October is National Down Syndrome Awareness month

[MyBlueLobsters]

I just wanted to take a moment and tell you a little more about our story with Logan. I didn't know much of anything about Down Syndrome before Logan was born and have learned SO much in the last 3.5 years.

 

I was 26 when Logan was born and we did not know before he was born that he was going to have Down Syndrome. Logan was also born with a cleft palate. The Dr told us within a few minutes that he suspected that Logan had DS. I felt as if I had been punched in the stomach. I was so fearful of the 'unknown'. So many thing ran through my head that night and I was just so upset. I remember crying a lot and just wishing that God had given us a 'normal' child. I remember feeling scared that my husband would be angry with me (having a 3rd child was my idea) and wondering what would happen to our marriage. I remember later that night when my husband and I finally were alone (Logan wasn't able to be in our room) I asked my husband what he was feeling and his response was simple, but totally put me at ease, he said "I am just amazed about how much at peace I am about this" From that moment I knew that we were going to be okay, our lives weren't over...a new chapter had just began. My husband and I talked all night and just meditated on Psalm 139. Those verses took on a whole new meaning for me that night. God had knit Logan together this way FOR us, for our family. Logan was 'fearfully and wonderfully made' just like my other boys were. Just because Logan was 'different' didn't make him any less a gift from God.

 

Fast forward to now. Well, our lives have changed. We are different, God has used Logan to teach us many things. Todd (my DH) and I have grown so much closer since he's been born, we have grown closer to our other boys too. Zach and Aiden have so much patience, far more than I ever had as a child. Watching them with the Logan brings us so much happiness. Our priorities have changed, we have learned to slow down and just enjoy things differently than we would have in the past. A few weeks after he was born, I talked to a mom who had a grown son with DS and she said to me "Emily, if you love this little one unconditionally, and let him love you in return unconditionally, you will expierence a love few ever encounter" At the time I didn't know what she meant, but I am starting to learn what she was talking about. I could go on and on about what we have learned, but for time reasons, I will stop talking.

 

Anyway, so October is DS awareness month...if anyone has any questions (no matter what they are) feel free to ask. I will do my best to answer them. Thanks for listening! :grouphug:

[sleepy]

A few weeks after he was born, I talked to a mom who had a grown son with DS and she said to me "Emily, if you love this little one unconditionally, and let him love you in return unconditionally, you will expierence a love few ever encounter"

:crying:

 

Thank you for sharing your beautiful story of love and acceptance. :grouphug:

[Miss Marple]

Oh, thank you for sharing this. It is heartwarming to hear your story. I have 2 OB/GYN physician friends who have been blessed with DS children. They echo everything you have said. Thank you again for showing us that God doesn't make mistakes.

[Nicole M]

Thank you so much for this story.

 

My father-in-law died last night, and I am so much more painfully aware today about how fragile our lives are, and what a gift each life is. Thank you.

[MyBlueLobsters]

Thank you so much for this story.

 

My father-in-law died last night, and I am so much more painfully aware today about how fragile our lives are, and what a gift each life is. Thank you.

 

I'm so sorry for your loss :grouphug::grouphug:

[Nicole M]

I'm so sorry for your loss :grouphug::grouphug:

 

I'm sorry! I didn't mean to hijack your thread. You are very generous. I really do feel privileged when I read stories like yours. It is a great gift that you and others here give us when you tell your story. We are very lucky to have you -- I've always appreciated your honesty and passion. Thank you.

[Mom2legomaniacs]

Thank you for being so open with others in order to further awareness. He was brought to your family for a reason. He is a beautiful boy and very fortunate to have you for his mother. :grouphug:

[Quiver0f10]

Thank you for sharing! :grouphug:

[ma23peas]

Yes!! A love very few of us will get to share! Thank you for sharing your sweet angel with us and the way your life has changed to embrace this child and all his gifts!

 

I spent a week with a child with Down's Syndrome (she was about 3 at the time)...their parents had to go out of town and I lived in their home for a week watching their two children. The hardest part I had was in dealing with her sleeping habits, I would wake up and 2am and she would be staring at me in the bed, she really didn't want to sleep with me she just wanted to sit with me while I slept...I was just very afraid that she would get hurt....but we got into a routine where she would just come into my bed and watch me or play with my hair and then she'd fall asleep....it was really amazing and she was the first to give hugs and really strongly embrace you...I learned a lot that week!

