Very frustrated lately

iVillage Member
Registered: 04-11-2010
Very frustrated lately
3
Sat, 05-29-2010 - 11:09am

My dd was diangnosed with PDD-NOS a couple of months ago, she will be 6 in about a week. Though it has helped knowing, I still feel in limbo at times as I don't have a formal written diagnosis yet. Her ped psych wants to wait to do more testing next month when she's 6 since he has some tests geared toward 6 and up.

I have figured out some of her triggers and weaknesses, but they seem to evolve regularly. I feel like just when I get something figured out, another behavior rears it's ugly head and I don't know how to handle it. Her behavior problems go in spurts. Lilly is finishing up kindergarten and I don't know if she's getting burned out or what is going on, but she has been a battle and school and home lately. Things she used to love doing, she says she doesn't want to do them anymore. I asked her what was going on at school this week because she had an excellent week last week and a terrible one this week, she gets really upset and just says she can't take it anymore.

I can't talk to her psych about it right now. She had been seeing a therapist and we're taking a few last appointments to say goodbye and don't have anything set up with the psych, a whole other problem. I love her psych, but he's very hard to get into. If you don't make appointments a couple months in advance, you aren't going to get anything unless there are cancellations. I have now learned that and will make sure to make appointments ahead of time.

I'm just so frustrated. She can be the most wonderful, funny and loving child then something sets her off and she's uncontrollable. I sometimes avoid doing things with her for fear of what will happen. For example, we have a birthday party today. While normally a birthday party wouldn't concern me, this one does. It is the biggest, craziest birthday party you can think of. Tons of people, lunch, cake & ice cream, then swimming. The problem is, large groups and noise are one of Lilly's triggers. She can only take so much. Then there are the opinionated people that don't understand what is going on with her, mostly because I don't tell many people about her diagnosis. We've already discussed that there will be no arguing when it's time to leave. Best part is, she aparently understands more than I thought. She told me 'ok, I don't like all the noise anyway.'

Sorry this is getting to be long, I just have a lot on my mind lately and no one who truely understands. It has also been a stressful time besides her diagnosis. At times I feel like pulling all my hair out. She also has Amblyopia (lazy eye) and has to have surgery July 2nd. I need to figure out how to explain that to her about a week before it happens.

Thanks so much to anyone who actually reads this. I really am as frustrated and crazed as this post probably sounds right now. Some days I feel like my mind is going in a million different directions and I can't seem to follow one thought. I just feeling like going out where no one can hear me and just scream at the top of my lungs.

Tami
Lilly 6/7/04 PDD-NOS

iVillage Member
Registered: 06-02-2004
Sat, 05-29-2010 - 3:42pm

Fist of all, sending lots of hugs your way. Raising a child on the spectrum is no easy task. Your post sounds so much like something I would write. My dd, who is also named Lily, is 7 yrs old and she sounds a lot like your dd. She hates crowds and parties, etc. and it makes me so sad to know that she can't enjoy things that are supposed to be fun for a kid her age. I don't know if this is true of all children on the spectrum, but my dd typically regresses in some areas as the end of the school year gets closer. I think it's the typical "burn-out" that most kids get, only worse. Maybe that's what is going on with your dd too. Also, I know what you mean about just when you think you've figured out triggers, moods, etc, then your child totally switches everything up on you! It is so frustrating. For the most part, I just have to keep telling myself that I may never quite understand what is going on in her brain. I've been reading a book lately that has helped me some, though. It's called "Kids in the Syndrome Mix of ADHD, LD, Asperger's, Tourette's, Bipolar and More!". It also covers Sensory Integration Disorder, OCD and Anxiety. The author is Martin L. Kutscher, MD. Tony Attwood is also a contributor to it. Anyway, it might be a helpful read for you. I hope that it helps just knowing that you're not alone for this roller-coaster ride.

Amy~mom to Natalie, Lily (pdd-nos, Sensenbrenner Syndrome) & Joshua

iVillage Member
Registered: 09-22-2004
Tue, 06-01-2010 - 12:21am

Wow, both of you have a lot going on right now. I know when my daughter has a lot coming up, she freaks about everything. This happens a lot around her birthday and Christmas. Something about the anticipation just puts her some kind of horrible cycle. I really have no clue how to handle it either. I just try to remain calm and remind myself that if she was able to cope with it better she would. I try not to react in a way that is just going to make it worse and take extra care with transitions, but really it hasn't made it much better.

I understand what you are saying about other people. I have had to drag my daughter kicking and screaming out of more than one place. This past Saturday I had to drag her out of dance class (she was having a tantrum) and she was trying to kick and hit me (this is not a regular occurrence, they were doing their tap routine wearing ballet shoes and it set her off like I haven't seen in about a year). Oh, the looks that we got, but really what can you do. Once when I was at Disney she had a total meltdown and this old lady said to me "some people just shouldn't have children", unfortunately for her my mom overheard the comment. Suffice it to say, I think she will think twice the next time she makes some snide remark. I don't confront anyone unless my daughter isn't around. I don't want to put her in the middle of an ugly situation. It sucks, people can be rude and judgmental.

Kerri

iVillage Member
Registered: 04-11-2010
Wed, 06-02-2010 - 9:19am

Meltdowns in public are very tough. For the most part, my dd only tantrums at home, but I have been there a few times. The last was when we were camping a couple weeks ago. She was out of her element, and she went off on her bike. She was supposed to stay close and she rode to another part of the campground. She wants so badly to be more independent, but she has little fear of anything. When she came back (my nephew went and found her) she knew she was in trouble so instant meltdown. My in-laws don't know her diagnosis and my sister-in-law says "I'd just beat her butt and give her something to cry about." I just simply said that it wouldn't do any good. Just makes me crazy that some people think they know how to handle YOUR child. Grr.

Tami