daughter not coping well

Question

My 11 year old daughter is not dealing well with my tx.  She has Adhd and a sensory processing disorder so she has a behavioral therapist at school.  She seems to be doing well at home but I've been getting alot more notes home about her breaking down at school and slipping back into old habits.  I went up and talked to her BT today and we think it's because she feels she has to be strong at home. She let the BT hug her for the first time in 3 years and she hates to be touched.   Her real father died when she was a baby and she has never had any issues with it but she's been bringing it up to the BT alot.  I think the fact that he's gone makes the possibility that I could die more real to her.  I've explained to her how the meds work and that my immune system is making me feel bad after the shots.   I've told her I will be ok and me feeling bad means the meds are doing their job.  Most nights her and daddy fix dinner and wash dishes together.  He's doing a really good job teaching her to cook and I think they both enjoy that special time together.  We do girl scout badges at home and have game, craft, and movie times often.  I try all the time to get her to keep a diary but she hates to write.  Aside from just reassuring her over and over is there anything anybody else has tried that I'm not thinking of?  Or maybe an interesting book that would be on her level?  I would really like to get her into therapy but I'm on driving restrictions because of the seizure I had a couple weeks ago.

rivll · Accepted Answer

Hi,
I am sorry for what you and your daughter are going through.
If she hates to write, maybe she can try art or photography to express her feelings.
My mother was very ill when I was her age and I didn't do well either. No child can live with that sort of pain without trying to find some sort of outlet.
It is not about making pretty pictures it is about putting her pain somewhere outside of her heart.
You seem like a wonderful mother and even though she is having a hard time, it seems very likely with you and your husband behind her, she will get through it.
It is a kind of cliche but it is also true that hardship can make you a better person. As she grows she will learn she is not alone in this, we all hurt and what we do with the hurt is what really matters.
Hang in there dear,
I wish you and your famiy all the best.

Advocate1955 · Answer

Non verbal learning disorder (NLD or NVLD) is a type of learning disorder in which very often the individual is very verbal and has high verbal intelligence, but often has lower abilities in terms of spatial perceptual and social skills.
Advocate1955

runsincircles · Answer

After that she started seeing a new dr in the same office, but I finally got the name of a good ped from her BT.  She melts down at school more than home so I thought it was for attention at first.  She does have anxiety but the hand wringing thing was forced.  I'm not saying she wasn't anxious but that's not one of her coping strategies and never has been, she just really wanted that toy.  Once I told her to stop and she wasn't getting it she was fine, if she was having that much anxiety she would have been tearing up paper in her room after I told her to stop.

BoceprevirGal · Answer

Well, I really dont think that was a good idea, for the Doctor to talk about her possible issues, right in front of her like that, and was he even a specialist in that field?
  There is such a wide spectrum of behaviors with
people. After a series of expensive tests, I was told my daughter had "non-verbal learning disorder"...and I still have no idea what it is~ Although she is 20 yrs now, and does experience tons of anxiety.
   Good for you, and your daughter, that you are in Treatment. When she is a teen, you will need all the strength you have.

Advocate1955 · Answer

Sounds like her anxiety is pretty high right now.  I would try some of the calming things, maybe the weighted blanket, perhaps the calming music, and as Karen said, the calming, repetitive phrases.  Maybe keep Christmas more low key, low activity this year.  Try to avoid the melt downs if you can, go more for helping her think of problem solving strategies such as playing something quiet in her room.  Keeping things in a structure and a routine that is calm and predictable (as possible) may help.  Pacing and hand wringing is a sign of anxiety and overload.  Also, overfocusing on health issues (or any issue) is also a sign of anxiety.  She is at an age where you may see that increase even more.
Advocate1955

runsincircles · Answer

We went to the store yesterday and got her a few "sensory" toys.  Just some things she likes to feel in her hands.  I wasn't gonna do alot at home as far as the sensory issues, atleast not that she realized, because with my chronic illnesses she really focuses on anything health related.  She was there when the dr tried to tell me she was autistic because she has ADHD, so she wouldn't let that go for months.  She was doing great and hasn't had any issues in a long time, but she's falling back into all those habits we've worked so hard to get past, so it's time to do something.  We have sensory activities already but she didn't know thats what it's all for.  She's already started trying to milk it though.  We put a couple things up for christmas and she was pacing and wringing her hands trying to get me to give them to her and that's never been her reaction to anything.  If anything it makes her feel worse.  If she's overloaded she either melts down or stays in her room and plays til she feels better.

crossroadsec · Answer

It's hard when they're so young. I've taught a lot of students with ADHD. You've gotten some good advice. No matter what age, our kiddos do suffer when we are ill. My adult daughter and granddaughters are still dealing with my health crisis. I like the idea of code words. I also use familiar repetitive phrases such as: "Life can be tough, but the women in our family are tougher!" or "No matter what happens, families stay strong and love each other in the hard times." 
Regarding art, my granddaughters made little posters with me. We made vision posters by cutting out our favorite things, or writing plans we were making for the future. We all have them on our walls. 
One thing I did was to make use of the ridiculous. We would have bouts of laughter when my wig was on crooked, or when I cried because I couldn't find my shoes as I left for work and I had them on. I would sneak a sodium laden french fry from their plate and tell them to call 911 if I passed out. By making fun of the situation, it helped us all to keep the joy going when we could. 
I hope this helps. We are all concerned about how it affects our families. Your daughter is learning strength and coping skills that can only help her in the future. She's lucky to have you.
Karen :)

