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teary day for me


 
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Ava
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PostPosted: August 07 2010, 2:28 PM    Post subject:
teary day for me
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Crying or Very sad I am so sad today. Today it seems I just can't stop yelling at my son, and I am so discouraged. Daniel is 5 and will be 6 in November and he is so very stubborn. I can't seem to get him to do anything that he doesn't want to do. We are working STILL on potty training. He will pee and poop on the toilet, but only if we bring him in there constantly. He won't go in on his own, but them some days he does, and others he doesn't. I tried underwear and it works great some days and some days it doesn't. He will pee or poop right in the underwear and then come and get me.

Secondly, haircuts. You would think, we were killing him. Taking him for a haircut has turned into a battle. Restraining him to have a haircut for 20 min. is not my idea of any kind of fun.
He is not docile and isn't violent, but gets himself ALL worked up, if we are in a situation like that. He will fight me, and do the dead weight thing. Its physically draining.

I need to get him an eye check-up and have the dentist look at his teeth. But I dread it. I know it will be nothing short of a complete battle with me crying and exhausted.

Is this normal for Ds? He is very very social, and loves people and is friendly, but I struggle to find ways to get him to do stuff. LOL. He currently is going to ESY at the school from 9-12 . He loves the bus and is learning more vocabulary which makes it easier.

Some days ....I just don't feel like a very good mom. I am sad Sad

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PostPosted: August 07 2010, 3:10 PM    Post subject:
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I could have written this post. Natalie s 4 and I just started potty training her last month. She is doing the EXACT same things as Daniel and I don't see it really changing much anytime soon. She had her first official haircut today (one not by me in the tub haha) and she was a MESS. Screamed like I was ripping a limb off. I know that some of her reactions link to sensory issues she has but man oh man I feel like a crappy mom some days. I am thinking this post didn't help you much but I can tell you that you are definitely NOT alone. Wink

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PostPosted: August 07 2010, 3:11 PM    Post subject:
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Huge huge hugs. You are a good mom. A very good mom. YOur human and it's ok to have bad days. No one said it was easy being a mom to any child.

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Ava
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PostPosted: August 07 2010, 3:17 PM    Post subject:
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Lori and Christine,

thanks so much for the responses. It is so nice to know that I am not the only one with a "screaming mess" trying to get a haircut. I guess some of the similarities between Ds children. The sensory issues is a major part of some of Daniel's quirks. Big Time. I just get mad at myself when I think to myself, what do I have to do, drug him to get a hair cut. Force feed him to eat something new. Jump up and Down and yell to get him to "come here" uggggg.... Sad

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PostPosted: August 07 2010, 5:22 PM    Post subject:
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I also felt the same way with tarek. We reach a point that we cudn't take him to hair salons anymore for all the screaming. I even watched Youtube videos to learn to cut his hair...Imagine the results LOL!
Then we discovered he has SENSORY PROCESING DISORDER and with therapy now the hair issues are much better. We did BRUSHING/JOINT COMPRESSION TECHNIQUE, and take him to a fun place to cut his hair Cookie Cuters.

Hope help!
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PostPosted: August 07 2010, 5:32 PM    Post subject:
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When Talitha is 'on side' with what we are doing everything goes great, but if she isn't it is a big fight. Fortunately I have only trimmed her hair and done that while she was watching tv so apart from turning her head to try and see what I was doing there wasn't any issues.

Our issues are getting into the car and it is all about her wanting to do it herself except she can't open the gate or open the car door or put her own seatbelt on. If I can help her without her realising then it goes ok but otherwise it is ia huge battle.

Same goes with getting out of the car and I often end up carrying her kicking and screaming into the house. I can't walk away from her because she can just walk out our driveway and onto the road. We used to have fights over bath time but for reasons unknown she has decided that if there are bubbles in the bath she will get in so that solved that. Working on getting her out when I want her out now.

Potty training is just not happening at the moment. We tried last summer but no deal so I am going to try again next summer (we are still in winter here). She knows about pooing in the toilet but still poos in her nappy and then signs "toilet".

I am working on finding out why some of these things are such a hassle for her. Much is about her wanting to do things herself and have control over a situation which isn't always possible or appropriate.

