Looking for Support/advice with Sensory Processing Disorders

Hi K.,

Have you been to an OT clinic or anything that might be able to give you suggestions on how to handle this? I don't have the names of any in front of me but I can get them to you if you would like. Just let me know.

C.

K... I am no pro by any means, but in regards to the reading, have you tried books on tape, they are available through the library. D

My 4 1/2 year old son was diagnosed a year ago with this disorder.
I highly suggest that both you and your husband read the book - The Out Of Sync Child, which is the "bible" for families who are going through this disorder. Also, not knowing where you live, contact the Abilities Center in the Commerce area. They specialize in therapies for all types of problems. Also through your school system you can get the help of an Occupational Therapist for free. Have them do up an IEP (individualized education plan). They are the ones you want working with your child for SID. I hope this helps you. This is a very frustrating disorder because it can change daily! They can hate something loud one day and then can't touch something another day. You never know what will set them off. Make sure your husband is involved and maybe he'll see that this is real and that it is not a pill that will help, but therapy and lots of understanding. My thoughts are with you.

K.,
Hopefully I'm not telling you something you already know but I have two things to recommend. There is a great therapy place for SPD in Walled Lake called The Abilities Center. They are very knowledgeable there and provide all kinds of services, including parent seminars on different subjects related to this. Also, my sister-in-law is an occupational therapist who directed me to a great magazine that's all about SPD. The website is ____@____.com. Maybe this can give you a place to start.

How would you and your husband feel about taking maybe some "piano" lessons, arts & crafts, gymnastics or martial arts (karate) classes? Two to three days a week and/or weekends? This may help things a little with the disruptive behavior she is causing for the family and it can help to exert a little off for her as well. Talk to a professional counselor or seek advise from the family doctor first. Disorders of "anykind" must always be consulted with a physician.

We have a daughter who was diagnosed when she was three with SPD. She was in a program at the time through KRESA for a different issue and they were very helpful to us, giving us some great ideas and ways to help her change her environment to help her cope. I would be happy to share some of those with you. Some of the issues you are talking about we have experienced. We have been implementing the changes and have seen a huge difference in just over a year, some of the changes were pretty immediate. There are some ways we have had to modify our environment and some areas we work around, but for us, understanding that she was not deliberately defying us with her behavior was a huge part for us of learning to accept and eventually help her work through some of the issues. You can email me at ____@____.com if you would like to talk further.

Dear K.,
This is hard. I have two kids that have high functioning autism and this is what it is like. My son totally freaks after school. I usually only have down time planned the hour after school. Also, when things are not going well or even if they are things at school he is upset about and can't verbalize he is OK at school then all h... breaks loose at home. When things are going good at school he is better after school. Some things I do with him is let him watch his favorite movie. Play one of his quiet games with him. And then work on his anger control issues. He also sees an excellant councelor who only works with kids like him.
As for the sensory issues I do things like trun his socks inside out. My daughter will only wear undies that have wide elastic on the top they are softer. I find what works and go with it. Try using weighted blankests too they are great. My mom makes them. I have the fleece ones the kids like them the best. Try to find clothes that she likes and stick with it. This year Kohls, Penny's and Old Navy had lots of elastic waist pants for girls. My daughter will Not wear jeans either. She is eight. I know it is hard but you have to pick you battles. And then you have to be OK with that. You take care! As for your hubby takeing my hubby to meetings about my kids at school and to counceling appointments. Hang in there!
M.

Good Morning K.,

I have a son who is 16 now with Aspergers and he did exactly the same things your daughter is doing. Thing is they try so hard to hold it together at school that they release when they get home. It can be very disruptive and what I did was when my son came home. Was direct him to go to his room if he was upset and chill for a bit. I also would talk with him if something may have happened in his day to cause it. I would not pressure him to start his homework right away, I would try Magnesium and b12 to help your daughter be more calm. Make sure you talk with her and see if something is going on to cause these meltdowns.

My husband was the same way and it isn't easy to get them to understand. Men so often just want to fix the problem and move forward. All the emotional stuff I feel is to much for them. Do your research and show him , they like to see concrete information.

I can tell you this, my son is now at home schooling and he has changed 100%. He has more control and is calmer. His work is much better and even though it wasn't our choice to school him. He is a totally different kid.

