Dealing with intense sensory processing disorder (SPD) child, about to ruin our marriage

[Buglover]

HI,
I am new here. I have a beautiful daughter who is 6 and was recently (FINALLY!) diagnosis with Sensory processing disorder, most specifically she is over responsive to sound and smell and tantrums very easily. Transitioning for her is very difficult and most mornings start with a screaming tantrum all the way to school. Often she tantrums on the way home also, then when its time for homework. Now obviously this is bad for her, but the strain of dealing with this very difficult behavior has also taken quite a toll on our marriage. Starting when she was about 2 my husband started "opting out" of parenting her (I cant deal with her, I shouldnt have to put up with this, I'm too busy for this...etc) so it has been me, all the way, figuring out how to calm her, how to get her to learn things she didn't want to learn, trying to figure out what was wrong with her (pediatrician felt she was normal until I finally wrote her behavior history down, starting at age 5 months) and now trying to get her homework completed. But now we are to the point where the stress is so overwhelming it just seems unfixable. And her school sends notes home almost every day "spend more time with her on this, she needs help", plus she is supposed to start Occupational Therapist (OT) weekly. I have no more time or energy, I just don't. My whole life is trying to help her, I never went back to work after realizing that she was not the kind of child who could deal well with day care, she seemed to need me near her so bad and not in a manipulative way, she just needed me. So I have tried working from home. I don't know if divorce or staying together in a stressful relationship is worse for our daughter, she is so emotionally sensitive and becomes distraught if you even look at her the wrong way. Part of me wants to try putting her on medications, just to save us all, but I feel so guilty for even thinking about it. Has anybody been through this? There is no handbook for this, I am so overwhelmed myself I can hardly get out of bed some mornings. Maybe I am the one who needs drugs? Can somebody please point me in a direction that might help?

 

[keista]

Welcome.

I don't know if divorce or staying together in a stressful relationship is worse for our daughter

Only you can answer this and what you have to ask is: What makes you less stressed? Kids feel it when their parents are stressed and react to it.

 

[DDD]

Most of us have hesitated about medication. on the other hand we want our children to function at their best level. If they have disorders they often just can't do it without help. Has your child Psychiatrist suggested specific medications? Have you done any research yet? My first marriage failed as the direct result of my difficult child. I understand the stress but most of the time help is available to make your child feel better about herself, to make it easier to develop a positive bond with her Dad and, very importantly, to allow you to enjoy your life. Sending caring hugs. DDD

 

[TeDo]

Just something to consider but the sensory issues you described and the tantrums surrounding transitions screams Autism Spectrum to me. You might want to do some research on that. medications may not help but Occupational Therapist (OT) and schedules and routines and other changes in the way you do things will help tremendously. You might also want to check out the book What Your Explosive Child Is Trying To Tell You by Dr. Doug Riley.

 

[InsaneCdn]

Who did the diagnosis of sensory processing disorder (SPD)?
If you don't have an Occupational Therapist (OT) involved... you NEED an Occupational Therapist (OT). Not just for evaluations - OTs have therapies and interventions and accommodations...

But... as TeDo said, there could also be "more" going on.
From what you describe, I wouldn't think the sensory processing disorder (SPD) diagnosis is incorrect... just incomplete.

Ditto on that book list...

 

[SearchingForRainbows]

I understand how the stress of raising a difficult child can put a tremendous strain on your marriage. There was a time when I thought my husband and I were headed for divorce court. I became a stay at home mom (worked from home) out of necessity. I had two difficult children, ages 1 and 2 when I became pregnant with my easy child (now easy child/difficult child 3.) husband was a hard worker, put in as many hours as possible, and when he came home, he didn't want to deal with the crisis of the day. By the time he got home, he thought he was entitled to just kick back, put his feet up and relax. He totally tuned out. I felt like there was no "me" anymore between taking care of my children, cooking, cleaning, working, researching disabilities, scheduling team meetings, etc...

You need some time to yourself, to do whatever it is that you want to do. Now is the time you need the support of family, friends, and/or a babysitter. You need to schedule some "me" time and then go out and do something special just for you - Get your haircut, your nails done, go for a jog, have coffee with a friend, go window shopping, etc... You'll be amazed at how a few hours away from home on a regular basis can make a big difference in your mood, allow you to see things more clearly.

