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maybe I can get some help here

706 views 10 replies 6 participants last post by  LynnS6 
#1 ·
My DD (7) has never been officially diagnosed with anything. I'm afraid of medication being pushed so I am trying to handle some of her behavior by myself for now.

She has an extremely sensitive nervous system. Im pretty positive she has SPD. Smells used to upset her so much that she would cry hysterically. Noise, socks, too much movement from people near her......

I have all of this besides the smells hurting me, so I am very empathetic about it.

She has an unbelievable temper and the impulse control of a 3 year old when it comes to lashing out physically or verbally to family members. At school she is a "model student".

She has frequent stomach aches, headaches, allergies, but is otherwise healthy (bloodtests, labtests......)

We have tried elimination diets for up to 4 months at a time and they dont help. It seems that the physical ailments are due to anxiety and anger. She HAS to be right, she needs power to feel okay. Those are normal things for anyone to feel, but not to this extreme. I try not to compare her to my DS who is only 5, but he is making me realize that she may be what is considered a special needs child. Most days are pretty hard with her. She fights with her brother, says nasty things all day and cant stand the day to day responsibilities in life. I spend a good amount of quality time with her and during that she is a sweetheart, but I cant spend all day chit chatting with my arm around her eating sweets.

I must add that she is smart, has a GREAT sense of humour, and is extremely EXTREMELY artistic.

Her ability to draw the way she does (imo) is what stunts a lot of her other functioning.

Im looking for advice from people with kids like this on a particular situation that I x posted in GD.

here it is

http://www.mothering.com/community/forum/thread/1285637/predicament-with-discipline-for-dd-s-room-wwyd#post_16118027
 
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#2 ·
If you're pretty sure she's got SPD, I would seek out an occupational therapist who specializes in SPD for an evaluation. Occupational therapy does NOT include medication, though children with multiple issues may indeed have medication. OT for children with SPD works a lot self-regulation, the exact things that your daugther appears to be having trouble with. It can also give you things to do at home to help her regulate herself.

Children with SPD are often delayed in self-regulation and need the adults in their lives to help 'co-regulate' them for longer than typically developing children. Thus, it might be good to consider, for now, your daughter emotionally younger than she is. Her ability to self-regulate, as you've noted, is less than that of her 5 year old brother. The same was true in our family when ds was 5 and dd was 2. Dd could get used to things, ds couldn't.

I suspect there's an anxiety component here because of her need for control (I come from a long line of people with anxiety and control issues, so those symptoms are very familiar. The worse the anxiety is, the more the need for control. The more overwhelmed we are sensory-wise, the more we need to control. My husband cannot understand this pattern.) If you think anxiety, more than SPD is the problem, you might want to look into counseling/play therapy or art therapy. Since she's artistic, I'd be tempted to try art therapy first for anxiety (if she has it).

I know it's scary to go down the road of assessment and coming to terms with the fact that your child may not be typical. But, I'd ask that you take a deep look at your fear of seeking a diagnosis for your daughter. I understand you don't want her to be prescribed meds. No parent really does. However, is not having a diagnosis making your daughter's life harder than it should be? Would having an evaluation and a diagnosis put you in a position to be able to help your daughter better? Sometimes having a name for something (is it SPD? ADHD? Anxiety? other?) can help you narrow your search in terms of looking for things that work for your child. It still means you'll have to tailor whatever you try to the child, but you'll have a more reasonable set of things to try.

Some of those things may well include medications. But many will not. You also have the right to refuse medication, so getting an evaluation doesn't automatically equal meds. There are a number of parents on this board who started off saying "no meds. nope. not going there." and ended up with positive stories about the difference medication can make. Medication is not always evil. Medication is a tool. No more, no less. Please don't let your fear of medication keep you from getting help for your daughter.

Finally, if you think it's SPD, I'd highly recommend:

Sensational Kids

The Out of Sync Child (and the Out of Sync Child Has Fun).

Both have ideas for things you can try at home.

If you suspect anxiety, I would try:

Freeing Your Child from Anxiety (for you)

What to do When You Worry Too Much (for both of you).