BoceprevirGal · Answer

Good for you, for increasing your one on one quality time, with your daughter, while you are less active, on Tx.  I'm afraid my children got a bit spoiled, while I was on my Tx, because I was more laid back about stuff (rules/discipline) because I knew oneof the side effects of the ribaviran was "riba rage".
   I made a game of it though, and I only got it when I had too many things to do in one day, and then had to go out at night. Once over-tired and cranky, I would become irritable...so I made a "code-word" for it ( yeah, it was "riba-rage" lol)..so when I started to mumble it, and then SCREAM it, the kids would scramble up and go running off...at which point I took I out on my neighbor (who, thankfully wasn't home, lolz) and I vented on him, for ragging on me, about parking in front of his house, which IS a public parking spot. I sreamed out into the nightm, referring to my neighbor as "*** Dan"..

Advocate1955 · Answer

Here are some links to a company that carries all kinds of sensory therapy equipment:

http://www.therapro.com/Sensory-Motor-C5912.aspx

http://www.therapro.com/Tools-for-the-Body-C5960.aspx

http://www.therapro.com/Tools-for-the-Ears-Eyes-C6053.aspx

http://www.therapro.com/Sensory-Integration-Equipment-C307818.aspx

http://www.therapro.com/Economy-Therapy-Balls-P321142C307957.aspx

http://www.therapro.com/Weighted-Products-C297460.aspx

Advocate1955

runsincircles · Answer

We do have a box and some other random things but I'm thinking something new to add would help.  I'm thinking something fairly new to her would be more of a distraction from her mind.  She plays and fidgets with certain things but really seems bored by all of it, that's why I think she needs something new and unfamiliar.  I'm thinking of getting her one expensive item for xmas and some smaller toys to switch in and out maybe.

I'm really hoping taking away chores except fixing dinner with daddy and helping me from time to time will give her more time to cope.  I think I might try kit n kaboodle.  They're a bit pricey but I don't shop online.

Advocate1955 · Answer

You could put together your own box of things like fidget toys, things with different textures, etc.  You could buy a therapy ball or a trampoline for indoors for your house.  If you google sensory integration manipulatives, you'll find some things, but they are expensive if you buy them in kits and such.  Clay is another thing kids with sensory processing disorder like.  Sounds like she might need some "down" time at home so she can regulate herself before she starts chores or homework?  I wonder if you could find a therapist who would come to your house to see her?  Your public transportation system probably has a disability service that you could apply to for her, perhaps you could get her qualified and then she could have a ride door to door to a counselor?
Advocate1955

runsincircles · Answer

She does have a "sensory box" and she gets alot of help at school, such as sensory breaks and coping skills.  I don't have anything specially made for it at home, but she has different textures of cloth (including bunny fur), some 5 pound weights, and some other random things.  She spends alot of time blowing bubbles, and coloring the back patio with chalk, but it's starting to get cold out side.  Where would I get things made specifically for this?

I finally got her to talk to me last night and she says we're putting too much pressure on her at home, I'm sure there's more to it, but at least we have a place to start for now.      I really wish I could get her into therapy but I can't get her there if I'm not allowed to drive.

Advocate1955 · Answer

Children with ADHD and sensory processing problems often get easily overwhelmed and overstimulated.  They have a very hard time processing information and processing sensory stimulii.  When you add this challenge to the emotional challenge of anxiety, it makes it even more difficult for them to cope.  The best suggestion that I can offer is to create as much predictability, structure and routine as you can for her at home.  Try to have a similar schedule in the afternoons/evenings each day.  Children with these difficulties feel safer when they know what to expect and there is consistency from day to day.  Try to engage her in some activities that help her be calm and help her focus.  Does she have any sensory integration therapy services?  If not, this type of therapy may help her increase her coping skills as well.  Swings, therapy balls, weighted blankets, and other manipulatives that provide soothing sensory input can be helpful in terms of regulating their system and helping them calm down.  You might also try music with headphones.  There are certain types of music that can be especially soothing for children with ADHD and sensory integration disorder, but I'm not sure about specific titles or CDs.  Most of all, she may need some reassurance that you are doing OK.  She has probably noticed a change in routines at home and it has created anxiety (overload) for her.
Best wishes,
Advocate1955

runsincircles · Answer

We do need to learn more about photography, but we do take pictures quite often.  She likes to set up her American Girl stuff and take pictures of it.  I'm an artist myself so she has a sketchbook of her own and access to many supplies.
  I understand very well how pain can make you stronger and unfortunately my daughter is learning it as well.  Thank you for your suggestions.

nygirl7 · Answer

Great post Riv!  :)

Photography is certainly a great idea. Great post I can't add a darn thing.

daughter not coping well

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