Saturday, March 26, 2011

Sensory issues kinda suck,grandbabies staying with you,does not ...


Well it's not like it came out of left field and all.For the last 6 months there have been plenty of red flags.But,even with that said,I am throwing a tad bit of a pity party today.

Cried at Joe's Basketball game this morning.Not just like my eyes misted a bit.Nope,real big,run down your cheeks,tears.In a gymnasium full of people.It wasn't like we didn't have plenty of eyes on us to begin with.The whole bunch of us.We are quite the crew and hard to miss when we all enter a room.You can see people glance over the line of us.Mom,dad,ALL the kids.Wide age range.Tiny Charlotte,"Now who does that one belong to?",I can almost hear them saying.Significant others,one of which is 6'7" and then there is Miss Zoey ... probably most see me and connect the "advanced maternal age" thing and it all comes together.Anyway...

The gym was crazy.Loud and crazy and Zoey freaked.Like signed "potty" 10 times in a row cuz it's her escape clause out of anywhere.Signed "loud" frantically and proceeded to lose it till someone stepped out with her.That is when I lost it.I know,I know,most are going to say "alot of "our" kids have sensory issues.I get that BUT "alot of "our" kids" don't.Was kinda hoping that we could missed this little detour but like I said,those red flags have been waving and now I suppose we just deal.What option do we have?


The bummer is,Zoey really likes people and activities and she adores church and the store and things along those lines,however,when we get to restaurants and loud venues,outdoors or indoors,even her birthday party on home turf,game over.The look on her face says it all.We lose her smile.Her disposition totally changes and for me it brings me back,in this small way,to seizure days.When I looked in her eyes and it wasn't her.That is kinda how it goes down.And quite frankly,I hate it.A part of me does spew out,enough already.Zoey has her plate plenty full,in my opinion and I am certain people get tired of me saying:Down syndrome,major heart defect,stroke and resulting CP diagnosis,seizure disorder and leukemia.Sensory issues should be minor stuff but ticks me off just a bit.Honestly does.Well,that is my pity party for now.Oh, all except the new teeth grinding she is doing lately ... and I know,I know"alot of "our" kids do that."Doesn't make me feel better though.Really doesn't.Do we have to add crap teeth to the equation.Well,she is missing one in front anyway,so what's the big deal.Geez.


Okay,here's where happy,optimistic Heather takes over.Charlotte and her mommy are here for a few months while Danny finishes school,but he will be up every weekend.Pure Joy for us but Danny is not feeling the joy part, as he asked,"Will Charlotte still remember me when I am gone 5 days of the week?"Poor guy.You can see the sadness in his eyes when he talks about leaving his girls.


Watching Charlotte run around and play and climb and explore,is so much fun.We do have to baby proof cabinets and outlets,which has been totally foreign to us with Zoey Grace but I have the plugs in the outlets already because. a little someone and a set of keys,is not a good combo.And,the magic that goes on,between Zoey and Charlotte,is enough to make any girl forget her woes.



Hey,thanks for hanging around for the pity party.Been awhile since I threw one.Felt sorta cleansing.


Sweet Pea's Mommy said...

You know...I don't think "alot of our kids have xxx" helps any of us when we hear it. It sucks that ANY of our kids have to deal with things that make their life harder. I'm sorry that you have found another one of those things.

I'm thrilled that you get to be cheered up by such a sweet and adorable granddaughter! It was great meeting her last week! I know why you love her and her mommy so much!

Rochelle said...

So sorry. Although looking at Zoey and Charlotte together I know your pity party is going to be short lived! =)
Hugs friend!

Scrappy quilter said...

Ya know what...every girl needs a pity party every now and then. I've had them, will probably have more and that's okay. It's okay with you too. Just know that with our M the sensory problems left as he got older and he no longer grinds his teeth. Enjoy the time with your granddaughter. The two of them, little Miss Zoey and her are just two of the sweet people on this earth. I love seeing pictures of them together. Hugs

Cammie Heflin said...

What's ironic about this post to me is that I have been planning on posting about Cooper's bday party today. I have just a couple of pix of him and Jake due to the fact that Addy was completely freaking out. Way too loud, too many people, etc. We even had to leave before the boys really wanted to because Addy had simply had enough. The only good thing I could get from this was the fact that her brothers were so understanding and told their friends that we needed to leave because Addy was getting upset. Out of five boys, only one complained. Not a surprise which one complained, he's quite a self-centered little brat that I could easily go the rest of my days never having him around. Cooper relates the most since he continues to have significant sensory "issues". It sucks, I agree but there are ways to try to prevent melt downs before they happen, will share more info it does help.

Googsmom said...

Love Grandbabies!!!