Finally, a book that's really good that I love:

The Challenging Child. I believe there's a chapter or two in there that you'd find helpful (the Highly Sensitive Child; The Defiant Child?)
 
#4 ·
Quote:
Originally Posted by LynnS6 View Post

I know it's scary to go down the road of assessment and coming to terms with the fact that your child may not be typical. But, I'd ask that you take a deep look at your fear of seeking a diagnosis for your daughter. I understand you don't want her to be prescribed meds. No parent really does. However, is not having a diagnosis making your daughter's life harder than it should be? Would having an evaluation and a diagnosis put you in a position to be able to help your daughter better? Sometimes having a name for something (is it SPD? ADHD? Anxiety? other?) can help you narrow your search in terms of looking for things that work for your child. It still means you'll have to tailor whatever you try to the child, but you'll have a more reasonable set of things to try.

Some of those things may well include medications. But many will not. You also have the right to refuse medication, so getting an evaluation doesn't automatically equal meds. There are a number of parents on this board who started off saying "no meds. nope. not going there." and ended up with positive stories about the difference medication can make. Medication is not always evil. Medication is a tool. No more, no less. Please don't let your fear of medication keep you from getting help for your daughter.
I agree.

Ds was 6yo before we finally tried medication and it has improved things a lot; he also has weekly CBT.
 
#5 ·
Quote:
Originally Posted by LynnS6 View Post

If you're pretty sure she's got SPD, I would seek out an occupational therapist who specializes in SPD for an evaluation. Occupational therapy does NOT include medication, though children with multiple issues may indeed have medication. OT for children with SPD works a lot self-regulation, the exact things that your daugther appears to be having trouble with. It can also give you things to do at home to help her regulate herself.

Children with SPD are often delayed in self-regulation and need the adults in their lives to help 'co-regulate' them for longer than typically developing children. Thus, it might be good to consider, for now, your daughter emotionally younger than she is. Her ability to self-regulate, as you've noted, is less than that of her 5 year old brother. The same was true in our family when ds was 5 and dd was 2. Dd could get used to things, ds couldn't.

I suspect there's an anxiety component here because of her need for control (I come from a long line of people with anxiety and control issues, so those symptoms are very familiar. The worse the anxiety is, the more the need for control. The more overwhelmed we are sensory-wise, the more we need to control. My husband cannot understand this pattern.) If you think anxiety, more than SPD is the problem, you might want to look into counseling/play therapy or art therapy. Since she's artistic, I'd be tempted to try art therapy first for anxiety (if she has it).

I know it's scary to go down the road of assessment and coming to terms with the fact that your child may not be typical. But, I'd ask that you take a deep look at your fear of seeking a diagnosis for your daughter. I understand you don't want her to be prescribed meds. No parent really does. However, is not having a diagnosis making your daughter's life harder than it should be? Would having an evaluation and a diagnosis put you in a position to be able to help your daughter better? Sometimes having a name for something (is it SPD? ADHD? Anxiety? other?) can help you narrow your search in terms of looking for things that work for your child. It still means you'll have to tailor whatever you try to the child, but you'll have a more reasonable set of things to try.

Some of those things may well include medications. But many will not. You also have the right to refuse medication, so getting an evaluation doesn't automatically equal meds. There are a number of parents on this board who started off saying "no meds. nope. not going there." and ended up with positive stories about the difference medication can make. Medication is not always evil. Medication is a tool. No more, no less. Please don't let your fear of medication keep you from getting help for your daughter.

Finally, if you think it's SPD, I'd highly recommend:

Sensational Kids

The Out of Sync Child (and the Out of Sync Child Has Fun).

Both have ideas for things you can try at home.

If you suspect anxiety, I would try:

Freeing Your Child from Anxiety (for you)

What to do When You Worry Too Much (for both of you).

Finally, a book that's really good that I love:

The Challenging Child. I believe there's a chapter or two in there that you'd find helpful (the Highly Sensitive Child; The Defiant Child?)
thank you for this.