There are times when I yell, times when I cry and times when I do both and walk away. Then there are times we work things out. So you are not alone.

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Ava
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PostPosted: August 07 2010, 6:47 PM    Post subject:
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Thats funny, because that is exactly how I describe Danny. If we are doing what he wants, when he wants , we have a great time. If not, its a big fight.

I looked into sensory processing disorder, and I found this checklist, so to speak. I am going over some of it, because I do think some of is is sensory issues.
But I also think he wants , what he wants, when he wants it. Sometimes, what he wants is not appropriate or is not good for him.

I lost the food battle long ago. I can't get him to eat any meat at all, unless I trick him.

http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

I find that some days, I am too tired to fight with him, and I pick my battles. Other days I try to "make" him do what I want him too, and those are the days that are hard. sigh. Sad

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PostPosted: August 07 2010, 7:51 PM    Post subject:
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Ava, we are right there with you in many ways. I think it has alot to do with age. No longer toddlers....but not exactly fully independent kids just yet. My Danny can be as stubborn as the day is long and can turn a nice family afternoon into a nightmare. I try and reason with him as much as I can....but my patience wears thin. PM me and we can chat in more detail if you like. Our Dannys seem to have alot in common besides their names and their extreme cuteness!! Hang in there my friend, you arent alone.

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PostPosted: August 07 2010, 9:18 PM    Post subject:
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I had a day like that today, too.... at a family birthday party and Grant would run away from me, etc, etc... He's 4, and it's hard the other kids that are his age do what they're supposed to! I feel like everybody wonders what I'm doing wrong that makes Grant misbehave Sad Several other discussions on here about behavior let me know I'm not alone, but it's still hard. Just wanted you to know you're not alone, either Smile

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PostPosted: August 07 2010, 10:02 PM    Post subject:
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Oh Ava, we all understand! Gunnar is a stubborn little fella too and I have to pick and choose our battles too. The haircut drama resonates with me, as well. How funny that there are such similarities with our kids. Like Lisa said, you are not alone.
With the haircuts we decided (after holding and fighting and the screaming) that it was not worth it. There are some things that we have to "demand" and others that we don't so I decided to break it down into tiny pieces. I knew that Gunnar wasn't acting crazy on purpose so I decided to take the drama and craziness out of it. I asked a local hairdresser if we could visit twice a week...first time to sit in chair and just explore. Next visit was to comb and wet hair and put a cape on him. Next visit was to trim only the bangs. Next visit was to trim as much as we could until he started getting uncomfortable. After each visit the hairdresser gave him a tiny pack of gummy bears and hugged him. It took about 6 visits until we got a complete haircut...and by then it was time to start all over again!! But, it worked. The fear left and the hyper sensitivity was toned down.
I figure there are many things that are out of our control but there are lots of things that we can just slow down and break down into much easier little pieces and our children can learn to handle it.
But, there are lots of days that I wish things were just doggone easier!! So, hang in there - you are surrounded by friends who understand your good days and your bad days.
Hugs, Lauri

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PostPosted: August 07 2010, 10:20 PM    Post subject:
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I'm smiling here. Smile

You have also described my Melly. I do believe it has to do with sensory issues.

Hair cuts. They are often a tough time. I usually take someone with me. One of us holds her and one of us sings to her. LOL! Do we look ridiculous? Yep! Does it help? Sometimes.
When she was younger, I just held her and let her cry. I always had the sweetest most patient girls cut her hair.( I have gone to the same place since Melissa was about two years old.) I would tell them that I was not looking for a PERFECT hair cut. I just wanted them to do the best they could considering the situation. I'm surprised they didn't close their salon when they saw us coming. LOL!

I finally found a place to take Melissa for dental appointment. It's a place that knows how to work with children and adults with Special needs. We give her a small dose of Diazepam before we leave for the dentist. ( It's about 20 minutes away. The dental assistant and Hygienist put her in a papoose . Melly doesn't like it. She complains but it's not an all out temper fit. The visits have gone a lot more smoothly than I had expected.

