Help! DD5 Just Diagnosed with SPD and things are getting worse not better

[GraceLuvsWDW]

My Daughter who just turned 5 has had social and developmental probs since she was around 1. She never has socialized with peers well, has never acclimated to school setting (still cries when dropped off), is extremely fearful of strange situations or new people, and has balance and coordination problems. She also had delayed speech. I have asked her Pediatrician at every visit when she is unable to allow them to examine her (due to anxiety and shyness) for help. Finally, finally I was referred to a Developmental Specialist. She tested her for 2.5 hrs and then referred her for the ADOS, which she scored a two in reciprocal communication and therefore was deemed non-autistic. The Dev Ped diagnosed her with Developmental Coordination Disorder and Anxiety and referred us to an Ot. The Ot tested her and has diagnosed her with Sensory Processing Disorder due to -2.5 and greater scores on the Balcones Screening.
She has been in 0T for 4 weeks and seems to be getting worse. She is refusing to go to school altogether. She cries the entire time she is there and the teachers claim she is unable to be redirected. Her anxiety is getting worse. She hangs on me and will not go anywhere without me, including to the bathroom. Many times a day she "panics" when I try to talk to her about going somewhere without me.
I'm starting to lose it! I am depressed wondering what I did/do wrong. My family is unsupportive. I've tried searching for a forum for other parents in this situation and can't find one. I feel really lost and alone. Friends and neighbors feel sorry for me and don't know what to say.
Anyone been through this? Anyone know where I can go for help/understanding? Will OT help with this? They prescribed meds for the anxiety and say to keep taking them, that they will eventually help but they are not working!
Any suggestions? Thanks for your help!

 

[KirstenB]

First off, Our youngest has SPD, specifically auditory. She's nearly 3 and has low tone, and speech delays. She'll be starting special ed preschool in the fall. ONe thing that helps her a lot, is intense physical activity. We spent a small fortune on a new wooden playset for the backyard, adn we spend a lot of time on the swing. She also likes the pool, so we go to the Y year-round. Just me wrestling with her, and swinging her in my arms helps too. All of these things seem to help "center" her body. It seems to stimulate her, but somehow reassure her at the same time. Weird, I know, but it works.

I realize what works for one kid doesn't work for another. I know your daughter isn't autistic, but autismspeaks.org has discussion boards. ASD kids have sensory issues, so it's a good place to ask sensory-related questions. I unfortunately haven't seen a website for SPD, although one probably exists.

 

[bookwormde]

I guess I am confused, you said she scored a 2 on reciprocal communication (what specific test and what is the scale range) and that eliminated an autism diagnosis. While that might have some bearing on a “classic” autism diagnosis it certainly would not preclude it and would not rule out much of the other autism spectrum’s diagnosises (HFA or Aspersers etc.). To be quite blunt it sound like your clinicians are not adequately trained and experienced to make an Autism diagnosis one way or the other.

She was a little young (at 1) to develop the level of anxiety, which you describe but it is not unheard of.

There is a lot more information needed about your child to give you much more than these brief thoughts.

There are a lot of people who are active on these threads who have children with similar situations so I am sure they will chime in.

I have an Aspergers DS9 and much of your limited description sound very familiar.

bookwormde

 

[GraceLuvsWDW]

Thank you both for your replys. My daughter is very active, constantly moving and doesn't nap and has trouble falling aslep. I don't know how she could get More activity-she's very active. Some people have said holding her tight might help and she does like that but it seems the minute I stop holding her tight she is back to being anxious and insecure. I cannot see why she is anxious and insecure I have always given lots and lots of attention, one on one time, and have never excluded her.

When I reported that she scored a two on the Recipocal (sorry I meant Social Interaction not Communiction )portion of the ADOS, I was informed that the scale is 1-10, where 4 and over is Spectrum, 6 and over is Autism. She was tested by a highly qualified specialist who ONLY does Austism Testing. She scored a zero in Commuincation and her over all total was 2 with the spectrum cutoff being 8.

