I'm posting here, because Angela's behavioral issues are far more extreme than typical kids with DS. Some days, ok many days, she is just downright horrible. >edited to add: I just looked at my post again. It is a BOOK! If you make it to the end, kudos to you!)

Towards the end of the school year, things were really really really bad. I was having to pick her up from school nearly every day. The good days were few and far between. Still, her teacher was Sooooooo good about not feeling the need to tell me EVERY SINGLE THING that happened. Some days she ONLY told me the good stuff. She knew I was hitting the wall.

Then we started a new med. combination, which took about 3 weeks to kick in. (school didn't get to see the benefit of it. ) and things were looking GREAT! Wow! She was so much fun to be around again! She was awesome! Her normal happy go lucky self that I could take anywhere again. She was happy, we were happy. Life was good again, and I was very excited for 4th grade to roll around so she could prove just how amazing she is when all the other behavior crap isn't in her way.

And then something happened.

One day I had her in target, picking up stuff we NEEDED on my way drop her off at camp. It was horrible...she went through the store hollering every swear word she knows (at 10, she knows them all) Then she started the "flop and drop" on our way to the check put. OMG..I wanted to just make a run for the door, cuz we NEEDED the stuff in the cart.

We get to the checkout, there is one guy ahead of us with just a couple of things. Picture this tiny girl hollering BS, BS BS, and if that was't bad enough, then she started grabbing things off those impulse buy shelves and throwing them at the guy. That's when the register ran out of paper. I looked around...every other register had a line, and there were several people behind us. Oh GAWD how I wanted to leave. SHE NEEDED THAT DARNED SLEEPING BAG!

It wasn't long before I was physically restraining her. One leg wrapped around hers because she was kicking things and me, both arms wrapped around her to stop her from throwing. Me trying not to make eye contact with anyone in the store, and not saying a word. Trying to pretend I was on another planet smelling flowers or something.

Finally it was our turn. The young woman at the register said, "How are you guys today?"

What??? She couldn't hear or see how we're doing today?

So she quick rings us up, and says, "Bye! Have a nice day!"

Yep...I will...as soon as I drop this child off at CAMP!!!!! (well, I wasn't really thinking child at the time. I was really thinking posessed monster.)

And why did this all happen? Why you ask? Because late the night before, I picked her up at her dad's where she'd been for 5 days, and HE decided HE doesn't believe in medication, so he didn't give it to her! Only he didn't tell me that.....at least not until we got out of target and back to the truck and I called him to verify my suspicions!!! OMG!!!!! Oh did I rip him a new one for THAT! Not only did she suddenly stop taking a medication that you're supposed to take WEEKS to wean off of, but now she was totally unmedicated, something that is NOT GOOD for anyone, her OR us!

So we get to camp. I warn them about the med. issue and debate about weather or not I should even leave her. On her check in forms it says we're supposed to meet with the camp director (nobody ELSE has to meet with the camp director!) I explain the situation to him, and he assures me they'll be able to handle whatever comes up. I was hopeful....even if it only lasted for a couple of days. I needed those couple of days.

The next day camp called. Things were bad, but they wanted me to know they were willing to stick it out a couple more days. I happend to talk to her county social worker that day, and mentioned what happened. She told me she was filing a report against her dad for medical neglect.

The next day things were GREAT! HOORAY! Could it be the meds are kicking in again. (I would be shocked, since it takes them 3-4 weeks to start under normal circumstances.)

The following day, when I was 2 hours the OTHER direction (camp is 2 hours west, and I was 2 hours south, putting me 4 hours away.) they called. Come get her. Someone got hurt. They already had her stuff packed.

On my way to get her I called her dad and screamed bloody murder at him. I told him I had just paid $1000 for her to go to camp, and it was NON REFUNDABLE, and it was HIS FAULT she got kicked out, so COME GET HER. Let HIM deal with the monster she becomes when off medication!

Three days later he did. He'd already had a visit from the county about the meds and was very careful to listen to the medication directions this time. (yeah, she'd been on them for 2 months and he's just now figuring this out?)

Her second day with him, at 6:30 in the morning, he left a message on my voicemail. "Just so you know, you HAVE to supervise her at ALL TIMES! You CANNOT let her out of your sight FOR A SECOND!" Then went on to explain the very minor issue (she ate crayons to see if he'd get mad) and all I could do was laugh, and say IT"S ABOUT TIME YOU FIGURED THIS OUT!

It's been 2 weeks since she got kicked out of camp. The meds are starting to kick in again THANK GOD. She's not back to 100% yet, but we're getting there.

But oh man, these behaviors are driving me crazy. I have no clue how to handle them, and both Dean and I are getting frustrated and cranky. It doesn't help that Dean has never had a little kid in the house more than couple days at a time, much less one who is so difficult.

Last weekend while Angela was with her dad, Dean and I went camping with his family. A much needed break. We got to visit my parents while we were in the area (they live 4 hours away) and have a really nice talk.

And then my dad said it. I know it's true, but to hear it from someone else really hurts.