Your daughter sounds very similar to my daughter. She does not have the sensory problem, but the rest is my daughter to a tee. When we went to conferences they would talk about how great our girl was and we'd almost want to ask if they were talking about the correct Samantha. She would actually some times come home and say "I've been good all day, I just can't take it anymore". She is also the middle child. I have found two things have been extremely helpful 1)We talked to the school counselor. He ended up putting her in a group setion once a week that discussed anger management, dealing with feelings towards others, etc...She loved it. In fact she was disappointed when she thought she wasn't going to be in the group anymore. However he started a new group and asked if she'd like to be in it. He felt that not only would it be good for her, but that she'd be a good influence on the other participants. This gave her a feeling of importance. The subjects they discuss in this group are: building/maintaning relationships, managing conflicts, managing emotions. If the school hadn't helped us, we were considering a psychologist. 2)We have changed her diet. She is very limited on sugar and carb's now. If she does have sugar or carb's I try to balance it with some high protein. I can tell when she has had to much sugar. She becomes very emotional and sometimes gets terrible headaches. Things have improved greatly with these two things. It's still not perfect, but a lot more controllable.

Is your daughter getting occupational therapy? There are lots of different strategies that can help, both in school and at home that don't really take a ton of time and effort to do. She would not qualify for school-based OT without being in special ed, but you can get out-patient therapy that would do wonders. If you have not already, just ask your dr. for a referral.

My daughter has Asperger's. She doesn't have friends because of her social issues that come along with this disorder. She is a A & B student in school and has the same issue as your daughter. She totally looses it when she comes home. I find, if I give her the space she needs when she gets home she does much better. She will either watch TV or play on the computer. I always make her do her homework first so she stays in the school mode. Transitions are the hardest. Rewards for improved behavior also work. I have a prize box and let them pick from it when they accomplish there goal. I sometimes take them out for dinner. Just her and I. I make it a very special night. I have also given her small incentives and after 4-6 weeks give her a big reward (like dinner with mom or a toy she really wants that is under $10 or $20 value).
Good luck. 7 is a hard age.
C.

K.,
My nephew is on the Autism Spectrum (he's very high functioning - he has all his language and attends a mainstream school but struggles with sensory issues and dealing with stress/anger) and he experienced a lot of the same issues your daughter seems to be experiencing. I know that one thing that has helped him hugely is a special diet. I know it sounds strange but it turns out he has many food allergies and when he'd eat those foods, they would hurt his stomach and he didn't quite know how to express that which caused him to act out all the time. He is now on a gluten and cassein free diet (no wheat or dairy). I know it seems extreme but I can't begin to explain the difference I've seen in his behavior since he started this diet. He also has multiple behavior therapies which have helped too but even with these therapies, if his mom allows him to eat wheat or dairy, his bad behaviors return. You may want to consider getting your daughter tested for different food allergies. I don't think it's the only thing you can do but it may help the situation... My sister-in-law has also removed all unnatrual foods (he doesn't get anything with artificial coloring, etc) from my nephew's diet which further has helped him. I wish you the best of luck!

K.- I know your frustration! My son has sensory processing issues. His was very severe when he was young. We had to turn socks inside out, cut off tags, skip collars on shirts, and use elastic waist pants. He didn't like to be crowded or hugged. We went to Mary Free Bed and did outpatient therapy with an occupational therapist. Are you familiar with the brushing technique/joint compression. It is a very simple technique and very calming for the child (they actually enjoy it). It works wonders on the overstimulation meltdown and tolerace of things. It is easily taught to parents to administer at home several times a day. Many school systems have a occupational therapist for the district, call Mary Free Bed for resources, ask your pediatrician. Many medical people do not understand sensory issues, I had to advocate for treatment without the help of one pediatrician until I found one that was versed in SPD.
My son is now 12 and has certain things that bother him but know how to adjust things to work it out himself. It gets better as they get older because they can verbalize their needs. The meltdowns are very frustrating from a parent perspective---hang in there!
J.H.

I am not familiar with this disorder but my son has a variety of disorders. He would be really good away from home and for anyone else. When he came home, boy did Mom get it. I understand that you want your daughter to learn to control and deal with her disorder. However, I read once 'Do you want your daughter to remember her childhood as always being in trouble?' If there is a medication that can take off the edge off of her distress, please try it. I really don't know what kinds they have for this disorder but I'm sure that the Dr. that diagnnosed her will have some advice. I am not saying to 'drug' her. I am only suggesting medication to help you help her. If she was a diabetic, you would give her medication. Thank God she isn't but this is the same type of thing, just not as common. Good luck.

My son is 5 and also has sensory processing disorder - of course it shows itself differently in every child. There is no magic pill unfortunately however there is sensory therapy which my son has been doing for 1 yr now and in his case has been very effective. We've been going to Sensory Systems Clinic (13 and Jefferson in St Clair Shores) and they are wonderful. They specialize in children and are very thorough in diagnosing what exactly your child is experiencing (which helps you as you and your family try to deal with the disruption) and the therapy is all play based. My son loves going to "play" each week. My nephew also experienced some sensory issues (much more similar to your daughters) and went through sensory therapy as well for a few months and is doing much better now. My husband wasn't completely on board when we started the treatment but he at least was willing to give it a try - we saw some pretty quick results (increased self confidence and being less emotional) that convinced him that the therapy was worth continuing. A child with SPD can be so time consuming and frustrating but I would really recommend trying the therapy it has made a huge difference with my son and subsequently with our family.