Her Ped says she has many Autistic traits and sees some children that are Autistic-like but not on the spectrum. This, I guss, is due to the Sensory issues which Autistic children also have.

As I said, I do not know very much about it. I am a very analytical person and I always try to "fix" the problems. My frustration is this can't be "fixed". Her OT recommended that I stop fearing/questioning the diagnosis and sort of "embrace it" so to speak. I need to model to her that she is not "broken" just different and that's okay. But how do I do that when I am mourning inside and unable to figure out which way to go?????

 

[a1tinkfans]

Thank you both for your replys. My daughter is very active, constantly moving and doesn't nap and has trouble falling aslep. I don't know how she could get More activity-she's very active. Some people have said holding her tight might help and she does like that but it seems the minute I stop holding her tight she is back to being anxious and insecure. I cannot see why she is anxious and insecure I have always given lots and lots of attention, one on one time, and have never excluded her.

When I reported that she scored a two on the Recipocal (sorry I meant Social Interaction not Communiction )portion of the ADOS, I was informed that the scale is 1-10, where 4 and over is Spectrum, 6 and over is Autism. She was tested by a highly qualified specialist who ONLY does Austism Testing. She scored a zero in Commuincation and her over all total was 2 with the spectrum cutoff being 8.

Her Ped says she has many Autistic traits and sees some children that are Autistic-like but not on the spectrum. This, I guss, is due to the Sensory issues which Autistic children also have.

As I said, I do not know very much about it. I am a very analytical person and I always try to "fix" the problems. My frustration is this can't be "fixed". Her OT recommended that I stop fearing/questioning the diagnosis and sort of "embrace it" so to speak. I need to model to her that she is not "broken" just different and that's okay. But how do I do that when I am mourning inside and unable to figure out which way to go?????

I just want to say, YOU DID NOTHING WRONG, stop berating yourself, please. We all try so hard to be the perfect parents for our children and then feel we have somehow failed them when we cannot "fix" it.
Your strength WILL get you thru this. She has YOU as her support and mentor and YOU with unconditional love.
I too see MANY things you are describing as common for kids on the Autism spectrum, namely Asperger Syndrome. The "centering" you are talking about can be a really tight hug, it is a way to "calm her nerves" so to speak. In addition, many kids with AS, LOVE swings and trampolines and repetitive motion. It allows them to "get out the tension" and it can do wonders. They actually have "brushing techniques" with a soft bristle brush on arms up and down softly to calm down. I know from personal experience that this is all so freightening but there is HELP out there and you'll need to be the best advocate for your child that you can be. You have obviously taken the first steps, seeing a doctor, asking others, the DIS members. You need to "go with your gut" on this, truly, if you feel there is More to learn about anything, keep Asking and don't be afraid to advocate for your child.
Actually the first time my child started to "flap" his arms, another typical manifestation for "de-stressing" it was at Disney, too much stimulation we later learned. My DH and I were scared to death and spent more time at the quiet pool and relaxed rather than running rampant thru the parks. 2000 miles from home and we just stayed level headed (till we got home) and made the best of it. So scary.
Anyway, I just want to send your way and say that I will keep both you and your precious daughter in my prayers and wish you "good news" so that you can figure out what exactly can be done to alleviate her symptoms as best as possible. We went to sensory integration classes to "de-sensitize" him for social situations (OT) including school, we also did socialization classes privately in a program I learned about thru Schneiders Childrens Hospital, a local specialized childrens hospital.
As an update, my DS is now 14, honor student, amazing bright child, has been fully integrated in regular (and many advanced) classes, YES he is more limited in "friends" less social then many kids his age, still does not make the best eye contact and is often less than organized (thats putting it mildly) but he is self reliant, intelligent, articulate and funny, an AWESOME kid!
Please keep us updated on what is happening, we care!!

 

[bookwormde]

The additional information helps. I would suggest that you get a copy of Tony Attwood
The Complete Guide to Aspergers C/2007 (available on Amazon for about $25). Even if she never meets the formal diagnosis criteria it will be helpful to you.

