For those of you who have children with sensory issues, do you find you child have periods of time where they seem almost unaffected and other times where it gets really bad? I am in the process of having my oldest ds evaluated, but it is taking forever. We have an HMO and it has been difficult moving the process forward. Plus, it doesn't help that by the time I really get moving on getting him help his symptoms almost get back in control almost overnight. Then I begin to think it's all me. I just need to be a better mom to him. Everything is okay, but I feel like there is this ticking time bomb in him waiting to go off.

He got a mild cold about a month ago with a cough we can't seem to shake and since then he has been having huge tantrums again. DH thinks I am the problem, but I have to believe I am not this bad a mom. I hate all the drama this situation is creating for my son, our triplets and for me. I was always a very level headed person, now I find myself losing it more and more (in my room, not with the kids)and I don't like who I am becoming. Even when I re-read some of my recent posts, most are complaining. I don't want to be this person. I want to get my son the help he needs. Sorry this post went down a path I wasn't expecting.

Is there anything I can be doing right now before the evaluation? How do you handle the tantrums. (Sreaming, hitting, biting, and swearing)

Tiffany
DS 12/20/04
GBG 2/22/07
34 weeks

I'm sorry I don't have any advice on how to handle him, I just want you to know I am RIGHT THERE WITH YOU with one of mine.

Sensory problems do sort of "come and go" as the child develops and changes over time.

One of my trips was "diagnosed" through EI at age 21 months and has received OT and speech therapy since that time. He gets those therapies in preschool through the district now. Unfortunately, I don't think the OT, who is very young, has any experience with sensory issues AT ALL.

And yes, there are most definitely periods when he seems like any other kid and he is sweet as pie, funny, talkative, cooperative, etc.

Then there are other times - seems to be somewhat cyclical, where he screams NO at every little thing - sometimes wakes up and right away starts with the screaming, hitting, kicking, you name it. And it will be all day for sometimes days on end. No swearing yet, thank goodness.

I realize that ALL kids have good days and bad. It's just that his bad days are REALLY REALLY bad and make him very difficult to work with and sometimes I can barely stand even being in his presence. I try very hard not to let that show through.

I was in tears on Sunday due to his behavior (not in front of him). And if you knew me, you'd know VERY little gets me so frustrated that I cry or yell.

And then, yes...OVERNIGHT...he was very much "normal" on Monday and Tuesday. I am starting to think he may have issues with some foods or food dyes, because there was definitely red dye in some of the food he ate Friday.

I feel the same way you do sometimes...I just need to be a better Mom. But I am the same Mom to all 3 boys, and the other 2 don't have these issues. I am planning on starting a food/behavior diary for him to see if I can spot any food connections. I am also thinking about videotaping some of his more aggressive episodes. That way, should I decide to consult a specialized practice or even a pscyhologist, I can show them what types of behavior have me concerned.

I can also tell you that over the weekend, my child woke up with night terrors TWICE. He used to have these 3-4 times/week when he was younger. They always start about 90 minutes after he goes to bed. I thought we had seen the last of them, but they reared their ugly head just when his behavior was truly atrocious, so they are probably connected to the sensory issues.

BBB born 7/26/04 at 35 weeks

Thank you so much for your response. My son's behavior is just like yours. It amazes me how his mood can change on a dime. One moment fine the next it's like a little switch goes off and he's out of control. We also have food issues. He generally only eats a very small handful of food. I am also trying to get all dye out of his diet.

And, I can tell by how he wakes up how our day will go. I just want my baby to be happy. It seems like everything is so much harder for him than my other 3. So far, I am not noticing any of the behaviors my son has in the triplets, but I worry they will learn his behaviors if I don't get them under control soon.

Fortunately, I am on hold to make his appt. for an evalutaion right now.

Tiffany
DS 12/20/04
GBG 2/22/07
34 weeks

I have two with sensory issues. One is sensory seeking; the other avoiding. Get the book, The Out of Sync Child (let DH read it if he will). It really explains what these kiddos are experiencing and why. Also get the Out of Sync Child has fun. (There are different level of sensory issues, but honestly I could have diagnosised my kiddos from this book (not that I did, EI did).

Makenna is so classic a case that everything we have tried has worked. If he is sensory seeking, I would suggest as sensory diet (not a food thing) as soon as you can. Some of the things will work, some won't. Makenna likes spinning on a sit and spin, bouncing on an exercise ball, swinging, and brushing her skin. We try our best to do this twice a day. She also needs her joints compressed (which is why she jumps around so much). Also, weights on the ankles for 20 minutes at a time a few times a day and let him stomp.


Since we have been doing this, she has become a different child. When she tanturms, I wrap her in a blanket and press down on her chest, legs, and arms. (Again she is a compression child). That being said, we have been having two months of therapy now and we have gone from 6 to 8 full tantrums a day (an hour to and hour and a half at a time) to maybe one a week (if that).