The teeth griding: ughhh. Nip it in the bud Momma at least try your hardest. We know what happens, just ask The Brookster. LOL

Now lets talk sensary issues. I say foooie!! Brook, like Zoey, loved stores, people and the like but all of a sudden about 2 yrs old
something went whacky. The kid would scream bloody murder when a bell went off or someone yelled at a volleyball game, this kid would not even touch the ground, etc... I was not going to deal w/ this well. LOL I took her camping and said to her... Brook, if you want to go play with the kids, get off the chair and walk on the dirt, twigs, rocks etc... and get there yourself!! Momma will not do it anymore. Poof, there she went! Noises, yep fixed that too LOL. I took her to every noisy place I could think of. Arcades, highschool football games, basketball games, go carts, etc.. anything I could think of. That too worked.

I know your not as mean as me *wink* but I thought i'd throw that out there for ya. Don't give up Momma. It may take a bit of time but who knows, she could very well grow out of it.

All my love,

Kristin said...

Nothin' wrong with a little pity party. We have to let it all out, to regroup, so we can enjoy what's next - lovin' on family!

Becca said...

Ohhhh, first of all, I just have to say that ALL of those photos are JUST GORGEOUS!!!! Sooooo beautiful, both Zoey and Charlotte. Loved those.

Second, you know I sympathize... Sorry. :-( :-( :-( :-( We're going to try Sammi with the theater again next weekend, but this time it's a musical, so it may go down better.

Anonymous said...

A pity party? As a mom, you're allowed to have one now and then... Sorry about you crying, Heather, and hugs to you and Zoey...
(Anna in NY)

Erin B said...

Your pitty party was the only party I've been to in a while so a pitty party is better than no party at all :) I'm sure it is so very tough to have a sweet little girl have such a difficult time when things get loud. With older kids loud activities are just part of the agenda.
P.S. loved the pictures of Zoey and Charlotte. Little girls just melt my heart!!

tonia said...

Although my situation is completly different to you and Zoey I can see where your coming from about being an older mum. I have 2 grown children 30 and 23 then a little one who is 7 and I am 50.People think that they can make rude comments about your age and say things like "oh I thought you were her grandmother" and if she misbehaves people look at you with pity because they think your too old to cope.Why do people think they have the right to act superior over other people and their lives. Zoey is a beautiful child and always manages to mke me smile. The photos of her with her glasses on just made my heart melt.Your doing a great job and have a beautiful family !

stephanie said...

Pity parties, isn't that the theme this week??

Anyway that does suck.I had a taste of that with Andrew. He was really sensitive to sounds for about two or three years. We really had to think about where we could and could not go. birthday parties, YIKES!! Even in our own home the TV was a problem. he would panic if we were somewhere and it became to much for him and just run to get away. I have never seen a child cry and become so panic stricken as Andrew. It would break my heart.

Kelli said...

I think sometimes the only way you CAN feel better is to have a pity party!

I love the pictures of the 2 girls precious! :)

my family said...

Thank you so much for leaving a comment, I check your blog occasionally b/c I know many of the moms I follow keep up with you and Miss Z, she is such a doll. If you would like me to send you some beads too send me your address to and I will send some to her.

Lacey said...

You deserve a little pity party once and a while. After we were talking about Zoey's sensory issues a couple weeks ago, I wondered if Arina has that problem. She hates noises, and if there are a lot of people in a small room, she cries. Maybe it is a Down syndrome thing, I tend to believe Downs kids don't have autism too, that it is just something that comes with Down syndrome. But it doesn't make it any easier!

colleen said...

Hmmmm, You don't look like you are of advanced maternal age to me.... I can always remember feeling the way you spoke of when my family went anywhere as a group (7 kids and 2 parents). People couldn't help but stare and try to figure out who was who, and I for one hated the attention.
Re: sensory issues I can relate as my oldest was very, very crowd/group averse. With time and respect, he grew out of it, but I always had to be aware of what I could and couldn't get away with, or he would let me know rather loudly. There were times I felt it would never go away! Zoey is so lucky to have such a sensitive advocate in her mom but this certainly doesn't make your life any easier. Am thinking of you ....and hoping that this too shall pass.

kathleen said...

Your family, everyone in it, is perfect. You know that! Rainy days are good days for pitty parties though. Glad it was short.

Peter Olson said...

Sarah had her first child, Isaac, when she was in her nineties. And you are just a youngster compared to her. Ha! Ha!
I don't know about pity parties, I've tried to throw a few of them myself and no one ever wants to come to them. :-)
Cheer up! You have been blessed with a beautiful family. :-)
It's OK to cry too!
Life ~ got to love it! :-)

Shelly Turpin said...

hugs my friend from me, mama to Bella who cries whenever someone laughs

Mama Mason-Mann said...

The pictures are amazing! She is so beautiful. Hopefully the sensory issues will get better as she gets older. It still doesn't make it any easier, knowing that what she has to deal with now. Enjoy your granddaughter!

Anonymous said...