Again I question the training and experience of the clinician doing the diagnosis since no one characteristic is disqualifying under DSM-IV Aspergers section. Also girls are much better at developing “acting skills” which can camouflage the lack of innate social abilities to all but the most experience clinicians. Also if she is very smart she may have self-developed intellectual replacements for the innate skills. What the clinician should really be looking for is the process and efforts needed in complex social environments and the associated increase in anxiety levels that this triggers.

Yes she does not need “fixed”, she will just need to develop intellectual alternatives for some of the missing innate abilities. She will also have several abilities, which neurotypical children do not have which are great gift if appropriately cultivated

bookwormde

 

[MarieS]

I belong to a listserv for parents of kids with sensory issues. See below. You might find some some help there. My son has CP and other medical issues as well as sensory problems. His main issues are tactile and auditory. In my experience kids with neurological issues can often have sensory problems. Our therapist gave us a sensory diet to implement at home and school. This was basically a list of ideas to try. It took some time to find out what works, but he is doing much better than before. Another suggestion would be to find out all you can about sensory issues through books ( ie Out of Sync Child by Kranowitz, Sensational Kids by Miller), listservs, workshops ( I attended one by Carol Stock Kranowitz that was wonderful) etc. For me getting as much info as I could was a big help. I always feel better with a plan of action. I don't have any experience with the anxiety issues you talked about but hopefully someone can help.


I know it's discouraging, but you are moving in the right direction with seeking help for a diagnosis and treatment. Hang in there!

Marie

http://health.groups.yahoo.com/group/sensoryintegrationgroup/

 

[GraceLuvsWDW]

I just have to say-this is why I love the Dis so much! There are always those who are willing to help and lend an ear. Thank you!

I think I am so out of sorts tonight because today she had a program at our local theatre. I had signed her up for a camp which she seemed very excited to be involved in. She had problems each day and the teachers were not experienced with dealing with atypical children. They did give her a small part in the production as a fairy with no lines and limited time on stage. She was excited to be a part of it. The dress rehearsal went well, she seemed okay but when the production started the teacher was out on stage with her while she was crying. She (after about 2 minutes) ran crying off stage in front of the audience and wanted to leave the theatre immediately. It's not the embarassment that this happened in public that bothers me-it's that she so wanted to do it, was very excited and the anxiety took over. It's almost as if she is a typical 5 yo girl trapped in a body full of fear, anxiety, and turmoil. It is so disheartening to me! I wonder if I should stop trying to integrate her "normally"???

She lives almost constantly in fear and I try to reassure her at all times. I can't get gas because she is afraid to stay in the car while I am pumping the gas. How do you express all of these things appropriately to your clinician? I feel as though now we are in the "system" of medication and therapy and the one size fits all approach.

Am I in denial when I feel none of the diagnoses I read about fit her? As you state with Asperger's-she lacks many of the classic traits. She makes great eye contact, she is interactive, she doesn't script or repeat things, she has a great imagination. She WANTS so much to please and do things but something, which I don't know what it is, stops her.

I am currently reading The Out of Sync Child and it is very eye opening. I see her in many of the traits described. Then again she lacks so many of the traits. It's not that she hates certain textures or tastes, she simply refuses food she loved yesterday without knowing why or her skin just itches for no reason at all (not due to certain fabrics). She is afraid that everything is hot and seems to have a fascination with that so I put ice cubes on all food that has been cooked.

Her OT seems to allude to the idea to prepare myself, that these could be "symptoms" of a condition we have not uncovered yet. The Ped says the medication should help the anxiety and underlying issues might rear their ugly heads. This does not help my state of mind.

I am so confused. I am not an anxious person, I usually go with the flow for the most part and like to have fun. We go to Disney as often as a good deal comes along. We have a trip planned in Sept which I am now starting to wonder if it's a good idea with all of this going on. She loves Disney, partly because I think it's just us 100% with no school, none of her usual "fears" and she relaxes, if you would believe that! My family says "do you really think it's wise to go to Disney NOW?"