 

You might could help us by sharing any misconceptions you had about DS children before and how it's changed now...

 

Thanks!!

Tara

[Marie in Oh]

I love hearing stories like yours. And I love seeing DS little ones. So many of them don't make it to this world.

 

I remember being at the park and I saw a mom with a ds son who was about 5. I made a comment of how sweet he was. The mom said she was going to write a book about a lost group of children-- ones whose lives are expired before they have a chance to live it simply because of the results of an ultra sound. I thought that was very profound.

 

I assume you didn't have an ultrasound or they didn't see anything when they did as you said you were taken off guard at his birth? You said to ask anything-- would an ultra sound have changed anything for you and your dh? I ask not to put you on the spot, but we know a family who does not have ultrasounds and their last baby was born with DS. They are experiencing the same blessing as you, and they say it would not have made any difference to them. Just curious if you feel the same.

[Annie Laurie]

Thabk you so much for sharing this, you have blessed me today. :grouphug:

[Remudamom]

I love the Logan story. I was sitting right here at this desk when I got the call that he was born!

[MyBlueLobsters]

You might could help us by sharing any misconceptions you had about DS children before and how it's changed now...

 

Thanks!!

Tara

 

Well, having heard several grown people with DS speak, I was pleasantly

suprised at how far people with DS have come. Not in the far distant past, if you had a child with DS you were encouraged to just put them in an institution where they could never thrive. Now with all the therapies and resources available, people with DS are living longer, becoming more independant, heck, there was even a couple who got married, both had DS. I would have NEVER known or guessed it. I know not all people with DS will be that advanced, but the possibilites are there. I hate to admit this, but I always had 'fear' of sorts being around people with disibilites, I never knew what to say or do or what they could understand. Having had Logan and being around lots of people with DS, I have learned, and as funny as this sounds, to just treat them like people. Don't know why I didn't just do that before! :001_smile:

 

Another funny misconception is that "People with DS are just happy all the time" which is SO funny....because Logan has got a temper on him the size of Texas! ;) Yes, he generally is happy, but I laugh when people say that 'he just must be happy all the time'.....they should come over for a day! :001_smile:

 

 

 

I assume you didn't have an ultrasound or they didn't see anything when they did as you said you were taken off guard at his birth? You said to ask anything-- would an ultra sound have changed anything for you and your dh? I ask not to put you on the spot, but we know a family who does not have ultrasounds and their last baby was born with DS. They are experiencing the same blessing as you, and they say it would not have made any difference to them. Just curious if you feel the same.

 

We chose not to have any prenatal testing with any of our pregnancies. I can honestly say nothing would have changed for us. If I were to become pregnant again, I might do testing, but just to be prepared in the event that there was a heart issue or something. In some ways I wish I would have known before, just to be mentally prepared (but I don't think you can fully be prepared for that anyway) and so I could tell people that yes I knew and chose to have him anyway....but on the other hand I am glad I didn't know, becuase then I probably would have worried myself sick with all the things that could have gone wrong. Thank you for asking :)

[MyBlueLobsters]

I love the Logan story. I was sitting right here at this desk when I got the call that he was born!

 

I have a picture of you and your girls here holding Logan when he was just a few days old! Awwwwww lol

[bumbledeb]

I'm so happy for you that you are blessed with Logan, as well as your other children. You obviously love them all very much and deserve the happiness they will surely bring you.

 

My first son, Jack, had DS. He was an amazing character, so full of mischief. He certainly could be the epitome of happiness and also sometimes tragically sad. He brought us a lot of joy and probably an equal measure of despair at times. He was always loving, and always loved but there is no denying that he was very difficult to cope with sometimes, especially as over the years his four younger brothers and sisters came along.

 

He died three years ago, not long before he was 14 years old and I miss him every day. The time we had with Jack was so precious, I wish with all my heart it could have been longer.

 

I know I don't need to tell you, treasure every moment with your darlings.

