DownSyn Forum

Julia'smom · Posted: July 20 2011, 1:10 PM Post subject: 6 months is hard!

It's been a while since I posted, but I thought maybe y'all could understand how I'm feeling. Ever since Julia was born, I was told she wouldn't "necessarily" do x,y, or z until 6 months of age. Well, she's 6 months old today, and we went to visit a bunch of friends who also have babies, most of whom are under 6 months of age.
They are all holding their heads up and sitting up (at a minimum). I haven't felt this way before- I thought Jules was ahead of the curve- but today I feel like she's no longer "just like any other baby." Somehow, with the advent of this day, she's become a "special needs" baby, and I'm talking to the intervention person to start her on PT. She's the same sweet, adorable kid, and I wouldn't trade her for anything, but a part of me is grieving today. Grieving for the time when people wouldn't know that she's "different." Grieving for my really active little girl who would like nothing more than to hold her head up and sit up (she tries sooooo hard).
I knew this day would come, but I'm having a tough time with it. She's also having issues focusing, so we have to go to the opthamalogist (sp?) and the ds clinic in town. We're lucky we have so many resources, I know, and I realize some of you don't. I don't mean to complain, really, I just have nowhere else I can share what I'm feeling today.
On a positive note, these have been the best six months of my life. I adore my snuggly little girl and can't imagine life without her. I know she will hold her head up, sit up, crawl, and walk eventually--she's already got hugging and kissing down. Please stop by and wish her a happy birthday!

_________________
Kathy

burnsun · Posted: July 20 2011, 3:19 PM Post subject:

somedays I feel hugging and kissing are the best place to start! And it does seem to come in time..... and I have heard a lot he or she will do this by time....fill in blank only to be wrong.

I go with the modified expectaitons approach nowaday.....

I had that feeling you are describing at our four month dr visit with our new little one..... it is one very annoying and persistent feeling of awful in my book and I have done this many times..... with each child at a different point in their development

Our new one we just adopted does not have ds..... I wish she did cause there are some "norms" for her there are none.... just has the Emma curve!!

Just know that we have all been there and eventually sn parents are cool and you will not want to be any other kind......

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

Gracies mom · Posted: July 20 2011, 5:07 PM Post subject:

Hi Kathy
Can I firstly say your little girl is just beautiful and reminds me very much of my own little one who's 7and 1/2 months old. At 6 mths old Grace was struggling with her head control and I would wonder if it would ever come. In the last 6 weeks she has come on like you wouldn't believe:-) Trying to crawl and sit up( although not managing either yet) but oh so close! With me I always forget Grace has ds, and it's not untill I'm in a situation like you described that I remember she's alittle different..... And the reality can hit home. And I'm sure we won't be the first or the last to feel that way....But like you I wouldn't change a thing and I feel lucky. Lucky that I've been chosen to be a mommy to such an amazing little person . Enjoy your little one because she will be all grown up before you know it x

_________________
Cheryl mom to Hannah 10/11/94, Grace 30/11/10 ds, Stepmom to Ethen 30/06/00 and wife to John married Aug 06

burnsun · Posted: July 20 2011, 6:12 PM Post subject:

You guys have the cutest babies!!!!!!!!!!!!! I foget how cute and agelic our little ones look! I love the eyes with the bright spots and the smile!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

AliMama · Posted: July 20 2011, 6:39 PM Post subject:

What a beautiful smile she has! {{{{{{HUGS}}}}}}} Those "ouch" moments are hard, and they seem to come at different times for different people. Just know you always have people who understand here.