Thanks so much guys for your warm hearted support. Isn't it strange that I feel so much better with your feedback, people I don't even know? I hope you know you've helped me just by listening! Thanks!

 

[KirstenB]

Have you tried a weighted vest? Or very snug-fitting clothes? You probably have, but just wanted to toss that out there?

 

[belle&beast]

I was going to recommend the Out of Sync Child, so you are ahead of me there. I am a preschool SLP and have worked in EI and have seen many children benefit from this philosophy.

I work very closely with OTs in our program and I have a few things for you to ask your OT about a sensory diet you can use at home daily:
1. It sounds like the deep pressure really helps to modulate her. Have you ever tried compression vests or garments?
2. Many of our kids use listening therapy to help calm them. Would this be a consideration?
3. What about vestibular therapy or spinning? Some kids need this specific program to help them function better.
4. Are you using any type of deep pressure brushing or joint compression?

These things are parts of sensory diets we integrate with individual children in our preschool program daily. Each item has a purpose and I am not qualified to tell you what will help you DD, but it would be worth asking your OT to design a specific sensory diet.

Another thing you can do at home is be certain she has lots of different sensory opportunites during play. My favorite is cornstarch and water. It is a great consistency! Playdoh, shaving cream, sand, water, dry beans and rice, pudding, even instant potato flakes are great for sensory play.

 

[GraceLuvsWDW]

I have just started reading The Out of Sync Child. I am not familiar with the weighted vest or any of the other "sensory diet" items you mention. I'll ask the OT about these. How do you find out if these work before you go and spend hundreds of dollars on therapeutic items? Does the OT determine what works for her and what doesn't?

I live in a very small town of appx 60,000. No schools exists like the ones you mention. In that case. what do you recommend? I have had her at a very good school using the Emmilio Reggio philosophy of teaching and she does wll there, especially because the teachers are very good and pay her special attention. During the summer it is hard to find anything! Should I go into each new school situation informing them of her diagnosis? I suppose I really need to so they don't think she is just a very difficult child, which is how we have lived up until now.

 

[KirstenB]

A couple of thoughts:

Is your daughter in public school or private?

If she's in public school, does she receive OT there, or did you hire a private OT?

Around here, the public schools have weighted vests, special swings, etc, but it's for kids with an IEP. Our youngest will start special ed preschool in the fall, and she'll have all these things in her classroom. The teachers and aides are trained in the use of them, and the OT will visit the classroom.

Either Time magazine or Newsweek ran an article about 3-4 mths ago about a private school in Texas, that specialized in kids with Sensory issues. I remember being envious, just reading about it. I believe the name of the school had "Star" somewhere in it. Maybe someone else here read the same thing, but has a better memory than me!

 

[MarieS]

For us, we tried many of the things in my son's sensory diet during our private OT sessions. We then incorporated these into our home and school program. Our school system OT has not been helpful with sensory needs, but my son's special ed teacher has been wonderful in implementing ideas. She has dealt with many kids with autism and sensory issues and knows

Has your OT mentioned specific areas that your daughter needs help with? If you know what areas to target you can start the sensory diet with ideas in those areas. The book Out of Sync Child Has Fun has lots of ideas. I also got many ideas from my listerv. My son has a weighted blanket that someone made for me, but if you or someone you know can sew you can find instructions on how to make the vests or blankets yourselves. Our OT had some therapeutic listening CD's that we were able to try before buying. We actually used a different therapist who is trained in The Listening Program. http://www.thelisteningprogram.com/ It wasn't cheap, but we own the program and headphones and can redo the program when needed. We have also had success with joint compression and swinging.

If these issues are impacting her school performance than I think you do need to mention this. If she goes to a public school and has an IEP, you can have things written into the IEP that help. For example, I know kids who are allowed to chew on chewy tubes during class or have a squeeze ball. I know another student who is allowed breaks to go jump on a trampoline. My son is in a self contained class most of the day and he has vibrating toys ( the biggest thing that calms him--sometimes I worry he spends too much time with these toys) that he uses to calm and organize. The room also has a quiet corner where he can relax and get a break from the sensory overload.