While I don't have any answers for you, I just want you to know I'm thinking of you, and hoping tomorrow will be a better day... SFR

 

[buddy]

I also think that it is now time to look at what the sensory processing disorder (SPD) is probably associated with.

How does she do with other kids?
What does her play look like....is she able to do imaginative play??? in a creative, ever changing kind of way??? or more imitative (like what she sees on tv or movies or other kids doing)???
How is her eye contact?? (not all kids with autism have poor eye contact by the way, but it is one thing many do have a challenge with can be mild and they look shy or can be severe)

The transition issue is very very common for kids with Autism.

Some ideas... Have countdown cards. Label them with 3, 2, 1 and a green GO card. sometime before you are ready to transition (doesn't really have to be minutes but....) say 3 minutes and then go to car. then a while later (again doesn't have to be a minute but just say it this way) 2 minutes (you are showing her the card) the 1, then OK! time to go.

Have a transition "figit" or bag or whatever that is always used to go with her. It becomes a symbol of comfort and something for her to hold on to.

IF she likes headphones or ear plugs , use them. I always have ear plugs with me no matter where we go in case loud sounds come along. Some kids can't handle the breeze from windows down or the AC/Heat in a car so be aware it could be triggering her.

You can have pictures of common things you do and put them in order (have them laminated with little hole punches in the upper corner and on a ring...you can re arrange the order daily to tell the story of what you are going to do.) ... when it is time to do something, show her the picture (before you do the 3,2,1 go cards)... by the way... you can have a red stop card and when you are at a park etc... you can say three minutes until all done at park. etc.....

There are many ways to make schedule and task boards that are visual and will help her brain process transitions.

http://www.do2learn.com/picturecards/VisualSchedules/index.htm

My son has serious sensory processing problems too. He has been in and out (and now back in) Occupational Therapist (OT) for his entire life. I believe of all his traditional therapies, this has been the most usefull. He used to be a very restrictive eater. He is the best eater ever now. WAy better than I. They work on the internal issues that lead to problems with frustration tolerance, ability to transition, tolerance for touch, smells, sounds etc. I know what it is like to have a full plate... we have therapies scheduled four days per week and it is way more than a full time job. I do not have a spouse to deal with so can't imagine having to sort that out too. I am sorry he is so detatched. If you can get a more complete knowledge of what is associated with the sensory issues, (and there are other things not just autism.... adhd, learning challenges, other processing issues, etc...) then you can attend parent work shops and maybe he would have more hope and confidence and not leave it all up to you. (probably lame, but it does sometimes help to have another person tell you this is REAL and not just up to your wife to fix)

HUGS to you, sorry you are facing this... you are not alone.

 

[TerryJ2]

Welcome.
I am so sorry you are going through this.
I agree, there could be more going on, such as autism.
Either way, would that change your husband's mind? Would he choose to parent her if he knew? Something tells me I doubt it ... unless "I don't need to deal with-this" was said in the heat of the moment.
Sounds like you're on the right track with-her diagnosis, and I would continue to add dxes along the way.
I understand what you mean about pressure on your marriage. But I cannot imagine that your husband has just opted out. Have you given him an ultimatum? Does he know how hard it is for you? If he can't do it, how are you supposed to?

 

[Buglover]

Wow you are all so helpful, I guess I found a good forum! I will try to answer everybodys questions/comments. First of all, she has not even been to a psychiatric yet, just an Occupational Therapist (OT), who diagnosed her with sensory processing disorder (SPD) and added that there might be something else going on, and that if Occupational Therapist (OT) therapy failed to help her we should get her evaluated for other things. I am crossing my fingers its just sensory processing disorder (SPD). Much of the time she is completely normal, her friends and their parents all look shocked when I mention tantrums, and I am shocked that they have never seen one! She literally saves it all for us
which is pretty common with sensory processing disorder (SPD)....but anyway, I am considering medications, its just that she will go 24 hours of "normal little girl" and then have a very bad day the next day, I don't want to lose the normal little girl time I have with her. I am afraid of losing the good days to a drugged kid, as I know all of you have been too. I have considered autism and read about it a ton, since daughter was 2, and it just doesn't seem like her. Her eye contact is excellent, she is extremely observant, happy, etc most of the time. It is when she gets hungry/hot/loud environments/smells that she can just blow up, in addition to transitions and math homework. She is at a very hard NCLB Blue Ribbon school, I thought the structure would be good for her. Maybe a "regular" school would figure "a few fall through the cracks, oh well". This school will not let her fall through the cracks, but I am not so sure its best for her self esteem either. I will try that explosive child book, I have seen it on AMazon. She is on wait list for Occupational Therapist (OT), should start within the next 2 weeks. The Occupational Therapist (OT) seemed to think that, along with changes at home, will help tremendously. I hope so!