I am feeling your pain...you are describing our familys life as few years ago. It can get better - ours has - hang in there! First of all, a calming activity in the morning has helped our son - ex - tramp, laying on the tummy in a swing, pulling a wagon to school, hugging with a heavy blanket. It sets his body up for the day. I do the same thing with him when he comes home. Sometimes, chewing on a straw helps too. Do you know about the Abilities Center in Walled Lake? They are trememdous! I'm happy to talk further with you if you have any questions.

M.

My daughter, who is now a successful physician in her 40's, used to be like this. She seemed to grow out of it over time. The two things that helped were to always give her enough time to get ready and to transition, including friendly time warnings, and to let her be in charge of her clothing as much as I could within reason, giving choices etc. As she got older and peer pressure developed, whe was more inclined to choose appropriate outfits. Never could she wear socks with seams or anything itchy. She'd tear all the buttons off a blouse to get it off when it bugged her, throw things etc. One of her 4 children had this too and talked about building a factory to make seamless socks one day. She's 19 now and if she's having problems, she isn't talking about it. We had to cut the labels out of clothing for both. Sometimes underthings can be worn inside out for more comfort, as crazy as that is for the adults to allow. Both have always done better when they can shop for their own clothes. Some of it seemed to be about control and stress. My daughter is very smart and has always been pretty intense. Both she & her daughter have dry, sensitive skin as adults and love lotions and oils, so those things might help.

Good luck! This stuff drives you nuts!

My 11yr old son also has issues with sensory processing along with his Aspergers... A great book for you to read is Out of Sync Child... I can't remember the authors name, but she has a bunch of these books out now. Including one called Out of Sync Child has fun <something like that> ... Some things that are recommended are brushing and weighted clothing to help with learning sensory integration. Also, if your daughter has a scrip stating she has SPD she may qualify for occupational therapy in the school system... She would need an Individualized Education Plan to set up services.

good luck

I am an occupational therapist who has worked with children with sensory processing disorders. I would recommend you find a local therapy center that has occupational therapists who are experienced in the field of sensory integration/sensory processing. An occupational therapist can work with you and your child within the clinic, as well as provide you with suggestions to implement at home to make your life easier there as well...it is not unusual that your child is very successful at school and falls apart at home - this is common with sensory processing disorders. That in itself doesn't help you, but just know that there are professionals who understand what you deal with with your daughter at home - regardless of what is seen at school! I hope this information is helpful.

Hi K.,

I'm sorry that you are going through this. I understand completely. My 11 year old daugher was diagnosed with sensory intregration dysfunction when she was 5 years old. It has been a rocky road. As for your daughter's meltdowns -- do you know what sets her off? Is your home too noisy (TV or radio on?), too warm, too much activity, have bright lights or otherwise too much stimulation? Clearly, your daughter is reacting to her environment (home and/or school). She is probably holding in all her reactions and emotions at school and is ready to erupt when she comes home. Are your daughter's teachers aware of her sensory issues? Does she have an IEP (individualized education program) in place? There is a possibility that the sensory issues are part of a bigger problem. My daughter has asperger's (diagnosed when she was 8)and has an IEP in place at school which has been a tremendous help in keeping things structured for her. She saw an OT (occupational therapist) for five years and now sees a behavioral therapist, receives cranial-sacral therapy, Reiki, and soon will be seeing an accupunturist. It really helps her with her emotional control and social interaction.

As for getting your husband on board, well, it took my husband a little while to really understand what was happening with our daughter. Now he is completely with the program! The best course of action is patience and education. Read everything you can get your hands on about sensory intregration and make your husband read, too! If you take your daughter to an OT or a behavioral therapist, have your husband go along to get involved with the therapy. Meds may be necessary at some time in the future and only you will know if that course is right for you and your daughter. There is so much that we can do for our children now to help them be successful in life with or without meds. I'm using every tool at my disposal to make my daughter's quality of life better. Sometimes it's hard to feel positive on the dark days, but there is hope!

Hang in there and please email me if you wish.

Peace to you.

I have a place for you to look into. They do not (as far as I know) prescribe medication. They exam your child, find where the problem lays and have ways to help them "fix" what is wrong. Here is the link:

http://westmichigan.sensorylearning.com/

Take some time - I know Grand Rapids is a ways to travel - but our kids are worth whatever it takes! (right?!)

Good Luck!!

K.

Take her to Sensory Systems in St. Clair Shores...I believe or close to that area.b Macomb ISD could help you with this information too.Their # is ###-###-####. They will have the number for Sensory Systems. Hope this helps! C.