Hi Heather,
So glad you have your daughter and grandaughter with you for awhile. So much fun! And the pictures are wonderful. What a special time this will be for Zoey too! About the sensory issues - we had similar issues with our son Scotty, but what we found really helped was always having ear plugs with us. We use the wax kind that fit anyone and after using them for a short time, Scotty learned to ask for them when things got too loud or when he thought things were going to get too loud. We often ended up on the top or back row of events, but we got to stay and enjoy them, and Scotty got to enjoy them that way too. So that would be my suggestion: ear plugs, the wax kind ("Mack's Pillow Soft Earplugs").
Sending love,
Logan UT

Anonymous said...

Well, I have read through all the comments and a couple of things rang out in many of them. (1) pity parties are okay and (2) sensory issues seem to be a common theme with everyone. I do not know or have knowledge of senory issues but -- put me in the group that says "pity parties" are okay!
Sorry for you and Miss Zoey, hopefully she will conquer this mountain in the same way she has surged through all other obstacles.

- how wonderful that everyone was able to attend Joe's basketball game, I'm sure it was great for him. Yep, I can see everyone trying to figure out that Needham family sitting in the bleachers, especially with little Charlotte in the group! love it!

Just think if we lived closer - there would be a grandmother & aunt added to the mix and probaby Poppa too! We would have a entire section taken!

Love the photos of Miss "Z" and Charlotte. They will have so much fun. And, Danny - I'm sure Charlotte will not forget her daddy never,ever..

Love & hugs to everyone
Aunt Bluebelle

The VW's said...

Well, thank you for helping me to not feel quite so guilty about the pity parties that I've been throwing for myself! :) All this just to say: that I get where you are coming from, I feel for you, and I wish that I could change all of this for you and Zoey....and me and Gavin too!

Sometimes it's just so overwhelming.....(basketball games with Gavin are miserable! And, the teeth grinding...don't even get me started on what it does to my nerves!), I guess our special kiddos get very overwhelmed like we do, and they are just trying to tell us! Some noises and activities are just too much for them, and they lose it just like we tend to do when our brains are faced with way too much! certainly stinks!

Too bad we can't get together and have a calm and quiet time with our Ds cuties! I bet they would love it and I know that I could definitely use some time with someone who truly understands! Love and Hugs to you friend!

Anna said...

Heather, Next time let me know in advance so I can come to the party. Ill bring the cake, chocolate of course. And Im sure we can have balloons and streamers. You name it. Keep feeling it. When I start cramming and not letting myself just feel "what is" its the worst. This is what I felt last week when I talked to the Dr about little Gs dancing in circles and she named it. I really dont want another thing to add to her list. ;) I hope it feels better to know that "I get it." Take baby steps my friend. Im going to pray that with time this will be better.

Shawn said...

My son had those same issues. My husband comes from a huge family and I am an only child. I would have to leave his families activities after an hour or so because the chaos would get to Ben. Of course, my mom loved it because she got more time with him during family visits but it has turned around. He hit his teens and is now a social butterfly and thrives at being the center of all that attention. Give her time and don't give up, I bet money that she will be able to overcome those issues.

Bethany said...

You have every right to have a good old fashioned pity party - and look how many guests you have! :) Its often not the "big things" that push you to the edge, it is the seemingly "small" things that do it. It totally stinks for Miss Zoey and for you that for now she can not process noisy places. I am almost 30 and can not tolerate noisy places for a whole different reason (they literally trigger a process that makes me seriously ill), so I am familiar with the process of trying to judge how much is too much and wanting to be social but at what cost. Many of my students outgrew this sensory aversion with time and patient gradual exposure to events that were just a little louder each time they mastered one. The teeth grinding is indeed common among all children with special needs, but that doesn't make it any less crappy. Sometimes redirecting to objects to chew on can help with the grinding or simply gently taking her jaws in your hand so the grinding stops and saying "no grinding teeth" can work with time.
Zoey is a fighter and will overcome these too, but I agree it flat out sucks that she even has to.
Charlotte is precious and will be good balm for the soul, especially watching how she and Zoey interact. They have a soul sister connection that is beautiful.

Anonymous said...

forgot to mention in my "long" comment yesterday - the last 2 photos say it all - Auntie "Z" with her arm around Charlotte and then Charlotte looks like she is whispering something to Aunt Zoey! Pure joy!

Take care

Aunt Bluebelle

thepiersolfamily said...

Aww Heather, thinking of you. Sorry Zoey has something else on her plate. Totally not fair. And yes, sometimes there's just no solace in the fact that others are in a similar situation...sometimes that's just all the more sad. Thinking of you with those too little sweethearts and the rest of your family around. Those two little buddies-darling pics. You must be loving having your daughter and granddaughter there. Love and miss you!! Laura

Melissa said...

Pity parties are good, espeically if they make you feel better!

And I don't like it when people say "lots of kids with Ds...". It always makes me feel like I should be ok with whatever it is just because it is 'common.

I'm glad you have your sweet granddaughter to brighten your days though!