In my experience, sensory problems can take a while to sort out but it does get better. Once we found ideas that worked and did them consistently my son was a lot calmer. During busy or stressful times I know that we need to be extra sure he gets what he needs or there will be a meltdown.

You mentioned your daughter's experience with the local theatre. My son had a big problem when he was 3 and 4 participating in preschool programs. The minute he got out on stage he got very upset and started crying. A couple of years later he did much better. In addition to getting his sensory needs under control, we did a much better job of preparing him for what was going to happen. My son doesn't read so we make picture books--similar to social stories-- showing the steps of whatever we are doing. I think this can help reduce anxiety and help kids know what's coming next. So just take baby steps and maybe prepare a little differently and hopefully in time things will improve.

 

[GraceLuvsWDW]

Thank you for your responses. I have not started any of the things you guys recommend-we've only just begun OT. She WAS in a private school and her diagnosis came after the end of the school year. Now she's in a preschool day camp-no special needs help at all.
Her Ot reports she has delayed fine motor skills (scattered to 42 months). She had probelms cutting with scissors, putting a paper clip on paper, and stringing beads. Her finger and hand strenth are fair. She noted disturbances on Proprioception-when moving in space-poor, tracking-poor, excessive eye blinks, loses of target at midline, eyes darting at midline, unable to separate eyes and head for tracking. Gross motor skills-fair. Cannot hop on one foot, can't walk the balance beam, poor balance, low tone throughout body, unable to perform tasks rquiring strength and motor planning. The report states waknesses in tactil sensitivity, low energy/weaknss, visual/auditory sensitivity and under responsive as well as seeking sensation. The balcones scores indicated poor sensory processing in all areas tested.
No one has even mentioned weighted vests, sensory diet, etc etc to me except for the books they recommended to me. The Ot gives us "homework" each week, mainly to improve her strength. Sounds to me like I have a lot to learn and will defintely ask these questions. Thanks for all of your help!

 

[ecki]

Just glanced through the earlier responses, but I thought I'd tell you our experiences with my older 6 year old DD. From about age 1, my SIL (who is a speech pathologist and works with special needs kids, including early intervention) kept saying that she was "on the edge of normal". She'd have such anxiety attacks, sometimes to the point of passing out. She was also sensory seeking when it came to touching things (she wore holes in all her pillow corners because she would rub them between her fingers for hours) and vestibular movement, but sensory defensive when it came to sounds (couldn't even go to WalMart because of the noise of the lights).

She had constant meltdowns. She went to a private Montessori school for preschool through Kindy and at the beginning she would have 20 - 30 meltdowns a DAY, some lasting up to 20 minutes.

At age 3 she was diagnosed with PDD-NOS, that's basically when you have some, but not all, signs of autism. She had zero social skills, would spin and pace constantly, would just say weird phrases out of the blue, completely out of context (her teacher asked "what animals are awake at night" and she answered "I went to Chuck E Cheese" )

We started OT with a person who was trained in Sensory Integration. A lot of OT's do NOT have this training, so it's essesntial that they have it! We did a lot of what was mentioned about, deep pressure, joint compression, brushing, etc. I really think it helped a lot.

During summer camp last summer she cried every day because she was afraid to do the activities (gymnastics) or she'd be upset that the other campers could do them but she couldn't. I thought they were going to kick her out. We had to explain to the camp director her issues and they told her she didn't have to participate in anything that she didn't want to.

This year she started public school for 1st grade. She was so anxious and would cry every day. Her developmental pediatrician put her on Prozac and it did wonders. But it did take about 6 weeks to work and we did have to increase the initial dosage for it to be effective.

Now she's nearly a "normal" child, just a bit "quirky". She doesn't understand the whole social nuances of 1st grade cliques, but she does have a best friend now. I though that would never happen! She'll have a conversation with people now, instead of looking at the floor trying not to cry.