[MyBlueLobsters]

I'm so happy for you that you are blessed with Logan, as well as your other children. You obviously love them all very much and deserve the happiness they will surely bring you.

 

My first son, Jack, had DS. He was an amazing character, so full of mischief. He certainly could be the epitome of happiness and also sometimes tragically sad. He brought us a lot of joy and probably an equal measure of despair at times. He was always loving, and always loved but there is no denying that he was very difficult to cope with sometimes, especially as over the years his four younger brothers and sisters came along.

 

He died three years ago, not long before he was 14 years old and I miss him every day. The time we had with Jack was so precious, I wish with all my heart it could have been longer.

 

I know I don't need to tell you, treasure every moment with your darlings.

 

:crying: Thanks for sharing about your Jack. I am so sorry for your loss I can't imagine losing Logan, or any child for that matter. :grouphug:

[Mom2legomaniacs]

I have a question or two, if you don't mind.

 

What do you envision Logan's life to be like? Do you see him being somewhat independent into adulthood?

 

Does he have issues with normal sleep cycles and such? (I wonder if you get enough rest, dear)

 

As far as learning/schooling goes, what are you planning on doing with him regarding teaching? Will he be capable of the usual things only at a slower pace perhaps? Do you have plenty of resources for working with him in this way? How do you find those resources?

 

I have a friend with a dd that has CP. She had a stroke during her 1st month after birth. She is partially paralyzed on half of her body. I have been through talking it out with my bff for her multiple therapies and issues and the like. I am just wondering if you have a good support system for therapy for him and support for you as well. I know it is a challenge. :grouphug::grouphug::grouphug:

[TeacherZee]

Well, having heard several grown people with DS speak, I was pleasantly

suprised at how far people with DS have come. Not in the far distant past, if you had a child with DS you were encouraged to just put them in an institution where they could never thrive. Now with all the therapies and resources available, people with DS are living longer, becoming more independant, heck, there was even a couple who got married, both had DS. I would have NEVER known or guessed it. I know not all people with DS will be that advanced, but the possibilites are there. I hate to admit this, but I always had 'fear' of sorts being around people with disibilites, I never knew what to say or do or what they could understand. Having had Logan and being around lots of people with DS, I have learned, and as funny as this sounds, to just treat them like people. Don't know why I didn't just do that before! :001_smile:

 

Another funny misconception is that "People with DS are just happy all the time" which is SO funny....because Logan has got a temper on him the size of Texas! ;) Yes, he generally is happy, but I laugh when people say that 'he just must be happy all the time'.....they should come over for a day! :001_smile:

 

 

Once upon a time in a previous career we had a man with DS working in one of the stores where I was a manager. And boy did he have a temper:). Things had to be done his way or he would sulk. He was also smart enough to have worked out that he could use his disability to is advantage to get out of things, or well he tried as soon as a new person came to the store. Most of us were wise to what he could and couldn't do though so he rarely got away with it;)

 

Thank you so much for sharing your story. It is truly heart warming.

Edited October 10, 2008 by TeacherZee
spelling error was driving me nutty

[MyBlueLobsters]

I have a question or two, if you don't mind.

 

What do you envision Logan's life to be like? Do you see him being somewhat independent into adulthood?

 

Does he have issues with normal sleep cycles and such? (I wonder if you get enough rest, dear)

 

As far as learning/schooling goes, what are you planning on doing with him regarding teaching? Will he be capable of the usual things only at a slower pace perhaps? Do you have plenty of resources for working with him in this way? How do you find those resources?

 

 

It is hard to envision much for the fact that we don't know how severe his mental delays will be. I would love for him to be semi-indepandant. Maybe live in an apartment with a few other delayed friends and have us moms check in daily. However, if he is with us forever, that is great too. In fact my middle son has already announced that he is not getting married and will just take Logan to live with him :001_smile:

 

As far as sleep, it is much better. It will even get better when he gets his tonsils out and no longer has apnea. Last year when his health was so bad, I rarely slept. Both DH and I had to get up every hour to test his blood sugar to make sure he didn't seize and die in the night. I am glad that season of our life is over!