SearchingforRainbows you sound like me, researching every disorder on earth, ad nauseum, hubby so busy with work and plus he is in his last few college classes too. Plus we have a very argumentative 15yo who is gifted and maybe too smart for his own good (he would be a great lawyer!).

The figit bag is a good idea. The Occupational Therapist (OT) also recommended having her DS/nintendogs with headphones ready in the car when I get her from school, in addition to her snack and juice box. That way she can decompress in her own little controlled world and maybe wont meltdown. I also ordered kid sized earplugs, they haven't arrived yet, but she sounds interested in using them because she really doesn't like noise. The visual cards are a good idea, she seems to be a visual learner. She is also a picky eater, but no pickier than me. Thats half the problem I think, all these quirks of hers (no naps after about 18 months, not falling asleep until 10:00pm, having only 10 foods she will eat)are things that I did/do, so I assumed it was genetics, which it was, I just didn't realize it was a disorder. I think this would all be so much easier for me to deal with if I weren't also auditory defensive because when she starts her tantrums I literally feel like I will go nuts, so I have to stuff earplugs in my ears which makes her really mad. We must be quite a sight, someday I may even chuckle about it. I think my husbands reactions are stress/work related plus the sheer unpleasantness of being around a screaming/wailing child. How can they make so much noise if noise bothers them so much anyway?

As far as opting out, he knows I can deal with her better and that she responds better to me, so if he is overwhlmed he just walks away and knows I will step in. It makes me angry but also I wish I could do the same thing sometimes, my own mother even hands her off to me and its her only granddaughter. As I said, we are just overwhelmed, both of us.

But now I am looking forward to the Occupational Therapist (OT) therapy even more, I so want for her to have a happy productive life. Thank you all for helping, and any additional comments are welcome. I feel much better now.

 

[buddy]

The Occupational Therapist (OT) also recommended having her DS/nintendogs with headphones ready in the car when I get her from school, in addition to her snack and juice box. That way she can decompress in her own little controlled world and maybe wont meltdown

been there done that and STILL doing that... a LIFE saver!!!

 

[InsaneCdn]

Just a side-comment on medications... I'm not sure where they fit at all with sensory processing disorder (SPD), that will be up to others to comment on.
We found that once we had the right dxes, it was easier to find the right medications (but that isn't everyone's experience... sometimes finding the right medications is impossible). And the RIGHT medication will be... right chemical composition in the right delivery mechanism with the right timing and the right dosage for YOUR CHILD. If you get there? they are NOT "drugged".

Me + 2 kids are all on stims - ADHD. We don't feel any different with the medications. But we do ACT different. The medications somehow balance some other chemical or hormone in our brains... giving us enough time to "think" before we speak/act. The medications slow down our brain enough that we become more like those around us... so, on medications, we blend in better (and are easier to live with)... it's really only a problem if we don't have them. Know what I mean??

But - in my opinion - you're still too early on that path of figuring things out, to really be jumping into medications yet.

 

[confuzzled]

it may be very worth requesting a full evaluation from your school to include educational, psychological, social, Occupational Therapist (OT), Speech and perhaps audiological to see if there are any hidden learning issues or other things that impact her education.

you mention math as a meltdown trigger--and you mention the school keeps telling you to work with her as she's falling behind (behind WHAT at 6??).

i would request in writing to start the process for formal assessment asap. it may give you some more insight as to whats happening with your child...and what services she might need in place to help her.

i have no words of wisdom on the husband front---my situation is similar in that my husband doesnt want to know either, but we have that understanding that i handle kid stuff, he handles the paycheck. once in a blue moon we meet in the middle, lol. i can tell you that my husband told me once that he was SO overwhelmed with work stuff and me and my anxiety mouth dumping the whole days worth of kid minutia on him the.second.he.walked.in that he felt like he was going to crack. in a moment of clarity, i got what he meant and i try to let him unwind and only tell him the major stuff.

hope that helps

 

[Buglover]

OMG confuzzled that is exactly what husband said to me today, almost verbatim. "The minute I walk in the door I hear every single stressful thing that happened to you, that the kids did, etc. Let me unwind for a few minutes!" Hmmmm maybe there is a pattern here....

