So, I?m new to this board, but not really new to special needs. I have been looking around and reading for a bit, but haven't posted yet. Not sure why not, just haven't...
So a little background I suppose. My oldest DD is 10 will be 11 in just a few weeks. She was diagnosed at 5 with tourrettes, ADHD, anxiety, and OCD. I was devastated, at first not knowing what it all meant, how to cope and what all needed to be done. I felt soooo over whelmed. We had been noticing "tics" for a while, but our doc retired and every time we went into the practice they gave us a different person, we had to start over with explanations and test every time or they would simply say, no there is no problem. Luckily I was able to record a few of her "episodes" on my phone, she didn't do it constantly at first and it was only when stressed or totally relaxed like watching a move. She would sit with her hand blocking her face so much of the time and it broke my heart that she was self-conscious even in front of her own mommy. DD was diagnosed with Sensory Int Disorder about 1 1/2 ago. We currently have her in counseling bi-weekly and have been trying to work in the OT for quite some time now, but they keep telling us only one person is available in our area and she hasn't been able to fit us in yet.... No idea how that is going to go (if it ever gets started). My DD was the result of a sexual assault so most of her genetics are a total mystery and basically a guessing game. I still feel horrible. I am mommy and should be able to fix it or help or something. She had gotten really with drawn at school, kids were pushing her down kicking dirt on her, calling her names....I was at the school so often trying my best to get my hands on these little snots, I was successful with getting a hold of the parents of a particular child after stalking the pick up lines for days. My DD showed me the child and I watched for his parents, followed them to the DQ in our town and confronted them and their brat, creepy I suppose but I was desperate and the school wasn't being pro-active enough for me. The parents really laid into the kid and he left DD alone, thank goodness but where there is one there will be more.... We even had a "lecture" at her school trying to explain what Tourrettes is, what it does and why it happens. This helped her to understand as much as it did the other kids I think. So this past 2 years has been better for her at school, but she was still really struggling. Therapy has really helped her in this area; she is more relaxed, confident, and more importantly able to communicate her feelings. We still struggle academically, she really has a hard time concentrating, once she gets agitated the tics act up, she looses focus, and it's a bad cycle. But meds have helped greatly coupled with therapy... one day at a time.
My second DD is 9, she is doing well, her only problem is that she shares my heart condition, but is really over all a great "low maintenance" kid which unfortunately makes her feel a bit pushed aside or overlooked at times when DD #1 is having a particularly bad spell. But DD #2 is very outgoing and energetic so she demands her share of attention and receives it pretty easily most of the time ![]()
My DS #3 is my heart and soul!!!! He is my total angel, can't explain that bond buy my goodness I never thought it possible. I'm sure this sounds odd, parents aren't suppose to show favoritism, and I don't they all are loved beyond belief, but this little guy is just my sunshine! So happy and hyper lol. My DS was born with a cleft palate and a genetic disorder that is fairly easily controlled by his diet. He had surgery at 11 months to repair the cleft and it went really well. He is still followed by an entire team of specialists and will be until he is 18 or past puberty. Once puberty growthsperts stop he will have another surgery to break his jaws and re align the top and bottom, if this is something he wants to do, he will be old enough to decide by then. He has been diagnosed ADHD, but at the moment is only 4 and unless it begins interfering with his ability to function in school we are going to simply watch his diet, and make sure he stays challenged and active to maintain some order. DD #1 is on an ADHD med but only b/c it all ties together and triggers her other issues and vise versa. She has told us multiple times she does not like the way she feels with out her meds... opposite to most kids I suppose, but our doc is great and she is on low doses of everything for her age and weight, so she is not over medicated ![]()
I am PG with DS #4 and a bit nervous about all the possible issues. He is due just 3 days before DD #1 turns 11
But we already know that no matter what we can handle it and he will be loved, he will just join our motley crew and misfits? lol. My heart condition makes pregnancy pretty dangerous so this will be the last of the Mohicans. Sorry this was so incredibly long, wow thanks for reading if you made it this far. Pleased to meet you all.
Re: Newbie (wow, long sorry)
Thank you, the doc we saw in the beginning felt that they had affectively ruled out pretty much everything else. We are beginning to have further questions though and will do some deeper research into some of the issues you have mentioned. For DD many things like a carnival are soooo stressful for her, the crowds, noise, and lights drive her up a wall and she ends up so stressed and tics for days afterwards. Her meds control the tics for the most part, but over stimulation of her senses and anxiety cause her to tic despite the meds for quite a while until we are able to get her settled and calmed after a few days. Lack of sleep, stress, stimulations, crowds, anxiety, are all pretty big triggers for her. While she is a very smart girl she has difficulty functioning at all some days. There are days that she just stands in the shower for 15 or 20 minutes before she figures out what to do.... people laugh but it really concerns me, it should be an automatic, shampoo, rinse, condition, soap up, rinse both, dry off.... no some days she doesn't even remember to wash her hair. Benign nearly 11 and beginning to become "aware" of anatomy changes she does not want help or supervision during showers.... For her there are foods that simply send her over the moon, she will go with out eating for days if it is something she can't handle as far as for texture. We thought she had an eating disorder as a side effect to some of the meds, but once we figured out she didn't like the textures she eats like a champ now, a bit harder to make sure there is always something she will like. Clothing is very stressful for her, tags, ribs on socks, tongue in shoes, pockets on jeans, all stress her out and she has a hard time focusing on other things. The counselor said (for me) it would be like showing me a spider every 5 seconds all day or letting one run in my shirt would be the equivalent of the tag in her shirt. I felt so unbelievably guilty for not knowing the suffering and frustration she has been going through for so long, but she did not communicate these things with us, would just act out or look at us like we had two heads when we asked her to do/not to do something. I did not know the person that assaulted me, so this has been a bit of a struggle with her diagnosis, she does not know, I was engaged at the time so her "dad" just took it into stride and signed her b/c and we never looked back on it, even after we divorced, he is still her "dad". Counselor has told us that once she has adjusted well, we will have to address this to avoid further stress, anxiety, and denial down the road. We are both very uneasy, but understand the devastating effect if could have if she found out some other way. She is my little miracle baby though, they all are, I was not supposed to have children due to a heart condition that "couldn't support us both" and despite any circumstances or health issues, they are my angels. I love them and would love to know how to better help them and make their lives easier. Thanks again for the input and suggestions.