Desperately seeking help

My daughter has issues with SPD, and I feel that she has some strong anxiety problems also. She has been getting headaches, telling me she is having a hard time breathing, always complaining of stomach aches. She hardly eats anything because of her sensitivity to taste and texture and is very thin.


She started kindergarten in September after finishing out pre-k and I have noticed that she is extremely concerned about her appearance, what her hair looks like, clothing etc. She fell to the ground and started crying this morning when we were just about to enter her class. I asked her what was upsetting her and she said she was afraid the kids were going to make fun of her for crying, but she cannot explain why she started crying.

She also seems obsessed with when she was a baby. She always wants to see pictures of herself when she was a baby, always talks about babies and tells me frequently that she wishes she was a baby. This morning she told me she wished she was her little sister.

She has two counselors that come to the house but I just don't feel like we are getting the proper help. Her kindergarten teacher thinks that she just reacts this way because she wants control. I disagree, but I have no idea how to help my daughter and I know she cannot act like this in first grade or she WILL get made fun of.

I do not understand her problems and it seems that no one else does either. Someone who runs the daycare says she is like a rubix cube because we just cannot figure out what is bothering her.


D

The SPD Help Line Answers...


My goodness... your poor daughter; so much conflict and pain. This is not unusual for an SPD kiddo, but that doesn't make it any easier does it? I don't want you to feel alone anymore. We are here for you and I will introduce you to over 1,000 other caring people in a minute. For now, I want you to take a breath... breathe deep and know, really KNOW, you are not alone. What difficult burdens to carry around... you and her both. Let's see what we can do to get you both the help you need, ok?

First, I do have a few questions for you... has she been officially diagnosed with SPD? The reason I ask is because I want to know if she has been in treatment for it... has she had an Occupational Therapist working with her? In the past? Now? Who diagnosed her, if she does carry the "official" diagnosis?

Why? Because the "simple" and immediate answer is for her to be in Occupational Therapy with a trained OT who works with kids with Sensory Processing Disorders. She NEEDS this more than anything, given her sensitivities and resulting anxiety (most likely from the SPD itself). THIS is what will help, who will understand her, who will be able to start working on the underlying causes of her anxiety, pain, self-esteem, regulation, and defensiveness.

If you need help finding an OT, please read my first edition of my free newsletter, The SPD Companion, entitled-- Finding An Occupational Therapist For SPD. If you have difficulty finding one, let us know what state you are from and perhaps we can help further, but you should find someone you can work with in the International database linked to via that newsletter.

Now, if you are already in OT? I have to tell you, it may not be working too well. I am wondering how much experience or knowledge the OT has regarding SI therapy. I am concerned that you may need other people in your daughter's life that have more specialized knowledge of SPD. What do you think? I would like to know if your daughter is currently working with an Occupational Therapist. It would help if we knew, so I can direct you further.

Next, what have you read about SPD? What are some books that you have read? Do YOU fully understand how her SPD affects her and how the anxiety might be related? You are going to need to get your hands on some information that will help you understand this better, as it appears the professionals are not explaining it well, or that they don't even know themselves (just an education thing, nothing about their competence as a profesional). So, we need to get you hooked up with some information and professionals that are knowledgable about SPD so we can get you the help you and your daughter deserve. I can direct you better once you answer my questions about OT, ok?

Now, about the anxiety specifically. Oh, boy... do I understand!! My daughter was the same way! Oh, the headaches, stomachaches, can't breathe, can't eat, etc. It is so hard to see our kids going through this and not feel we have the resources or knowledge to help them the way they need to be helped. For a long time there (almost two years, at it's worst) I really was not sure I would EVER have the information or tools I needed to help her through her anxiety!! It caused her so much pain and confusion, and I felt helpless. What can I DO to help her through this??? That is exactly when I reached out for professional help. I personally could NOT help her the way she needed. It was too painful, for both of us.

Through the help of a GREAT counselor AND further interventions based on SI theories, she is finally able to help herself to the point of ALMOST being comfortable in the world and in her own skin. It has taken years, but we were not able to continue her OT therapy (professionally, besides me) long enough to make quicker progress. There were treatments I was not aware of and we did not have the resources we needed. If we can help you find those, your daughter should find relief quicker, not overnight, but quicker.