I have to hide meat into her food, too. Smile I put it in the food processor, then I add it to her spaghetti sauce, gluten free mac & cheese, rice etc. I do the same with her vegetables. Her food usually looks like it is full of confetti.

He'll get there with the potty training. If it makes you feel any better, I think he's off to a good start. Do you think a reward system will help keep him consistent? With my oldest daughter ( Non DS) I finally broke down and bribed her. She was weeks away from her third birthday and flat out refused to use the toilet. She would tell me that she wanted to pee pee in her diaper like the baby. Grrrr. SmileI bought a BIG tub of gumdrops and put them on the kitchen counter where she could see them. I told her that she will get some gumdrops after every time she pee peed or poopied on the potty. She was trained that day. ( Night time training was another story. ) Some people frown upon bribery, but what can I say... it worked. She's now twenty three and she STILL uses the toilet. LOL! Whatever works!

Some kids like putting stickers on a chart.

I think that with some kids with DS, this is normal behavior. People with older children with DS tell me that they DO grow out of it. Be patient, be consistent . It will be worth the effort. ( Even if it is exhausting in the mean time.)

Michelle
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PostPosted: August 07 2010, 11:44 PM    Post subject:
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We had a hard early summer. It was the same thing. Charlie is so stubborn, and he is heavy, and just hard to control.

Charlie is 4 1/2 and we are no where near being potty trained. It is the same thing as your son--he knows what to do, but unless we take him every 30 minutes...

Hair cuts are so hard for him, too. It is a sensory thing. We found using a clippers that attaches to a vaccum (like Flowbee or Robocut) helps us to cut his hair quickly at home and no hair falls on his face or neck, which to him is infuriating.

Anyway, a couple suggestions, but mostly, I've been there. Oh boy have I! So Hugs to you. I've literally had to spend the summer trying to reorient how I look at Charlie and how I am willing to live my life so I can feel okay about being his mom. Lots of adjustments, and they just keep coming with every new stage he reaches. I love that boy, though. With all my heart. I guess that is what makes us feel so badly about how things are going sometimes--we just want the best for our boys.

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PostPosted: August 08 2010, 3:03 AM    Post subject:
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Ava
This thread has sparked a lot of interest! If you take anything from it......YOU ARE NOT ALONE WITH THESE ISSUES!

I'm finding it a long sunmmer with Robert and on top of it all I'm riddled with guilt when I loose it!

We're taking rob to our local barber shop and orienting him......he'd his hair trimmed on thursday......he went mad......might try the candy rewards suggested earlier.

Toilet training.........thought we'd cracked that but Robert has soiled twice in the last week in night time pull ups!So this is still a work in progress!


I do understand how you feel........hang in there!

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Ava
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PostPosted: August 08 2010, 7:17 AM    Post subject:
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Ahhhh I feel so better knowing that I am not ALONE. It makes it much more bearable to come to a site where other parents are going through what you are going through.

I might try that trick of going to the salon a few times to see just a little at a time , how he might handle things a little at a time.

I just spoke to the eye doctor yesterday, and we are going to give it a shot and see how much he can handle.

What I find hard is that when people are "looking" ...I get so embarrassed by his behavior that it makes ME feel inadequate. Maybe thats the issue, I feel like such a "bad parent" because my child won't behave. Even though I know it is sensory. I feel so terrible when we leave, like there all talking about me when I am gone.

Shocked Shocked I feel like it happens more often when I am hormonal if you get my drift. LOL.

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PostPosted: August 08 2010, 9:45 AM    Post subject:
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Ava - sending you many, many hugs!! This too shall pass.... it just seems to take longer to pass with our children who have ds and can be very frustrating!! Take heart and know you are not alone!!!

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PostPosted: August 08 2010, 10:53 AM    Post subject:
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Nate has gotten so good with haircuts...I think the key for him is consistency....he has frequent cuts every 5-6 weeks and he has the same person cut his hair everytime....as possible. He is a little more difficult if he has someone new. His stylist uses little objects and such to district him and they play a video that Nate chooses. I held him in the begining on my lap but now he sits like a big boy in the chair. Do not give up. Bribe him if nessesary. For Nate food doesn't work so it can be the ability to pick out a video, go to the park after and swing on the swings, go ride his bike. Whatever it takes!