_________________
Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-2009

HAnd · Posted: July 21 2011, 2:17 AM Post subject:

6 months was very hard on me too. My Kyle didn't sit until he was about 11 months old. At 8 months he was rregularly thought of as an 8 week old baby. I remember crying a lot at about the 6 month mark, not because I loved him any less, not because I wasn't proud of him. But because it was so hard to see all these other babies suddenly leaping ahead of him developmentally. I even went so far to avoid two of my friends that had babies within a month of Kyle. I guess what I'm saying is what you are feeling is completely valid and normal. Now that Kyle is almost 2 I don't ever compare him to his peers. I learned to accept he was where he was... but it did take time and lots of tears to get where I am today. Give yourself the permission to grieve over this, it will make it all the more amazing and momentous when she is able to sit up or hold her head up.

_________________
-Heidi wife of Kevin and Mom to Nikolai-12, MaryKate-11, Sara-4, and Kyle (T21)-9/27/09 is a big brother! To Eon- 9/2/12

TheBradyBunch · Posted: July 21 2011, 9:57 AM Post subject:

The best thing you can do for yourself is get rid of timelines! Tell all your therapists not to mention a specific age or timeline, because your daughter doesn't really care when they say she "should" be doing something!! She will do it when she's good and ready. Yes, it will take a lot of work, all you can really do is keep giving her tummy time and hope for the best. It's hard to watch them try so hard, and still, struggle...it's even harder to leave your bubble and enter reality....it sucks to see babies younger or the same age doing SO MUCH MORE.

This is all part of the journey, and I still have those moments. The little boy that lives below us is actually 7 months younger than Noah, and so much bigger. The kids were all playing together the other day in the back yard, Charlene (my 5 year old), Noah (my 4 year old with DS who looks more like a 2 year old), Jesse (my 3 year old as of the 25th), Caden (the little boy down stairs who's almost 4), and Tessa (my 15 month old). Noah was the only one who really had no idea how to play or what he was doing...he was just sitting in the circle smiling at everyone while they played their game...even Tessa had more of an idea of what was going on. That made my heart hurt. In that moment. I don't have them often anymore, but I had it then....

You're not alone, and you're not complaining. We all have a right to these feelings regardless of the services we receive. I'm just thankful we also have a place where we can come and share them with others who are on a similar journey and can relate!

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

Edensmama · Posted: July 21 2011, 11:51 AM Post subject:

Hugs to you, mama! Please know you are NOT alone in having these feelings. I think most of us can relate and we know that it doesn't mean you don't love your beautiful girl with all your heart and soul. My feelings of grief have significantly lessened over time but I do still get pangs once in a while. I'm not sure that will ever completely go away, but who knows! What I do know is Eden is the joy and love of my life and I just thank God every day that I am so blessed to be her mama. And at age 3 those hugs and kisses are still just as precious as you describe at 6 months!! Smile

_________________
Nathalie
Mom to Eden (DS) 4-13-08
Wife to Luciano (the best daddy in the world) since 10-8-2005
www.caringbridge.org/visit/edensalem

Tigger · Posted: July 22 2011, 5:34 AM Post subject:

Julia is so beautiful. I remember that it was at about 6 months old that it was very obvious that Talitha was delayed. She was really like a newborn - in size and ability - at that age. People used to be so shocked when I said she was 6 months old because she really looked like a newborn. Nowadays you wouldn't know that. She is doing really well. Still delayed but that is the reality of DS. Even though she took a long time to reach many physical goals, she is incredibly active and able physically now.

I remember waiting for her to be able to hold her head up, to sit up by herself, to crawl, to stand, to walk and all of them seemed to take forever. But she got there and there was a huge celebration every time Very Happy

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

youdontknowJack · Posted: August 07 2011, 10:53 PM Post subject:

Jack will be 8 months old in 10 days.
He still doesn't sit, and his head and upper-body control did not even show up until we were at the end of 6 months.
Jackson is still not 12lbs, and I get the "funny look" when I tell strangers how old he is...
I decided not that long ago, that I was really going to savor the slowness with which my boy grows. I remember his brothers tearing my house (from knee height down) apart at this age, and I enjoy having a little guy who stays (almost) where I put him.