The two biggest things that have helped my daughter with her anxiety are: BREATHING and a MENTAL CHECKLIST. Two things her counselor taught her. Basic anxiety techniques should be well known to counselors... are they using any specific tools with her to address the anxiety?? For my daughter, learning relaxation breathing techniques was our first step. Then, her counselor helped her through some specific anxiety provoking situations by using a mental checklist (such as, I am safe, I am with adults who can take care of me, the adults I am with will not let anything happen to me, my dog is safe, my mom is safe, my dad is safe, etc. etc... all the specific things that comforted her, that she worried about. And, the BIGGEST anti-anxiety technique? CHOCOLATE!! Yup, can you believe it?? If she was STILL feeling anxious, she could eat a little chocolate... apparently it has a calming effect and gave her some control over her own symptoms. She was in control... she could DO something to help herself. And, of course, chocolate is simply delicious! :0)

I tell you this, not because this is the answer for your daughter specifically. But, to know... you are not alone, she is not alone, there are things that can be done to help her deal with her anxiety, and that it is possible to get to the other side of this with some good professional help, ok? KNOW that! Breathe... deep breath in and out... in through the nose, out through the mouth. You and her will get through this and be ok!

I would love to know the answers to my questions asked earlier about OT and her current counselors. What treatments are being done, have been done, and where she stands with Occupational Therapy as it relates to her SPD specifically. Then, we can proceed further, ok?

Also, know that relaxation cd's can work wonders before school, during times of anxiety or, ideally, before it even hits. You can find some good ones here...




Additionally, try to get your hands on some more books about SPD. You can find those here... The Sensory Processing Disorder Bookstore

Lastly, as far as over 1,000 other parents waiting to help you... to validate you, to support you, provide resources for you, techniques to try, and therapies to help her address the SPD symptoms? You will find 2,000 open arms waiting for you here... AllAboutKids


Anyone else have some suggestions for relaxation for this precious little girl who is struggling so hard? Poor thing... let's see what we can all do to help her.

Hugs to both of you.

I look forward to hearing back from you... just respond below.

Michele Mitchell

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Jan 10, 2008
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Been There Done That!
by: Bird

My daughter is 7 now and was diagnosed when she was 4. I only wish my education had gotten her help sooner! I'm a teacher with a special education background and I knew something was wrong but couldn't put my finger on it. The doctors were no help. She was just a 2 year old, she's 3, she's figuring out where she fits in. No that wasn't it. And it was tearing us apart!

Finally a neighbor sent me in the right direction. After 2 years of intense therapy, she was dismissed in May.

Life is not perfect but we know how to help her most days. Some days we don't but we get through it. She too is very concerned about what others think of what she is wearing or if they are looking at her funny. Reassurance and lots of hugs help! Hang in there. You will start to see a beautiful little girl who just wants to be understood!

Oct 26, 2007
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You know best..
by: Anonymous

My son doesn't quite act the way that your daughter does, but I can relate a litte. He has these tantrums (I've read about others with this problem), but they aren't 'I'm not getting what I want' tantrums, they're more like 'Why does the world hate me/What did I do to deserve this' tantrums. It's hard to watch.

AJ (my son) specifically has language difficulties and I've found that if I show him something visually, rather than try to talk him down, he responds better. It's a relief that these fits only last a minute now instead of 10. You'll find something that works eventually and it will improve the quality of both your lives dramatically.

Another thing I wanted to comment about was that I understand the frustration of people (in the school for example) thinking they know what is or isn't wrong with your child when it goes against what your 'mother's instinct' tell you. AJ got tested, just today, to get into a PPCD classroom because he is so language delays. The evaluator told me she thought he was just being defiant when he wouldn't do what he told her! I mean, he's in there getting tested because I don't think he understands 1/2 of what he hears and he's already been diagnosed with a language disorder!!! HELLO!!

It's crazy what lengths people will go to to tell you how normal your kid is when all you want to do is get them the help they need. This lady also insinuated that I just always cave into his fits and don't properly discipline him.

Anyway, the point is that you are her mother and you know her best, and don't let other people tell you different. Her teacher trying to tell you that your daughter wants control is basically the same thing as what I was told. What they are doing is taking the specific behavior out of context with the diagnoses that have been made, and then labeling our children as deviant/disobedient, etc.

All I know is, stick to your guns! That's what I did today. When she told me she couldn't tell if he had a problem with language or just had a behavioral problem, I asked her wouldn't she have a behavior problem if her whole life she felt like no one understood anything she said, and she only understood about 1/2 of what other people said to her?? I know I would!

Good luck.

Oct 19, 2007
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Somebody to chat with
by: Laura

I totally identify with having a child that is so anxious that it makes you feel like you are going crazy. I have been looking for a while for other moms to talk about this... Feel free to chat, comment in my blog!.

htpp://sensoryprocessing.wordpress.com

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