I used the 3 day method for training and it was relatively easy to "train" him but like your son sometimes Nate just goes on his own but I still keep a close eye on it and "toilet" him as needed. He has had few misses less than one a day. His issue is going number 2 and sitting on the toilet. Okay with the pottychair but I don't think they have a pottychair at school Crying or Very sad . I will keep trying to get him to sit in public bathrooms and see if I can get the anxiety to decrease over time. We had some regression on vacation a few weeks ago but yesterday we were gone all day at our State Fair and he was great. No misses!

I have used humor to break the stubborness and it works almost 100 percent of the time for Nate. I find when I get angry it just shuts him down and makes him more resistant. Similiar know reactions to kids on the spectrum.

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PostPosted: August 08 2010, 12:36 PM    Post subject:
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You have described my daughter!!!! Hannah is 5 and it's also a constant battle to get her to go potty. I've sorta of given up. I figure it's a control thing, she's wanting to assert her independence. She is in underwear, if she pees she pees! She knows what she's doing. If we're away from home she wants to go to every bathroom in each store. At home Hannah's younger sister age 3 will say, "come on Hannah lets go potty". NO PROBLEM what so ever....they go right in there and Hannah goes all by herself! Shocked

As far as haircuts...we're opposite. She loves to get her haircut!! At home when I touch her hair it's complete torture! Screaming, hitting ect. Maybe it is a touch of sensory issues but again more like in control!

As far as getting her to do something...She gives me the "no I can't do it" and crosses her arms and huffs and puffs. I count to 3 and she knows she's going to get punished whether it be timeout, not going outside, ect. I've learned to be very consistent...over and over again. Now I can say it works. She knows what to expect and rarely do I get to #3.

Good luck, you're not alone and it's comforting on difficult days to know there's someone else going through the same thing!

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PostPosted: August 19 2010, 12:38 AM    Post subject:
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Liam reacted to his first haircut like we were cutting off body parts.

So I tried doing little sneaks. His last haircut he got over a course of 3 days. He's in his high chair, eating, and I come up with the scissors. If he turns to watch, I do nothing till he's back to eating. If he starts to cry, I back off.

It was a little ragged, but it worked!
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PostPosted: August 19 2010, 1:06 PM    Post subject:
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Hi Ava,

I am right there with you. I don't know how many times I have cried in frustration.

You are a good mom. It's just that sometimes the bahaviors are so tough to deal with sometimes, we think it's because of our parenting skills that it continues.

I have people that tell me that they did "such and such" with their "typical" child and it worked, well it doesnt always work with our kids.

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PostPosted: August 19 2010, 11:58 PM    Post subject:
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Oh my goodness, you are not alone. Somedays, I have to walk away from Toru cause can't take it any more.
The other day, I just saying to myself, "how long am I going to have him as a baby???" Honestly, it is so draining....
Having said that, I had these moments with my older typical son too. We just need a break sometimes, I think.
(((((((((((((((((((((((HUGS))))))))))))))))))))))))

Jin

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PostPosted: August 20 2010, 1:01 PM    Post subject:
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HUGS AVA!!!! Smile

I have not really looked at the responses so I appologize in advance if I am repeating and/or asking something that has already been asked.

Sounds like your boy is asserting his independence! That is very age appropriate. Have you tried giving him options so he can see he is doing the choosing and communicating his needs/wants?

Potty training? I'd back off of that and not push or make a big deal on that, but that is just me. Potty training is SUCH a control issue....bodily functions are one of THE LAST things children can fully control....so if you set up to battle or make it a chore, they usually don't want to do it. Either set it aside for another time or change up your game Wink

As far as haircuts and dental visits....have you tried any form of social story or preparing for events like this with maybe a story, picture or Pre-visit? Sometimes that really helps!!!!

Good luck!!!

A.

