Sensory Integration Disorder Support Group

Hi martinimomma,

I am so sorry that you and your little one are having such a difficult time.

I remember back when my son was little (2yrs old) and I couldn't even bathe him for a whole year. He was frightened of the water. Imagine me doushing the poor thing with warmed water on the kitchen floor while it was covered in towels to keep him safe during the tantrum. Doing that in the hard tub was just too dangerous! I felt bad for him and me that rough year!

Then last year (12 y/o) we got kicked out of the dentist because he was afraid and well...the dentist got angry and scared himself. I actually just broke down and cried in the car. All I want to do is take good care of him and be his mom. It just isn't always easy to take care of him when he can be frightened of things that are required for his care!

It just pains me soo sooo much when we as parents only want to take really really good care of our kids. And basic things like eating and bathing "get in the way." I understand how emotionally draining it can be.

You're right...it is hard/impossible for others to "get it."

I think talking on here is a good step in "what to do."

Connect with other parents. If your girl goes to OT talk to other parents in the wait area....if she doesn't go...and OT goes to your home...offer the OT to give out your number to another mom that she thinks you would get along well with.

Be realistic with expectations. Sometimes I want so much for my son to be doing such and such. But I wear my own self out by working harder than he is at his goal. Sometimes more can be gained with accepting and living with certain things.

Find a way to nurture yourself...alone. Get dad, aunt, someone, even pay someone so that you can look forward to a weekly break.

Then make sure you are finding time with your little one that you are both genuinely enjoying. She is extremely sensitive and if she is like my boy...she picks up on your moods very very easily. Before I realize I am annoyed...my son mirrors back to me moodiness. I don't know how he does it...but it is like he feels my vibe before I do. It always helps to make sure that he is getting as many good vibes from me as possible!!!!

You say she was just diagnosed...that is great! Now hopefully after all of your researching things will start making some sense and be easier....after you get through this current moment of feeling flooded with the news.

I Hope things start looking up...let us know.

I sometimes feel bad because I am here to be around people that are dealing with some of the same things that I am dealing with. I have a 6 year old with auditory processing dysfunction and from day to day its not really that much of a struggle. I have learned what she needs when she needs it. I have learned that the headphones were the best things for her. She may use it as a crutch but she needs to feel safe right now. I don't know if she will need them her entire life but if she does then she does. I think the hardest thing to deal with is my husband because he feels that she does not need them and that she will just grow out of it or that she is just doing it cause i let her get away with it. He didn't want her to bring her headphones to school for a week and see how it went. She refused to go to the bathroom and got a UTI cause she held it in all of the time. I finally sat him down and just said you need to get this, she needs these to function properly. I have learned so much the first few days of being here. The first thing that I did do when I learned that she had this was go get the book The Out of Sync child and I don't think that it helped me much. I learned a lot of this like a blind person learns, just feeling around for things that might work. She has an aversion to shirts that don't have large enough holes and i make sure that stretch her shirts enough and if it gets stuck we try and laugh about it, not cry about it. I try and cuddle her when she needs it, when she hears a sad song, or when she feels anxious. I do what needs to be done. Its all for her.

martini momma,
You are doing the right thing to learn all you can. Find a good OT who knows about sid. That will create miracles.
It is hard - every day. You sometimes get just as frustrated as your child.
I think right now, breath, have a glass of wine and learn all you can about how to help your child live in her world.
It is overwhelming and makes you crazy. Once you know what triggers her, you can think ahead and avoid some of the situations.
I know you feel like it will never be good, but I know it will. It's been about two years of therapy each week, and it's amazing the difference.
Remember, do whatever you need to do to make it through today, or this moment. You can do it for her.

First off take a deep breath,,,,
NOw , its good that you are reading all you can it will help, if you get a chance read the out of sync child, that book is great and really helped me alot,.
Make sure your OT is up on Sensory because alot are not, at home you can help yourself by making a sensory diet, ask your ot to help you,, this helped me a ton at first, keep a notebook everytime he has a meltdown write down what set it off, this way you can figure some of the triggers, beleieve me it wont cure them all but it will help you alot,,,

It will be tough, we struggle with my daughter as well, but hang in there, get a sensory diet to start, and then just learn and do what you can...Take a weekly break as Lynnda said, you need to,.