He said, "You know, when we had the family reunion a few weeks ago, it was the first time the rest of the family has gotten to see first hand what you're dealing with. Until now, we've only heard the stories. You have your hands full honey, and I don't know how you do it. You just keep going and going and going, and chasing and chasing and chasing, and you never get a break. Nobody helps you. Not even Dean helps you. (Dean has even less of a clue how to deal with this junk than I do.) it's just you. I watched you hide out in the cabin rather than have to have Eagle eyes at the docks. I watched you worry every time she was out of sight for a fraction of a second. I watched you miss out on a lot of the family activities because her behavior escalated to dangerous levels. I am watching you run yourself into the ground."

What do you say to that? I can't get HELP right now! She qualifies for everything under the sun, but with the current funding she has, I can't get outside help. She'll be on this grant until at least March, if not longer. Thank GOD her meds are starting to kick in again. Please please please pray that she gets back to where she was before her dad stopped giving them to her. HOWEVER, we've had to stop giving her the ADHD meds because she was having adverse side effects from it. This child is so incredibly hyperactive.....I can't even explain it....and for her, hyperactive leads to trouble pretty fast.

What do I DO?????

Hmmmm are you sure you don't have my Dayton on your hands?


Our life is so screwed up with him right now..we can't seem to find a balance..

School starts in 3 weeks.



Hang in there!!! We have to be strong they are our angels:)

Three weeks? Your school starts in THREE WEEKS? I want to move! Ours doesn't start until September 5th!

I should say though, that for the month of July she has summer school 3 hours in the morning. 4 hours if you count bus time. (leaves at 7:30 am back at 11:30) But she leaves so darned early, that by the time I get my butt moving she's due to arrive home.....sigh.....

7 more weeks till school starts.

Hi Leah,

So sorry to here about all of this. I was having a rough week myself last week (not near as rough as you have been having it!) sometimes I really get angry at this diagnosis. Not the DS, just all of the crap that comes with it that is so hard to understand. I think you know what I mean. Forgive me if I am going to sound very uninformed here but -- what are the medications treating? Do they give them to her to treat a specific set of symptoms or is it more of a general medication for the hyperactivity? Have they ever given you an answer for what causes her to be 'combative'? There are so many new 'medical acronyms' out there and I think all kids (and adults) can find at least 2 or 3 things in their descriptions that fit their behavior! I know you were looking into her blood sugar issues, but have you ever gotten a good explanation for "why does she act this way?" So many of the behaviors that Angela has are very familiar to things that Allison does that I'm dying to know if there is one thing that the doctors can say "this is why she reacts this way." Or am I wishfully thinking?

Also, sorry your ex is such a butthead! Since he is in a way causing Angela to be a danger to herself and others by neglecting to give her the medication she needs, can he have his visitation rights taken away? I don't know a lot about custody things. I know you relish the break you get when he has her, but I bet you also dread it because of knowing what you have to deal with afterwards! I feel so bad for you, because it does really suck!! You know what your father said - I wish everyone could see it that way - Greg and I have talked many times about how no one can really understand what it is like. They don't get why we don't go out to restaurants, why we can't take our eyes off of her, why we can't relax because out in public we are always chasing her around, why we rarely go to church anymore because we get nothing out of it because one of us always has to take her out and spends most of the mass out of the church! It is so frustrating!

You are in my thoughts! I think tequila is in order!

Love ya!

Angela takes Prozac, Adderall, and Chlonidine at night so we can all get some sleep!

I didn't want to try prozac, I really wanted to try Risperadal, but our ped was not supportive of that. The prozac seems to be working ok. Adderall does NOT work well with the prozac though! She was having symptoms similar to Tardive Disconesia. A couple of times I have not given it to her for a couple days, no symptoms...then gave it again one day to check...sure enough. It came back. That's the end of Aderall for her!

Angela spent this entire past school year having assessmetnd done. Nobody will says she qualifies under ASD's, but that she has "lots of autistic tendancies". We're supposed to see an autism specialist in November to straighten this out once and for all. In the meantime, I'm doing lots of videotaping.

Leah - I'm not sure what I want to say. But I was speaking to another mother today, whose son is 4, and she was saying to me that she's never met another child with DS with behaviours like his. She believes he has ADHD but no-one will take her seriously. She struggles so much with her little man too, and, as a single parent, finds she is constatnly having to watch him. And she doesn't see a way forward.

Don't know why I'm telling you that. I know you know you're not alone, but that doesn't help you knowing others are in a similar position!

I guess all I want to offer you is support and prayers. You will get through it, and once the meds kick in, it will improve. Angela brings something unique to your life - she is a wonderful kid. But wonderful and easy don't go hand in hand all the time.

All the best
x

Leah,
I have tears in my eyes. I am so sorry that you and Angela have to go through this. I'm sure it's not easy on either of you. I'm not even sure what to say.. I want to say a lot- but I'll leave it at- I'm sorry and I hope you both get a much needed break.

Leah, I'm so sorry! I don't have any advice, because we're not there *yet* but know that I'm praying for you and for Angela to get back to where she was. Do you think the disruptance of summer is also affecting her on top of everything else? I have heard how our kids crave routine like no other kid, and summer can put them behind even more wherever they're struggling...let alone not getting meds that they need!! I would be so upset about that!!

*Hugs*

Leah I'm so sorry for everything your going through. Your always so helpful and full of information when any of us need it. I have no answers but you and Angela are for sure in our Prayers.