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PostPosted: August 21 2010, 3:31 AM    Post subject:
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Hmmm, I haven't read the replies, but just thought I'd let you know how we cope with the haircut thing ... I wouldn't say its necessarily the best way of doing things, but it works for us, at the moment, while he's still small enough. Basically we have hair clippers at home. Andy holds Matt's arms down, I hold his head still, we put on a DVD for him to watch and I basically just shave all round! It's still a bit of a struggle and Matt definitely does not like it. But it takes 5-10 minutes tops, he looks OK at the end of it, he stays calm as he's in his own home with his DVD and I'm feeling less stressed too!

At the end of the day, for me, as long as he looks tidy, it's not so important that he has a dead smart haircut!

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PostPosted: August 23 2010, 4:58 PM    Post subject:
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Well, I could have written your post and put Josh's name in there. I haven't read other replies, but can almost bet that many of them answered that they, too, have a stubborn child with Down Syndrome.

As far as the bathroom... can you just set a schedule and remind yourself that he needs to be prompted? Eventually... this will all be a memory and the thousand or so times that we had to tell them/take them will be in the past. It's jut part of our day here... Josh gets up and I make him to (which he does on his own now BTW). Before lunch or before we go out anywhere, I make him go. Before dinner, he goes again. Before bed, I remind him again. His mood changes when he has to poop too... and I also know when he hasn't gone in a while so yep... I make him go and sit til he goes.

That said... it's not always just that I can say "josh, go to the bathroom please". Often, I have to use 1st/then (1st you go potty, then we go outside) for him to do anything I want him to do. But again, using 1st then is not all that big-a-deal if it makes life easier. So what if we have to bribe them some... it's better than cleaning an accident. Smile

1st/then has always worked for Josh. I know what he loves and use it to my benefit. Go outside, have popcorn, go to the playground, use scissors, take a bath... I can get him to do almost anything by using 1st/then. Yeah, I sometimes have to stand on my head, act all silly and try to make something sound REALLY REALLY fun... but that's all part of finding out what works and it's better than fighting constantly (BTDT)!

The haircut? We've been lucky that child protective services haven't been called... let's just put it that way!! But... the last time my husband cut it... he was totally fine. And just 2 weeks ago, he was with us when I had my older boy's cut so I had her try to cut his. He LOVED it and sat perfect the entire time!! I guess it just clicked with him. That phase was NO fun (and I can't say it's over after just 2 good haircuts)... but we get thru it. What choice do we have. Wink

I know it's hard... have you spoken to anyone on his 'team' at school? Perhaps they have ideas. Or google "behavior in DS" and get some ideas there. Or seek the advice of a behavioral therapist? I know Josh responds MUCH better to yes than no! If I tell him no... he folds his arms and digs his heels in. But if I start with something positive... ask for his help (he LOVES to help) and keep MY voice from being stern/angry/deep... we get a lot further.

Hang in there... it's not easy but the kisses at the end of the day are ALL worth it.

Susan & Josh

P.S. Remind me of my last sentence as needed!!!
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Shawn's mommy
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Joined: 09 Jul 2005


Last Visit: 01 Oct 2010
Posts: 697
Location: Seminole Florida

PostPosted: August 24 2010, 8:38 PM    Post subject:
Tough Days
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Ava, I am sorry you were having a rough day, Deep breath!.. Shawn is 8 years old and we were having a horrible day!!!! he decided he wasn't going to do his homework... so it goes from one thing to another.. I hate to tell you that Smile...
Shawn didn't potty train completely until he was 6 1/2 so just take a deep breath. Boys are so different. And we still have accidents sometimes. I have to remind him to go p-- or he can't go swimming because he will go in his pants for sure in the pool.. talk about being angry!!!!! He finally knows the routine he goes right in the bathroom and goes before he even asks to go swimming.

Haircuts we have had to work so hard at them. I wish people knew to start at a very young age. We started shawn at about 9 months old going just to put the electic razor near his ears. It took 6 months for him to get use to it. He won't put the cape on sometimes no big deal. We just put an old t-shirt on him.. gotta pick our battles. The secert is to find someone very patient!!!!

Sometimes I wish people just knew what we have to work through in our lives for our children. Your doing a great job. Heck I have a 15 year old that drives me to drink every day!!!! I swear he is the one with the special needs lol...

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Shawn's Mommy-Christy Jennifer 23 Reese 15 Shawn the big 8
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