At age 6, 1st grade, they have to memorize all the single digit addition, subtraction, they have to graph things, do skip counting (3, 6, 9, 12, 15 etc), starting fractions, telling time, know hundreds/tens/ones places, count backwards, greater than/less than, and do word problems like "If Joe plays with Sue for three hours and they start at noon when will he go home". It is way more than I did in 1st grade. She is way ahead in reading (6th grade level or above, last night she read adult Mercedes Lackey sci-fi to me and only needed help with the characters' bizarre names. She did complain that there were no pictures). They kept telling me she was too young (August birthday) and I should have her redo Kindergarten, now I think the sensory processing disorder (SPD) and ???? are affecting her school. Not too sure I am thrilled with her school, we may send her to her regular neighborhood school next year where they do ability grouping. At least she would be in the highest reading group which would make her feel good. If we repeated a grade she would be about 9th grade reading in 1st grade next year, the rate she is going. It seems so bizarre I am just confused. I know all kids are better at a few subjects than others but how could there be such a huge difference in her reading and math? Plus she does math fine at home for me, she just makes me sit next to her or on the floor while she does it. I don't help, I just sit there. So what happens at school that she shuts down and wont perform?

If I did request an evaluation through the school what would that entail? I was told by the Occupational Therapist (OT) at our Childrens Hospital that the people who evaluate through the schools are often very overworked, not necessarily experts at noticing fine details that need to be noticed. She rec'd having her done through our own insurance company and using the children's hospital. I am so frustrated with the school, honestly, I don't know if its them or the fact that my daughter has undx disorders or something.

 

[Buglover]

Insane I iwll keep that in mind. I will give the Occupational Therapist (OT) a chance to work magic on her first, then start considering medications if I need them.

 

[confuzzled]

::hurrying around making "healthy, lent worthy, allergy safe" dinner::

so i'll be back later--others will answer some of your stuff too.

but bug--consider this your lightbulb moment with husband. i'm not kidding, when mine came on, it was a *complete* gamechanger--we are together 25 years, married 20 this may. i STILL have to consciously make that decision to not talk about kidstuff--it doesnt come naturally to me. (i'd want to know every silly thing--it doesnt occur to me that *he* doesnt give a ratz azz that X happened and mrs Y said Z and do YOU BELIEVE that woman and can you imagine difficult child carried on for over an hour because she said the dinner i was cooking stinks and so on and so on.....and he REALLY doesnt care the second he walks in the door--he has work pressures and problems too).

vent here. tell US that she threw a whomping meltdown over word problems today, in detail. we know, we get it, we'll listen.

and hopefully the husband part will get so much better.

bbl!

 

[tiredmommy]

Hello and welcome! My difficult child, Duckie, has sensory processing disorder (SPD) too. A quick question about math: does she do okay on tests? You wrote that she does okay at home but needs you close by, right? I wonder if this is a schedule issue or seating arrangement issue that is making it impossible for her to concentrate. Duckie has a hard time with self-calming after an activity where her classmates get whipped up and can be a barrier to learning. She also has difficulty when seated near a fidgety or disruptive student.

But that being said, it is very concerning that there is such an apparent discrepancy between her reading and math skills. I would definitely advise you to have your daughter evaluated for a possible learning disability.

 

[buddy]

If I did request an evaluation through the school what would that entail? I was told by the Occupational Therapist (OT) at our Childrens Hospital that the people who evaluate through the schools are often very overworked, not necessarily experts at noticing fine details that need to be noticed. She rec'd having her done through our own insurance company and using the children's hospital. I am so frustrated with the school, honestly, I don't know if its them or the fact that my daughter has undx disorders or something.