Yes, DD does have anxiety also along with the sensory stuff. I had no idea that OT helped with impulse control.

Does the diagnosis for SPD come from the pediatrician?

She is 7 now, would that be too late to start OT?

Ive read all of those books above except Freeing Your Child From Anxiety (I'll check it out). I also loved The Challenging Child. Its like those two chapters were written about her.

The thing that worries me about an evaluation is that I could take her to 5 different child pyscologists and they will give me 5 different diagnoses along with 5 different drug or drug free combos. My fear is that she and we will become more confused than we are now. The kids in this area are all on something for allergies or behavior (well not all, but a lot). I see how it is.

I'm not disputing the fact that there can be the right help, it's a matter of just trusting people we don't know and putting her well being in their hands. Ive seen too many things get worse or go no where in these situations. I also don't want to overreact. I was the same as DD as a kid, minus the self regulation. I got spanked- none of the reactions she gets away with even occurred to me. She is capable of staying in line at school for fear of embarrassment. She is very shy and couldn't bear for anyone to know how she can act.

There are times I feel like she is out of control, but that could be partly my anxiety and need for control. I feel that the unbelievable horrible things she can say are an indication of an anger problem. I cant understand rage. It makes me feel feelings that I have never experienced. She rages sometimes- I am a bad match for that.

So, I know she has some problems and definitely could use the "right help", I just don't know where to get it. I don't want to get mixed up in a situation where I have a "failure to comply" problem KWIM? I'm just rambling at this point.
 
#6 ·
A psychologist cannot prescribe medication though I supposed they could, in theory, pressure you to go to a psychiatrist for meds.

We first tried a family therapist and ds made no progress, though it helped us a bit. Then we had ds evaluated by an OT and received a very helpful written evaluation. Around the time we received the OT report, ds' did something to concern the family so we went to the psychiatrist-- we were working on getting an appointment with the dev. ped. but we knew that would take months--we were on a break from the family therapist for the summer, who wanted to wait until ds started first grade before referring us to a psychologist or psychiatrist. We went to ds' psychiatrist for a diagnosis (though we already knew), and by that point we were ready to try medication. However, she does not do ds' therapy; ds goes to a behavioral therapist weekly. We now finally have an appointment with the developmental ped for February.
 
#7 ·
Quote:
Originally Posted by Emmeline II View Post

A psychologist cannot prescribe medication though I supposed they could, in theory, pressure you to go to a psychiatrist for meds.

We first tried a family therapist and ds made no progress, though it helped us a bit. Then we had ds evaluated by an OT and received a very helpful written evaluation. Around the time we received the OT report, ds' did something to concern the family so we went to the psychiatrist-- we were working on getting an appointment with the dev. ped. but we knew that would take months--we were on a break from the family therapist for the summer, who wanted to wait until ds started first grade before referring us to a psychologist or psychiatrist. We went to ds' psychiatrist for a diagnosis (though we already knew), and by that point we were ready to try medication. However, she does not do ds' therapy; ds goes to a behavioral therapist weekly. We now finally have an appointment with the developmental ped for February.
How do you go about getting an evaluation from an OT? Maybe a dumb question, but the only direction I've been lead by DD's dr is to a psychologist practice with an onboard psychiatrist.
 
#8 ·
hi. i've not read this book, but have several parents on here mention "the mislabeled child." not saying your dd needs a dx, but personally i found that dd having a dx has family members and friens start to understand her a bit better. out of curioisty, how does she do socially with her peers - i.e., girls her age?
 
#9 ·
Your DD sounds tremendously like my DD, who is also 7 (almost 8). Definite SPD issues (clothing, shoes, bright lights, etc.) and sometimes extreme impulse/lashing out issues. She is not violent, but can fight back (especially if I'm trying to "contain" her). We have just started an evaluation through her school. She's also been diagnosed with ADD by our family doctor. However, I refused medication initially. I'm waiting for the school's assessment, as her teacher and I are unsure if there is a learning disability/other processing disorder going on as well. There is no reason why you would need to accept any medication outright. You are the parent and you get to decide that.