My daugher is 7 years old and reading your request is like I wrote it myself. We have been through OT, Counseling, you name it. We she comes home and decompresses all over us, it is so frustrating. We have found that going up stairs straight to a warm bath is what can calm her. She simply floats. She will stay there as long as she needs and comes down a new kid. The OT told us that the water helps her know where she is in space and it is a relief to her. We are looking into swimming lessons because the water calms her and helps her ground herself. We have also had a weighted blanket made for her.

We received the most help through the Vision and Sensory Center in Grand Rapids. The OT "gets it" and she referred us to a pediatrician that gets it. (My 1st one kept telling me it was my parenting. LOVE THAT!) SHe started the center because she was frustrated with the lack of understanding about the disorder. It is now called The Center for Childhood Development and it is in Jenison. I didn't happen to see where you live, but Molly was a Godsend.

Good luck. I feel your pain, for yourself and your daughter. :)

C.

I don't know a lot about it but, I have a daughter with Aspergers (ASD) and she has a lot of the same problems. With the sensitivity to clothes, I have to wash her clothes sometimes 5 times or more to get all the sizing or starch out of them before she's able to wear them. I have better luck going to thrift stores because they have already been used. She also has a hard time controlling her emotions and social situations can send her out of control sometimes (anger). We have found that with my daughter something that really has helped with her has been taking her off red dye. Anything that has red dye in it makes her emotions and anger fly. I know your probably thinking I 'm crazy but, when we were going through the beginning of finding out about her disorder. I came to a point where I didn't know what to do. I wasn't sure how to help or deal with her (we did take her to counseling). My husband happened to take her fishing and the only thing they took was a red Gatorade. He said the more she drank of it the more she became violent and couldn't control her self. So we decided to stop giving her anything with red dye in it. It has been over a year since we took her off and she has made great improvements overall. We still have problems of course but not to the extent they were. Even though there are skeptics who say there is no corrolation between ASD & certain dyes, we find in our case definitive improvements. My suggestion is try it for 6 weeks or so & see how it works for you (you may even want to consider adding blue dye to the list as well). Anyways, I have a question for you if you don't mind. We are looking at having another child but, because of my daughter's problem, we are worried that a future child may be a repeat case especially since my husband has ADD & I use to have seizures when I was younger. So my question is, has your 4 yr old exhibited any of the same symptoms as your 7 yr old does? Thanks & hope this helps. K. G.

K., I feel your pain! Although I don't have a child with those exact issues, I do have a 9 year old with Asperger's Syndrome. That is a nonverbal processing disorder that causes social and verbal difficulties. He has some of the same symptoms your daughter does, though. Who diagnosed her? Was it a social worker or occupational therapist at school? That person can help a lot. She can help get your husband on board. You can have a meeting where you can all sit down and come up with a plan. She can refer you to other resources and books about sensory processing disorders. There is a program in the area through Easter Seals, which gives sensory intergration therapy. Your daughter could go to that and receive other helpful therapy in the summer to give her a head start before the next school year. It will help so much to have your husband of the same mindset at you. Read books about it. There are some good ones; I just can't think of the names of them. You could google sensory processing disorders for info. The school occupational therapist will give you ideas about other therapies which could be helpful at home. Have you heard of brushing your child? It sounds weird, but it can be soothing to these children. The O.T. can demonstrate methods for brushing. These are hard times, but it does get better. It's great that you are looking for help. Just know that you are not alone!

K.,

My 9 yr old son has Asperger's, which carries some similarities of symptoms with SPD. He has a wonderful therapist in Farmington Hills that he sees every other week, who is able to work on practical solutions to controlling his emotions. Alice Nasol ###-###-####

He also takes two homeopathic supplements from nativeremedies.com. One is called Focus and the other Mindsoothe Jr. We limit sugar, especially high fructose corn syrup, artificial colors and processed foods in general. He takes a multi-vitamin from Shaklee as well as an Essential Fatty Acid capsule from Arbonne. I am able to get discounts on all these products- let me know if you are interested in trying them.

As for your husband- the more my husband became involved with my son's treatment- aka taking him to therapy, the more compassionate he became. I hope this helps.

T.

Your daughter is working very hard at school. Harder than most of the best students. She is emotionally exhausted when she comes home. My son, now 21, is learning disabled, too (Asperger's syndrome). They work so hard to keep it together at school, that they need to vent those emotions in a safe place. Home. What worked for us was karate practice right after school, to work off the pent up frustrations. The difference is remarkable. Any physical discipline with large body motions where you can make noise will work, but my son liked karate the best. good luck. They do better when they are older... the elementary school years are the toughest. L.

My sister had similar problems, and also obsessive compulsive disorder. She went to an O.T. (occupational therapist) and this helped her a lot. Make sure to go to someone that specializes inthis area. They tried her on different meds first, until she had a bad reaction to one and almost died, most medications have not been clinically tested on children, so I would advise against that. The therapy really helped though. Good luck.