Anyway, just wanted to say hang in there. You will find the key to unlock your child. I was so terrified by DD's behavior when she was younger. I cried often wondering how she'll be able to make her way in the world. But now she's about as fine as the rest of us.

 

[GraceLuvsWDW]

ecki, thank you thank you thank you!
It is only through stories like these that I don't feel so lost and confused!
Your daughter's stories sound very much like my daughter-I am wondering why our Ped (who is very specialized in Developmental Disorders) didn't mention PDD-NOS??? I am confused about all of the disorders!
The book I am reading The Out of Sync Child is very good. I am almost half way through. I am marking up the book, noting areas where it sounds exactly like my daughter. What to do with the information? I don't know. You don't want to be the mom that calls the Dr office everyday. I do have opportunity to speak with the OT every week and she is the one who diagnosed the SPD. I will talk to her about the Sensory Diet things. Perhaps she senses that I am just trying to grasp the idea of this and doesn't want to bombard me with everything too quickly.
I check on my daughter every other hour or so at her day camp and she seems to be doing fine today. She awoke this am crying and begging me not to take her. Then I drop her off to a teacher who doesn't seem too sympathetic and I sit outside the door and listen to her cry and tantrum until I pull myself away to try to get some work done. It is so difficult for me to see her hysteria and tantrums, it breaks my heart.
I am starting to get my head around this, I guess it takes time and I want to send much gratitude for all of your kind comments. It has done wonders for me, REALLY!
I will keep hoping about the meds. She is not on Prozac as you state but it is another SSRI in the same "family". We have stepped up the dosage once but it steps up again this Wednesday. We started at a .5ml dose and are stepping up .5 every 2 weeks.

 

[ireland_nicole]

I don't have much to add, except that I also understand your confusion and feelings of feeling overwhelmed and isolated; I agree w/ the pp's. Many things like weighted vests you can make yourself, so every single thing doesn't necessarily need to be a huge expense. This is going to be trial and error for ya'll; if one thing doesn't work, try something else. At least you'll know one thing that doesn't work, and that is helpful too. You are definitely not alone, and we all start out feeling like we don't know anything. That's o.k. You're learning.
Nicole

 

[belle&beast]

I think that since you are just beginning your DD's OT, you may be right that she is trying not to bombard you. But, be sure to be assertive with her regarding the sensory input therapy. Fine motor skills and practice to improve them are fairly easy to explain to a parent and the changes can be seen easily, so that may be where she is starting. Please don't be afraid to ask her or your pediatrician when you have questions. As a therapist, I welcome input and questions from parents- they know their children best and when we have a team approach, the progress is so much faster!

 

[ecki]

A lot of sensory stuff you can do on your own as just play. Like a "sandwich" where you put your kid between 2 couch cushions and squish. Or a "hot dog" where you roll your kid in a blanket. My DD also loved the Shape Changer you can get on Oriental Trading. I usually look at the therapy catalogs and see what they have in there and buy the stuff somewhere else. You can get tons of squishy and noisy things at the Dollar Store.

 

[GraceLuvsWDW]

Just an update-My daughter's OT prescribed brushing technique followed by joint compressions every 2 hours. We've been doing it since wednesday. She loves it and actually brings me the brush and asks me to brush her. This week she dressed herself without prompting (she's never done that before!) and has even brushed her own hair. These are very positive things!
I talked to the OT about our trip in Sept planned for WDW for 1 week. We have never gone for a whole week before. She said she thinks she'd be fine-she talked to me about how the spinning of the rides and different sensory input is actually good for her. I am planning my itinerary in earnest now and am planning 2-3 hour breaks each afternoon. She won't nap but perhaps the rest will be good enough. What do you guys do to ward off episodes and meltdowns?
She won't stand in lines. I usually hold her while we are in line which is a pain in the back! Is there a way to use a stroller in the queues? I know no one likes to discuss thse things openly on the boards to prevent anauthorized use so feel free to PM me with any tips for dealing with lines (she won't use gameboy or leapfrog-it doesn't hold her attention). I am thinking the lines won't be too long in mid-Sept but any tips would be helpful.
Thanks!