 

I have NO idea what to expect for schooling. It is starting to make me anxious because I have no idea what to expect. I know he will do fine though :001_smile: As far as resources, we have a large homeschool conference come each year and they have a sub conference for teaching kids with disibilites. I will be attending that this next year to start getting ideas, I can't believe he'll be 4....YIKES! :tongue_smilie:

[Mom2legomaniacs]

Your older boys sound amazing! You are doing such a great job with them. Logan is so adorable. I love that smooch picture with the horse (it was Jedi, wasn't it?).

[newsong]

Thanks for starting this thread! I also have a sweet little boy with DS who has both blessed our family and changed our outlook on so many things. Isaac is 5 years old (how quickly time has flown!). He is #7 of our 8 children. We also did not know he had Downs prior to his birth. We did not take the tests as they would not have changed anything for us. We did have high level ultrasounds done for other reasons but, although he was born with a heart defect, no markers were indicated. The news was a shock at first (I found out alone, at night, after my dh had left to make the hour drive home), yet I have to say knowing that this was something the Lord allowed, and knowing His ways are always good, made the transition to acceptance and than joy a much shorter journey.

 

Isaac had feeding issues at the start and the initial focus was to resolve those in order to prepare him for open heart surgery, which the doctors said he had to have by 8 weeks as the huge whole in his heart was too big to close on its own. We went in at 5 weeks for a pre-op meeting to find that God had begun to heal that huge whole and surgery would no longer be necessary! When we queried the cardiac doctor, one well respected in his field, concerning his earlier diagnosis, he just smiled and said, “Well, I’ve changed my mind.†He may have changed his mind but it was a miracle that prompted it!

 

I will tell you that to watch my son struggling for every breath and then to see him made whole with his life before him really put the DS in perspective. To have him alive with DS was far better than to be without him at all.

 

After that hurdle came other tests, doctor appts., and decisions, all of which felt very overwhelming and even intrusive at first. But they also turned me into a strong advocate for my child. I read and researched everything I could get my hands on. And my dh and I prayed for wisdom and guidance for Isaac and for our family. Before too long we had peace and a new normal (but not so very different from the old normal) that was right for our family.

 

It has been so good to see life through Isaac’s eyes. He never seems to miss the simple joys we have so often become oblivious to. Yesterday, he was standing on a hillside where the sun cast a long shadow of his body. He began to wave his arms and legs and watch his shadow dance. It brought giggles to his face and a smile to mine. Seeing life through Isaac’s eyes also has helped our family view other people with greater understanding and genuine interest, rather than uncertainty and fear. When we are out and about, we truly enjoy the opportunity to interact with those with special needs and to encourage those who love and care for them. My dd, almost 14, has said that if Isaac is not able to live independently when he is older, she wants him to live with her. In fact, she’d like to have a home big enough to have mini-apartments for people with DS.

 

Now that’s not too say the sunshine doesn’t get clouded over sometimes. In many ways, Isaac is just like any other little boy. He can and does drive any or all of his seven siblings crazy at times. Like when he feels the need to completely dismantle one of their rooms and experience the thrill of watching things fly through the room. His brothers and sisters do love him for who he is but they do get plenty of chances to exercise mercy and grace…or not. But than all is not peace and harmony with them day in and day out either.

 

I have hopes and dreams for Isaac just as I do for all my children. I hope with all my heart he will continue to be a reflection and reminder of God’s amazing love for all of us. I hope he will be able independently or semi-independently. I hope he will be able to enjoy the fruits of his labor in a job suited to him. If the Lord wills it, I hope he will be able to share his love with a special someone one day. But with all these hopes, I also remember what a wise woman said back at the beginning of this journey: “So you might have a child who wants to be with you and love you forever -- how bad is that?†Not bad at all.