I know it is hard to see what typical babies of the same age are doing. Furthermore, parents LOVE to compare children and swap "susie did this yesterday" stories. It can make you feel alienated. That is probably the biggest reason I have for joining the local DS chapter, to be around non-competitive parenting!

_________________
Monica Mom of Ayden (10) Zavien (8 ) and Jack (2)

earlyam · Posted: August 08 2011, 2:15 AM Post subject:

A couple of friends had babies the same time I had Ethan and I remember finding it sooo hard to not compare when their kids started reaching milsestones that Ethan hadn't. Going to toddler groups and seeing other babies was real hard too.

I can't remember when Ethan started to roll over, but he was quite late, sitting came at around 11 months, although he was pretty wobbly still!

Going to my monthly DS support group has been invaluable for me.....celebrating and understanding your child's achievements however big or small with people who 'get' you and the emotions that come with raising a child with DS are priceless!

_________________
Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)

MommyAngela · Posted: August 21 2011, 10:33 PM Post subject:

Sigggghhhhhhhh

You're right--six months was hard. Benjamin had his OHS at five months, so it was especially hard b/c he was still so delayed.

I honestly didn't have my first "wave" of DS acceptance until B was about nine months old. And, honestly, I'll be the first to tell you that even now, 3.5 years later, I'm truly not okay with it.

I love Benjamin to death but still hate the Down syndrome. I'm better about many things, but if I could wish it away, I'd do it in a heartbeat.

Just take it one day at a time. There is NO set time for acceptance. What I have learned is that it comes in waves. And each time I have a good cry/fit about it (I honestly don't remember the last time), the stronger I come out on the other side.

(((hugs))) Most of us have been there. It's normal. It sucks, but it's normal.

_________________

Angela
Wife to Matthew
Mom to three wonderful sons:
Andrew James--3/24/06
Benjamin Matthew--4/24/08 DS--VSD & ASD repaired 10/3/08, intestinal obstruction repaired 1/13/09, hypospadias & ventral hernia repaired 8/21/09
Thomas Alexander--3/25/10

www.theamicks-angela.blogspot.com

lissad63 · Posted: August 22 2011, 8:49 PM Post subject:

my niece is 3 mo. younger than my daughter abby. she caught up to abby by the time she was 7 mo. that was rough... IS rough. hate it.

_________________
http://babypelly.livejournal.com

burnsun · Posted: August 23 2011, 11:41 AM Post subject:

Having the six month blues with little Emma this month too!..... My new strategy...... pretend she is three months..... and live in my own little La La world! Rolling Eyes

for a little while longer and see how that goes and hope all the rest of the world joins me!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

Momtoseven · Posted: August 23 2011, 4:11 PM Post subject:

{{{{HUGE HUGS TO YOU FROM PA}}}

Mark has a friend right here in the neighborhood who also has ds and is one month younger than Mark and he is way ahead of Mark in almost every way. We love him and his mom dearly, but it can be depressing when your child with ds is behind other children who also have ds Sad

.

I dread when people ask Mark's age because I know their reaction will be surprise because of his size and abilities.

_________________
Maureen - Mom to Daniel(24), Brandon(22), Jordan(16), Thomas(14), Carrie(10), Samuel(7) and Mark (4)
https://www.carepages.com/carepages/MarkEdwardC32708

MommyAngela · Posted: August 23 2011, 4:25 PM Post subject:

I *so* agree, Maureen! It's the hardest for me when Benjamin falls behind other kids w DS who are the same age or younger. I follow several blogs where 3-yr old boys w DS have a huge vocabulary (vocal words and signs), and we're still waiting on any communication. Sigh...

_________________

Angela
Wife to Matthew
Mom to three wonderful sons:
Andrew James--3/24/06
Benjamin Matthew--4/24/08 DS--VSD & ASD repaired 10/3/08, intestinal obstruction repaired 1/13/09, hypospadias & ventral hernia repaired 8/21/09
Thomas Alexander--3/25/10

www.theamicks-angela.blogspot.com