on forever, but I think I will keep this simple. Below I am listing all the things that he has been diagnosed with. He has had many hospitalizations, procedures and takes many medications.

Diagnosis:

Baraitser-Winter Syndrome. |  Autism  |  OCD  |  Profound Hearing Loss  |  Crohn’s Disease  |  Exotropia – corrected with eye muscle surgery  |  Nonverbal  |  Walked at age 7 1/2

He has limited self-help skills and needs help with bathing, dressing, eating, and toileting as well as many simple daily tasks. There are probably more things, but over time I tend to forget!

If you’re ever having a bad day, keep this in mind…  I have been toilet training him for 7 years! Talk about having patience!! He has made great progress with much fewer accidents –  I am very thankful he has done so well! That’s right…I still carry a diaper bag…23 years 😉

Thanks for listening…

Susan

Susan B

Susan B

Hi, I’m Susan! Thanks for stopping by Oh My! Creative. I like to have fun, make fun things…you know, create stuff! I love DIY, decorating and design and like any girl…shopping and lunch!
Susan B
Susan B

Latest posts by Susan B (see all)

Similar Posts

42 Comments

    1. Thank you, Carolyn, for taking the time to read my story! Not often, but from time to time I think about what my son might have been like as typical young man. I am sure you find so much joy in you son’s lives…I do too…just in a different way! 🙂

  1. Thank you for sharing your story, Susan! I admire your strength and positive attitude! It really is inspiring. My son has a moderate speech delay and goes to ESE pre-school. I see many parents of kids with disabilities from other parts of the program, and every single one of them always have the biggest smile of their face. It definitely makes me think about many life joys and how to make the best of every situation! Stay positive and grateful like you are!

    1. Thank you, Lyuba, for your sweet and encouraging words! I really appreciate the support from other bloggers I have met online. We all want our lives to be perfect, especially our children’s, but it is amazing what we learn when life is imperfect. Yes, there is heartache, but there is no other way to be than positive. Wishing your son success with his speech therapy program!

  2. Thanks so much for sharing your story. It’s easy to forget sometimes that behind the great bloggers we follow, have imperfect lives and struggles just like the rest of us. I look back at my kids growing up years with a heavy heart. Similar to you, my daughter just turned 21 and my son (who’s birthday is the same day as mine) will be 18 in a few weeks.

  3. Thank you for sharing your story. Make’s you think about the things and people that we take for granted everyday. You have beautiful children. God Bless you all and I pray that God will keep you strong. I love your son’s smile…..so sweet!

  4. Beautiful Son, and a beautiful Mother. You both have amazing strength and courage, thank you for sharing it with us!

    1. Thank you, Sherrie, for stopping by to read my story! Your kind words mean and support mean a great deal to me!

  5. Thanks for sharing your story. I am sure you have gone to bed many a night with love in your heart because of your son. Always remember things could be worse. My 15yo daughter was murdered and I would give anything to have her in any measure of health. No matter my heartache, others have it much worse. Your son knows in his heart how lucky he is to have you as his Mom.

    1. Thank you! How tragic that you have lost your daughter…there is no greater heartache. Even though my son is less than perfect, I am not sure what I would do without him. I hope you can find peace in your life.

    1. It’s been a tough journey, but I am thankful for so many things, including have great blogging friends like you! Thanks for your support, Mary Beth!

    1. Thank you for such kind words! As mothers we all try to do our best with what life has given us. Many tough days, but alway finding the joy in the love I receive in the end!

    1. Thanks, Ashley, for stopping by to read me story! Yes, it can be hard to share such personal stories, but it felt like the right time! Can’t wait to meet you at Haven!!

  6. Wow Susan! I loved reading your story, you daughter’s picture collage is my favorite! How sweet they are! You are an amazing woman, truly Heavenly Father thinks much of you for entrusting you with one of his special sons. I can’t even imagine all the struggles and trials, but I am sure there have been many blessings as well. Keep up your great attitude, you are an inspiration to me and everyone else! Thank you so much for sharing!

    1. Thank you, Mindi! I do think he was given to me for a reason. I have given him everything I have…done the best I could! I try to forget about all the truly horrible times and look for the bright moments!

  7. Susan, I knew you were super creative the first time I came to your site. But what I learned today is that in addition to having fabulous creative talent you are also a strong, patient and kind individual. I really admire you. Your son is so lucky to have you as a mom. You are amazing!!!

    1. Thank you Stephanie! All the kind words that I have received on this post, about my son, will help me to continue to find the strength that I need. I couldn’t do it without constant support and understanding from others! Your encouraging words mean so much!

  8. Hi Susan, Your story is truly inspiring. You are a blessed mother and an exceptional human being who was chosen for this arduous task. I am a mother to an adorable 141/2 year old daughter who is profoundly hearing impaired and has a failed cochlear implant surgery (which led to various other problems). I have thought about so many ‘What ifs’ in the past…there have been some very difficult times and I expect more to come as she is growing… I have grown as a mother along with her and today I feel privileged when I say- I can’t think of my world without her, however she is (it may seem weird/ironical but that’s how it is). She is the soul of the family. Thank you for sharing your story, not everyone can do it (you inspired me to share mine…here on your blog). God bless your son. TC

    1. Thank you for sharing your story with me! I think we all are capable of taking on and dealing with things that we would imagine we can’t. That is what makes us stronger! Personally I am a better person, for so many reasons, due to the things that I have endured. Sure I wish there are things I could have changed over the years, but not really for me, but for improving the quality of my sons life. I know life is good…sometimes I feel he will miss out on so many things because of his disabilities. On the other hand…I know that he will never be able to realize that. In his eyes life is good just the way it is 🙂 And that makes us all happy!