Hi martinimomma,
Please know that it will get better - slowly but will get better. In the meantime, make sure you add extra time so you're not trying to rush. I think children with SID are especially sensitive to stress. They know when you're stressed and their stress level will go up accordingly. The more stress, the harder to dress, eat, etc. and the tantrums start. Approach things with humor and distractions - goofy tunes, etc. Find things that work and stick to them. So what if they eat the same food and wear the same clothes day in and day out. It makes them happier. Remember, they will not go to college wearing the same outfit. With my twins, now 8 y.o., we have gone through phases with food and clothes. They are becoming more aware of what other kids wear and are trying to experiment with clothing. In general, they are more able to deal with their emotions. Instead of letting the emotions take over, they are better able to think through. For example they talk through: "This shirt hurts me but I really want to wear it because it is like what other kids wear. Is it so uncomfortable that I can't make it through the day?" They then decide what to do. (Also, I pack another shirt in their backpack in case they change their mind - knowing they have control and can change if they want to, helps them. So my best advice is to hang in there. Keep taking deep breaths. Know that it will get better. Do NOT listen to other people who pass judgement on you. Your child is feeling real pain. Your child is NOT trying to control you. I remind people that my goal is to raise a happy child. This does not mean that I don't place limits on their behavior. They must follow behavior rules. The only area I am flexible is in areas that involve SID such as clothes, food, etc. Best of luck!

I very much feel your pain. My son is struggling with SID as are we. I have such a hard time with him at homework time and he has become so concerned with what other kids think of him. He's very concerned with what he wears and how he looks. The constant accidents and coordination issues that keep him from riding a bike like his friends breaks my heart. He wants to bad to be like everyone else and he's so frustrated. He's become very defiant. I don't have much advice for you as I am just learning about this myself. It is helping a lot to read what other parents go through and pick up tips here and there that will up us with our situations. I guess we just need to hang in there and give a lot of love.

As I read your post, tears slowly began to roll down my cheeks as I can completely relate. We have been dealing with SIDs for the past 3 years. Some days are better than others. And some days I cry from exhaustion. But there is a picture of my daughter that was caught at just the right moment. It captures her, the beautiful child I know she is. And in those moments of frustration or pure tiredness, I look at that picture. It gives me the strength to keep going.

My biggest recommendation is making sure you find time for you. Something I am horrible at. But I believe that I cannot help her to the best of my ability if I am not taking care of myself. So, after she is sound asleep, typically on a weekend evening, I leave her with my husband and go to the bookstore. I love that they are open till 11 p.m. I read and relax.

You are right. No one really understands unless they live through it. But you have people here to lean on if you need to.

Hang in there. And hold on to the good days. It is what gets us through the tough ones.

This I think Is what all of us struggle with the most, I want my daughter to be happy, but the world will not bend to her, and my other children can not be made miserable by her. When do you give in? when do you push? If you give in to much are they learning to be manipulative? If you push too hard they become fearful and defiant. I have run the gambit of discipline technique, 123 magic... we always get to 3, time outs... shes 4 its supposed to be 4 mins .... do you stop fighting with her at 4 mins? or push till she stays for 4 mins when 3 hours later you have both forgotten why she was in trouble in the first place? Ignore it?... how does any one ignore a child who is yelling in play and disturbing everyone in the house (and sometimes you wonder the neighbors)? or putting lotion on the baby when you have hidden the stuff and done everything including beg her to just leave the baby alone? Shouting is never the answer.. but how many of us have found our selves shouting before we realize it when they don't listen and/or argue with every word that come from your mouth? Taking away privileges.... my daughter doesn't care, put away the toys, take my TV, I'll entertain myself by squeezing the tooth paste on to every flat surface in the bathroom, what do you mean how did i get it on the ceiling? the baby did it, don't you know that? Find there their triggers... three years and i still haven't figured out what sets her off all the time, they seem to change constantly. So what do we do? We try to be strong, make choices we believe are right for our children , and pray we don't screw them up. When their older it will be easier because then we can help them make their own choices when they can tell us what bothers them, instead of making our best guess and hoping it doesn't lead to melt down.

wow you sound just like me when I first had to start dealing with this..first take as many deep breaths as you need...second and maybe first also in the interst of your child be vigilant with the therapists...our daughter is received OT and DT (developemntal therapy)...her therapists are fantastic however we just fired the speech therapist because of attendance issues and focus on specific things my daughter was doing and the therapist was not bringing out....you're right..most ppl don't have a clue unless they are DEALING directly with it....take a deep breath...this is your offspring and you have to fight for them like never before...some ppl see me coming and run..lol...but I am adamant i the care our child receives ....this all started with her first set of vaccinations...and here we are today...good luck and remember be the advocate...you know your child better than anyone else!