 

Melissa asked Kim about schooling and resources. I can speak a little to that. For us, we are continuing to home school Isaac using a neurodevelopment program that addresses and integrates all of his needs. We see his ND every four months and she puts together a program which we (try) do with him each day. My dc and I divide up the activities and take turns working/playing with him throughout the day. We have seen wonderful growth over time with speech, motor skills, sensory issues, processing, etc…At the moment he can read about 200 words on flashcards and is just starting the Dick and Jane readers. He knows all his abc’s and can count to 16 on his own. Kids with DS do learn, just more slowly and through slightly different means. As an example, with my other dc we’ve focused on phonics over sight reading. With Isaac, sight reading comes first; his visual memory is better than his audio memory. So we make use of his strengths while working on his weaker areas. To date, we haven’t used individual specialists with Isaac, though we will if the need arises.

 

As far as resources, there are lots of them out there. When Isaac was just a baby I found Woodbine House books and they have been very helpful, along with others. I scoured the internet for information. I joined email lists geared toward DS with various foci such nutrition, development, alternative medicine, home schooling, research, etc…and these have proven very helpful. Through them I’ve learned lots from the real specialists - moms in the trenches who have gone before me. They’ve also been a great help in knowing what to look for and where to go when I’ve needed to see doctors or other professionals.

 

So life is different and in some ways harder that it was before Isaac, but we are so much deeper in character and broader in love for his coming. Thanks for celebrating Down Syndrome Awareness Month with us - there is much to celebrate!

 

Blessings,

Sandy

[MyBlueLobsters]

Thanks for starting this thread! I also have a sweet little boy with DS who has both blessed our family and changed our outlook on so many things. Isaac is 5 years old (how quickly time has flown!). He is #7 of our 8 children. We also did not know he had Downs prior to his birth. We did not take the tests as they would not have changed anything for us. We did have high level ultrasounds done for other reasons but, although he was born with a heart defect, no markers were indicated. The news was a shock at first (I found out alone, at night, after my dh had left to make the hour drive home), yet I have to say knowing that this was something the Lord allowed, and knowing His ways are always good, made the transition to acceptance and than joy a much shorter journey.

 

Isaac had feeding issues at the start and the initial focus was to resolve those in order to prepare him for open heart surgery, which the doctors said he had to have by 8 weeks as the huge whole in his heart was too big to close on its own. We went in at 5 weeks for a pre-op meeting to find that God had begun to heal that huge whole and surgery would no longer be necessary! When we queried the cardiac doctor, one well respected in his field, concerning his earlier diagnosis, he just smiled and said, “Well, I’ve changed my mind.†He may have changed his mind but it was a miracle that prompted it!

 

I will tell you that to watch my son struggling for every breath and then to see him made whole with his life before him really put the DS in perspective. To have him alive with DS was far better than to be without him at all.

 

After that hurdle came other tests, doctor appts., and decisions, all of which felt very overwhelming and even intrusive at first. But they also turned me into a strong advocate for my child. I read and researched everything I could get my hands on. And my dh and I prayed for wisdom and guidance for Isaac and for our family. Before too long we had peace and a new normal (but not so very different from the old normal) that was right for our family.

 

It has been so good to see life through Isaac’s eyes. He never seems to miss the simple joys we have so often become oblivious to. Yesterday, he was standing on a hillside where the sun cast a long shadow of his body. He began to wave his arms and legs and watch his shadow dance. It brought giggles to his face and a smile to mine. Seeing life through Isaac’s eyes also has helped our family view other people with greater understanding and genuine interest, rather than uncertainty and fear. When we are out and about, we truly enjoy the opportunity to interact with those with special needs and to encourage those who love and care for them. My dd, almost 14, has said that if Isaac is not able to live independently when he is older, she wants him to live with her. In fact, she’d like to have a home big enough to have mini-apartments for people with DS.

 

Now that’s not too say the sunshine doesn’t get clouded over sometimes. In many ways, Isaac is just like any other little boy. He can and does drive any or all of his seven siblings crazy at times. Like when he feels the need to completely dismantle one of their rooms and experience the thrill of watching things fly through the room. His brothers and sisters do love him for who he is but they do get plenty of chances to exercise mercy and grace…or not. But than all is not peace and harmony with them day in and day out either.

 

I have hopes and dreams for Isaac just as I do for all my children. I hope with all my heart he will continue to be a reflection and reminder of God’s amazing love for all of us. I hope he will be able independently or semi-independently. I hope he will be able to enjoy the fruits of his labor in a job suited to him. If the Lord wills it, I hope he will be able to share his love with a special someone one day. But with all these hopes, I also remember what a wise woman said back at the beginning of this journey: “So you might have a child who wants to be with you and love you forever -- how bad is that?†Not bad at all.

