Please help my family

[mustnggrrl00]

Please do not judge me, but things have already gotten out of hand.   I have had to move out of my house, and my husband has had to take vacation to stay home with the kids.  I am a homemaker without a home.

A few months ago my 9yo DiGeorge daughter started really acting out, especially tormenting my 13 yo visually impaired son.  She throws tantrums, stomping up the stairs, then all around her bedroom, just in case we didn't realize she was mad.  She was speech delayed, and lately has regressed to screeching when she is upset, and panting when she is mad.  She throws stuff at me and her siblings, and flat out ignores my direction. On the flipside school has nothing bad to say, other than she doesn't always complete her homework, and is tardy alot.  No behavior problems at school.

She is a Brownie and plays golf and I see her struggle socially, but still no problems at school.

I have nearly been a stay at home mom, I did have a short hiatus a few years ago and returned to work briefly, but have been home for years.  I have been physically and emotionally available to all my children always.

Well, lately my concern has been off the scales, and I have spoken to my therapist about getting her help, but to my discredit I have procrastinated, and now it is too late. 

Has anyone else had these behavioral issues?  With puberty starting earlier, is the DiGeorge going to now sabotage her emotional health, put us both of the defensive, and destroy my family?

Any suggestions, comments, or resources would be appreciated here!~j

[Misspoker]

Hello mustnggrrl00,

Welcome to the group!  I'm so glad you joined us!

It sure sounds like you have your hands full and I hate to hear you are having such a hard time but I can definitely relate.  My daughter, Sierra, who is 11, has had similar issues in the past but thankful I was able to intervene early enough so that it didn't get out of control.  Sierra still has some issues but hers are more at school now than at home because she knows I will not tolerate the little fits she tries to perform.  With the little bit of info you have given, my only suggestion would be to get her into counseling NOW! before it gets worse and do what ever it takes to get a firmer grip on her attitude at home, whether it be taking priviledges away, making her write sentences, time out, or a good smack on the butt.  Don't get me wrong, I do not encourage anyone to spank their child but I, personally have on extreme occassions.  I have not had to in a long time though and I am thankful of that.  Only you know what hits home with your child and what you can do to make her understand just what is not tolerated in your household.  Figure out what it is that would make the biggest lasting impression on her. 

Getting Sierra counseling has provided her with a much needed outlet for problems she deals with in life such as social anxiety, knowing she is different from other kids, not getting to see her father but a couple of times a year, just basic enviornmental stress.  Even though nobody knows our children like we do, there is something to be said for professional training.  Sierra's counselor has a way of explaining things so that she feels like sharing information that she may not express to me or anyone else. 

Sierra also has problems with speech and has had 2 velepharyngealoplasty surgeries and will have another one after puberty.  Yes, the puberty and hormomal changes she is going through may have a big impact on her behavior.   The craniofacial team that Sierra sees has already forewarned me it is going to get worse before it gets better, especially for the next 4-5 years.  This stage in the life of a 22Q child is the worst from my understanding. 

It's never too late to take action.  You have to set yourself up to succeed, not fail.  Get back on top of what is important.  Make EVERY negative action have a consequence and stick to your guns.  Most of our kids are normal in the sense that kids will be kids but they also need constent consistancy. 

Please do what you think is best for your child and do not take anything I say as being harsh.  Although I love my daughter with all of my heart and never want to be cruel to her, I have learned that tough love is the best way to handle her.  She knows her boundaries and the consequences of crossing them.  She is my gift from GOD and tells me at least once a week, "You're the best mommy in the world!" so I know I am doing the right things by her.

If you haven't already, please feel free to read my journals of our life and the issues we deal with.  Believe me, it has been a hard road but we have overcome many challenges and you can do it too.

Please don't hesitate to ask any questions, comment anytime you want or vent anytime you like.  That's the main reason I started a journal...so I could just vent and to give others an insight on life with 22Q.

I hope I have helped in some way.  Take care and keep us posted!

[grammiechelle]

Hi,

I think getting her help now can only help. It's NEVER too late! I too have raised a child with DGS , only we never knew what was wrong until she was 22 years old. Wow!- that answered ALOT of questions! She was/ is an exceptionally sweet,but often self-centerd person. If  one child is taking away from the other(s) there IS a problem. From experience, putting one on the 'back burner' while you deal with this one will only make your life more difficult.

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[mustnggrrl00]

Thanks for your insight.  ~j

[Mom_2_Boyz]

Drew is only 8 yo, so we are just starting to see some of the issues of preteen years.  He really struggles to yield to my/ my husband's will.  If he wants to stay up late, that is the only acceptable answer, for example.  We have really had to crack down and make it clear that it's our way or the highway, so to speak.  I agree with previous posters that you really have set things up for a winning environment, you just need to take those final steps to get there.  I of all people understand how it is to be overwhelmed!  There is only so much you can handle at once.  You want ot be everything to everyone, but that is impossible.  I have 4 boys ages, 8, 5, 3 and 8 months.  The 8 yo is the one with 22q11.  The 5 yo  has Asperger Syndrome.  The 5 yo and 3yo have severe allergies and asthma.  The 8 mo has been having pretty severe feeding issues (he was strictly tube fed until last month) and developmentally delayed.  We just found out last week that he has diminished white matter in his brain.  He will most likely be developmentaly delayed for... ever, I guess.  They don't know how he will grow and develop.  We just have to see.  This often results in Cerebral Palsy in kids.  We also just found out that I have Alpha 1-antitrypsin Deficiency which causes emphysema and liver disease, some times cancer.  I have had a biopsy, blood tests, ultrasounds, etc. all the while dealing with surgeries, etc with the kids.  So, I KNOW HOW IT IS TO JUST NOT BE ABLE TO HELP YOUR KIDS EVEN KNOWING THEY NEED IT!!!!   We have really let Drew's speech therapy slide and I can tell a difference.  We need to jump back in there now that things have calmed down a tiny bit. 

I know from experience that all you can do is your best, mama!  You see there is a need and it sounds like things have finally settled enough in your life that you could do something (or maybe just gotten bad enough that you have to sacrifice something else to help your daughter for a bit).  Just do what you can for her now.  And hang in there.  :)