  9. What a beautiful story.Thank you for sharing this. I, too, am the mother of a special needs child who is 161/2 now. My journey like yours has had its ups and downs over the years.

  10. Thank you so much for posting this!

    I was searching for wedding ideas using bandanas as napkins and I found your site. I am getting married in July and both the groom and I each come to this marriage with a son on the autism spectrum. My son was just diagnosed a little over a year ago…he is 25 so it was a late and over due diagnosis but on the way to finding out what was going on for him there was a long road of struggle for him (us).

    I will keep it short because I really just wanted to thank you from the bottom of my heart for this beautiful and positively uplifting post. 🙂

    1. Thank you so much, Christine! I have tried to stay positive all these years…lately we have had some tough times. We just need to keep plowing ahead in hope of brighter days! Congratulations on your wedding! I hope you have a beautiful day!

  11. Thank you for sharing your story. I also have a disabled 13 year old son. Never could I have imagined raising a child with disabilities. I think back 13 years and thought life was over for our family. I wish I could have told myself it was going to be ok. We couldn’t imagine a different life. I have learned what unconditional love is from him. It’s always comforting to read other’s story. It makes me feel I am not alone on this journey.

    1. Hi Judi! You are not alone. While all of our stories are different we all have journey that others can’t understand giving us a special bond. There have been plenty of tough days but I couldn’t love my son more. My heart breaks for him in so many ways. Thanks so much for stopping by and leaving me a comment. Wishing you the best for your son and family!

  12. Just stumbled onto your post. As a Specisl Educator I loved the poster your daughter created. The pictures she chose show such a loving bond between your two children!
    Have you heard about the new nike shoes? Nike Unveils Shoes For People With Special Needs – Disability Scoop
    http://www.disabilityscoop.com › 2015/07/15
    Jul 15, 2015 – Matthew Walzer sports a pair of Nike’s new FLYEASE shoes as Tobie Hatfield, who designed the more …

  13. Salamo Alaikom
    Allah bless both of you.
    Taking care such as innocent son, will cause you lot of bliss and great sequences.
    Kind regards.

  14. Hi Susan,
    I’m so glad you shared with us. It shows how caring people can be.
    I remember many years ago on a tantrum day in the grocery. A woman came up to me as I was trying to regain control. She said, “Don’t worry. “God only gives you what you can handle”, and walked away. I was near tears when the cashier said to me,”Watch my register a minute”, “I’m going out and smack that woman”.
    We both started to laugh, the people around us applauded, Sondra calmed down and stared in awe at the people laughing and clapping.
    I know each and everyone of us who have been there and even those who have not, would take away a bad day from your journey if we could.
    All the best to you and your family,
    Linda Hall

    1. Linda, your words bring me to tears! It’s been a real journey and will continue to be for the rest of my life. Most people we meet when we are out and about are very supportive, but like anything, it’s different when you are living it. I hope your life has leveled out to a more peaceful journey! Thanks so much for sharing with me!

      If only a few could take away the difficult days…

  15. Susan, what a touching story of your journey in life…and your family’s. There truly is no greater love than the love of a mother…even in such a difficult situation. I have worked with mild disabilities with children, and my own son has Tourettes Syndrome…it seems you were certainly given a great deal to handle. Sending strength and hugs, sister! xo

  16. Thank you for sharing your story Susan. Even with all your moments of joy it must really be a hard time for you and your family. You make me feel very humble and admire you greatly X If you ever need a chat as sometimes a stranger is what you need please email me.. if I can’t help I can listen xx

    1. Thanks, Christine, you are so very sweet. It’s been a hard road but I keep plugging along. We are hoping to resolve some of the issues we are having next week with a team meeting. I do have some great supporter for my son. It’s unfortunate that an agency that is supposed to be helpful and supportive of individuals with intellectual disabilities would behave in the manner they did.

      Again, thanks for your kind words!

  17. Hi Susan. My daughter also has Baraitser-Winter syndrome. It was good to read your story about your son. There’s a Facebook support group that is really helpful. I couldn’t see you on it so thought I’d let you know once you be interested in joining it

  18. I work with severe special needs kiddos at our middle school. I watch them go through high school and follow up with them through various Unified Sports programs we have here in our school district. After graduating, we have a Bridge Program they can attend until 21 yrs of age. We also have Wellspring, which was started by a local mom for her son, a family that had your same struggles with what to do after kids transition and age out of school programs. Please look up Wellspring in Castle Rock, CO. I’m not sure where you live, but they can give you great information and maybe ideas on how to start your very own program! God bless you. What a wonderful mom, you are ?

  19. Hi Susan. I just read you story. You and your family are amazing. I hope all is well. I am sure the journey with your son has been an adventure you never expected. When I was a kid I babysat for a family that had a child with Progeria, the condition that ages a child’s body too fast. I always felt his mom was a super woman. She had so much on her plate and she handled it all… not that I saw it all. No one can ever really know everything you are dealing with…. and I know I am very late to your original post. Wishing you and your son well.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.