My DD's behavior at school is quite good, despite the ADD tendencies of mind wandering and losing focus. She would never speak rudely to a teacher at school or "fight" as she does at home. Our family doctor mentioned that they "save" it for you, because they know you will still love them. I asked her one day (her father and I are divorced), why she will do things at her father's house that she won't do for me. She replied with, "I don't want them to laugh at me." (Her father got married a couple years ago and she complied with getting her hair done by a hair stylist (what?), wore an uncomfortable crunchy dress, and sandals that gave her blisters.) However, she knows that I won't laugh or yell, and that I understand (I also have realized I have some definite sensory issues, just not to her extent - and I am laidback to an extreme).

Through her evaluation at school she has started going to the "Sensory Room" where she works with the on staff OT (this is just through our normal public school system) for 10 minutes mid-day. I've noticed a huge improvement. She is so excited when she comes home from school to tell me what she did in the sensory room. Her teacher and I hope it will improve her concentration and focus for the rest of the day.

As long as you have insurance, I believe you could just ask for a referral to see an occupational therapist. There may be a copay, or it may not be covered at all. This is the first time my DD has had any OT, and I wish I'd looked into it sooner. (Although I always felt, before her teacher this year, that everyone poo-poo'd my SPD concerns.)

I'm not sure if any of that helped.... mostly I encourage you to start an evaluation. Can you do it through DD's school? That removes the drug issue, since no one there can prescribe drugs. I am hoping to get an IEP in place for DD. Her teacher this year is amazingly wonderful at making concessions and helping DD succeed. However, some year she won't have an amazingly wonderful teacher... and that will be an impossible situation for her without an IEP.

Hoping this helped some... I know in dealing with my DD, it can really be exhausting some days.
hug2.gif
 
#10 ·
Quote:
Originally Posted by mom2happy View Post

Quote:
Originally Posted by Emmeline II View Post

A psychologist cannot prescribe medication though I supposed they could, in theory, pressure you to go to a psychiatrist for meds.

We first tried a family therapist and ds made no progress, though it helped us a bit. Then we had ds evaluated by an OT and received a very helpful written evaluation. Around the time we received the OT report, ds' did something to concern the family so we went to the psychiatrist-- we were working on getting an appointment with the dev. ped. but we knew that would take months--we were on a break from the family therapist for the summer, who wanted to wait until ds started first grade before referring us to a psychologist or psychiatrist. We went to ds' psychiatrist for a diagnosis (though we already knew), and by that point we were ready to try medication. However, she does not do ds' therapy; ds goes to a behavioral therapist weekly. We now finally have an appointment with the developmental ped for February.
How do you go about getting an evaluation from an OT? Maybe a dumb question, but the only direction I've been lead by DD's dr is to a psychologist practice with an onboard psychiatrist.
I look up one on my insurance plan and called them. Your doctor may not know what an OT is or how they can help with sensory issues.
 
#11 ·
This website (SPD Foundation) has a list of providers:

http://www.sinetwork.org/treatment.html

You can also ask your doctor to a referral for someone who deals with sensory issues or call your insurance company. Do you know anyone with a child with sensory needs? Anyone with a child who has autism? Ask them what OT they use. We found ours through word of mouth and she was GREAT. I recommend her to anyone I know in the Portland metro area. It's tough finding a good one, and you really do need to ask them what they know about sensory processing. Finding someone who works with kids with autism is usually a pretty good bet, because kids with autism often have sensory issues. (Our ds doesn't, but many of the kids our OT saw did.)

Our insurance was such that we could self-refer.

As for the rage: It's another symptom of her being out of control. She gets all wound up and doesn't know how to regulate her emotions, and so they explode in rage. She may need something other than OT to work on controlling her emotions. OT works on the physical side of self-regulation, but some kids need more work than that. It might be that once the sensory stuff is under control, she'll have enough cognitive control to be able to deal with emotions, or she might need to work with a counselor. I wouldn't be worried if she did. You're giving her the tools she needs to succeed in life, which is great. And no, 7 isn't too 'old'.
 
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