If someone is an OTR or an Speech Language Pathologist (SLP) they have the exact same degree and training as any other OTR and Speech Language Pathologist (SLP). THe universities do not separate school therapists and hospital/clinical therapists, smile. That said, there are different criteria for qualification to receive services and in some cases it works in favor of the kid in a school in others in a clinical setting. Insurance has guidelines and limits and so therapists have to word things carefully and of course the dr has to refer in the first place. OF course in any setting, school or clinical there are good guys and bad guys.

In the schools, you have set qualification criteria but once in, there is no limit, the team decides what and how much of the service they need (that can be no fun to fight for too, just ends up being very individual based on the district and staff). I had a mom tell me once she wanted me to consult with her clinical Speech Language Pathologist (SLP) because she was a REAL speech pathologist. So, she gave me the name, and it was my best friend from graduate school, lol. We not only went to school together but we had the same advisor and area of concentration! She helped me get through the scientific/academic stuff and I was more clinically oriented so helped her with how to work with clients, make up the therapy lessons etc. We were a good team. I said SURE and took the name and laughed to myself.

The schools are mandated to do the testing. It really depends on your district and how good the individual psychs, teachers, therapists are in how good of a job they do. Some are wonderful and some just do the bare minimum. That is why you need to be an active part of the evaluation team. they have to present you with a list of proposed instruments (tests, checklists, record reviews, interviews, observations, etc... then bring the proposal here and we can give you our opinions and you can ask others you know and then they do the assessment.

When you write the request to evaluate ask for a complete evaluation for ability, achievement, language/communication, motor, sensory, behavior, etc. I just posted a link yesterday or the day before that lead to a sample evaluation request letter. It is at pacer.org (doesn't matter the state, it is a federal mandate for childfind that parents can ask for referrals). They can deny but you will have rights and will see how to appeal and if you dont like the results, then you have a right to an independent evaluation at their expense. That info on your rights too, will be given in writing.

TeDo and a few others are good at saying it in simplistic words. http://www.pacer.org/publications/pdfs/ALL10.pdf

http://www.pacer.org/legislation/idea/pdf/idea2004parentguide.pdf I think the sample letter is on page 89

 

[InsaneCdn]

Generally, most of us find it pays to use BOTH school and other methods.
There are some things that school is better at picking up on ... especially LDs, in our experience, and they have more exposure to the child in a social setting, so may have more to say about social skills.
But... the other side is also important. We needed both, to get to where we needed to go.

 

[buddy]

Generally, most of us find it pays to use BOTH school and other methods.
There are some things that school is better at picking up on ... especially LDs, in our experience, and they have more exposure to the child in a social setting, so may have more to say about social skills.
But... the other side is also important. We needed both, to get to where we needed to go.

me too, I have always done both. I have always encouraged families I worked with to do both too.

 

[Buglover]

Confuzzled: we are 22 years, married 20 years in August. I figure if it has lasted this long it would be stupid to give up now!
Tiredmommy: she crashes and burns on tests, it makes me feel so bad for her. They have her in the least distracting seat in the room, and have a desk set up in the hall if she gets too distracted, but that is not enough. They also let her chew gum (relieves tension) and send her to the office if she needs to destress/quiet time. She always complains that there is too much noise, the squeaking of peoples shoes on the gym floor hurts her ears (the gym is halfway across the school! and it still hurts her ears!) So the distractions are very bad for her when she is struggling, although she reads very well at school. I have earplugs coming (Max plugs or something, for kids, from Ebay). She actually got up and walked out of music because of "all that stupid noise from the cymbal" and her teacher couldn't find her for about 15 minutes! I could not believe she did that, she is never like that unless she is extremely agitated by a sound. I did have her hearing tested at a real ENT, he said her hearing was "extremely good" well I already knew that
ENT doctor said it is virtually impossible to determine what could be wrong with her hearing, and most likely it is neurological/brain stem or whatever, so her ears are not the problem, her nervous system is. From what I understand it is like a fire alarm going off in their head when they hear sounds like that (squeaking shoes, trumpets, cymbals, and auto flush toilets are a bleeping nightmare in those tiled bathrooms).

Buddy and Insane: I will probably have her evaluated for learning disabilities, I just want to try Occupational Therapist (OT) first and see if that helps her with the noise distractions.