 

Melissa asked Kim about schooling and resources. I can speak a little to that. For us, we are continuing to home school Isaac using a neurodevelopment program that addresses and integrates all of his needs. We see his ND every four months and she puts together a program which we (try) do with him each day. My dc and I divide up the activities and take turns working/playing with him throughout the day. We have seen wonderful growth over time with speech, motor skills, sensory issues, processing, etc…At the moment he can read about 200 words on flashcards and is just starting the Dick and Jane readers. He knows all his abc’s and can count to 16 on his own. Kids with DS do learn, just more slowly and through slightly different means. As an example, with my other dc we’ve focused on phonics over sight reading. With Isaac, sight reading comes first; his visual memory is better than his audio memory. So we make use of his strengths while working on his weaker areas. To date, we haven’t used individual specialists with Isaac, though we will if the need arises.

 

As far as resources, there are lots of them out there. When Isaac was just a baby I found Woodbine House books and they have been very helpful, along with others. I scoured the internet for information. I joined email lists geared toward DS with various foci such nutrition, development, alternative medicine, home schooling, research, etc…and these have proven very helpful. Through them I’ve learned lots from the real specialists - moms in the trenches who have gone before me. They’ve also been a great help in knowing what to look for and where to go when I’ve needed to see doctors or other professionals.

 

So life is different and in some ways harder that it was before Isaac, but we are so much deeper in character and broader in love for his coming. Thanks for celebrating Down Syndrome Awareness Month with us - there is much to celebrate!

 

Blessings,

Sandy

 

Thanks so much for your post! You are far more eloquent with your words than I am. Your Isaac sounds just amazing! Thanks for sharing about him! Oh and a side note, Woodbine house published a book that a sory I wrote was in. The book is called "Gifts", have you heard of it?

[newsong]

Hi Emily,

 

Don't know where the Kim came from - sorry about that! Yes, I have seen the "Gifts" book at Woodbine but I haven't yet read it. How cool that you were able to share your story in it!

 

I just jumped over to your blog and got a glimpse of your boys - what a handsome bunch you have! And those pictures at the farm would have my village-dwelling dc downright jealous. I also watched the video of Logan and his new favorite word. I can see he has learned to use it well! :)

 

Thanks for the kind words about my words and about Isaac. I think you are plenty eloquent and I enjoyed reading about Logan!

 

It has been fun to watch Isaac grow and learn. When he was a baby I would look at all the charts and take all the measurements and gauge where he was in everything compared to "typical" children and to other children with DS. I think it was like some sort of security blanket. But like the child growing up, somewhere along the way I found I no longer needed the blanket. It was so freeing when I let it go. I still sometimes fret when life gets in the way and I feel I'm not doing all I can, but Isaac is developing on a timetable that is best for Isaac. My job is to assist him in the process and join him in the daily celebrations of his many and varied accomplishments. And, of course, to freely accept hugs and kisses for no particular reason at all. So much more fun!

 

Thanks again for sharing Emily -- and for adding another book to my reading list! :)

[cricket1178]

Thanks for sharing about your Logan. I also appreciate your post, Newsong.

 

I have a friend who gave birth to a DS baby 16 months ago. She has not excepted the diagnosis. She was very concerned about DS throughout her pregnancy because she was 43, but she didn't have an ultra sound because the outcome would not have mattered. The doc came in right after the birth and told her he suspected DS and wanted to run some tests. She never had any tests run. My df has chosen to believe the Lord will heal her little one. Her church is standing in support of her decision. I have been trying to support her decision, but it is getting difficult as the child is getting older. We live in a very small town and people are starting to ask, "Is there something 'not right' about baby?" I made the mistake of telling someone that she may have DS. My friend has not yet forgiven me. I'm not sure she ever will. I would love advice on how to be a supportive, loving friend without my personal thoughts interferring with her decision. I just don't want her to miss the beauty of the child she has because she is hoping for something else.