My husband was a lot like yours, but even he has seen the amazing changes in her. We used to joke that the they brought us back the wrong child after her MRI, because she went from our easy baby to a screaming crazy baby. Now, we have our happy baby back and I am SO HAPPY!

Keep on EI. Call and bug them, you will get results. LOL! Best of luck and pm me if you ever need to talk or ask any questions.

Kimberly,
Mom to Isabelle, Alyssa, and Makenna
www.guinntrips.com

All three of mine were dx with SPD at the age of two, we have been doing this for 2.5 years now and I can tell you there is no rhyme or reason to what can cause an outburst, meltdown or set back. it happens and you can not pattern it or learn when to expect it. The key is to stick to your routine, therapy, therapy, and more therapy and routine routine routine

I have a sensory seeker, a sensory avoider and one that is all over the place. my sensory avoider we have to spend lots of time hugging and deep impact. we wrap him in a blanket and hug him tight, dh gets on one side me on the other and we hug with him in the middle. this helps, as well as a quiet room, a soft comfy chair, low lights and soft music. he responds best to music. He can be great for weeks and then out of the blue we have two weeks of pure hell when nothing works to calm him or bring him back down.

KR is my all over the place child, quiet, shy, then the next minute running jumping and throwing herself into things. withdrawn at times and not talking to anyone, to the next minute jumping off the bed. you never know with her what way she is going to go, her tantrums on the other hand are more predicitable, over tired, not sticking to schedule or routine, no quiet time, she has to have alone time, time to herself every day or she does not survive the day. (neither doees mommy)

d. my seeker, he is a wild man, all over the place, would stay up and play all night if I let him, loves outside, loves running, jumping his bike etc. needs things like that in fact, if we have to many rainy days, cold days etc, he falls apart, he has to have that activity. long car rides are a no no with him, used to be okay, now we have to stop at least every two hours for him to run around or he loses it.

The out of sync child is awesome.

and do not stop the process,even if he seems normal, the therapist see things we do not.

Hang in there.

BBG Triplets Born March 31, 2004
31 weeks three days
Douglas
Kalie and
John Michael

I also have a seeker and an avoider. My seeker is much easier to deal with than my avoider. If my seeker is acting out I can just pick her up and swing her around a few times and she is happy. My avoider on the other hand seems to be a big ball of nerves waiting for the other shoe to drop. She is very defensive around the other children too, it is like she is constantly trying to avoid being in the middle of the activity. We use a proprioceptive vest with her during the day (30 mins. on 90 mins. off) Lots of hugging and cuddling during those 90 minutes off. We also use a weighted blanket for her during the night. There are also times when I will have to put her in the Bumbo seat with the blanket over her legs during the day.

My avoider also has good days and bad days. She could go a weeks with no issues at all, happy, playing with the other children, laughing and taking off developmentally then over night she is insane. Then she will be hell to deal with for weeks then it all cycles back around again.

We do receive services through EI. We have PT 2's a week, OT 3x's a week, SLT (who also works on feeding)2x's a week, DT 1x a week and nutrition therapy 1x a week.

The most helpful thing I have found is to keep a log for your therapists. It is very time consuming but they can often find some triggers in there. We wrote down everything. Eating (what and when), sleeping (when and where), playing (with what and with who) and any outings that we took (even just a short walk around the block).

Keep pushing and get the help that you need. I also recommend The Out Of Sync Child. After I read it I used it as a tool to help some of our less open minded (ie. the ones who thought my kiddos were just spoiled rotten brats) understand why they do the things they do. That it is not all just "in my head."

You are not a bad mom! I know it is hard to stop thinking that it is your fault but that is also something that The Out Of Sync Child with help you come to terms with. Good luck and keep up the good work. Do whatever you need to do to get those services implemented. ASAP!

Not to highjack the post, but for those with a seeker and avoider, did you see improvement in your avoider as your seeker calmed down? Alyssa seems to be doing better in her avoidance of her sisters and playing more with them, now that Makenna has more control. I was just wondering if she was just reacting to her sister more than actually being sensory avoiding?

Also, Makenna is doing really well with therapy, and my OT is preggers, should I push to start finding a new OT for when she leaves or should I just go ahead and phase her out? I think we have most of the issues under control now (she has some not so great days, but it is usually my fault for not giving her the stuff she needs), but I am worried that something new might arise and then I am stuck trying to figure it out for myself.

Kimberly,
Mom to Isabelle, Alyssa, and Makenna
www.guinntrips.com

You need to find a new therapist, I know the kids seem to be doing great, but part of that is because of the therapy. My kids are 4.5 years old, there are new challanges every day and we learn new things that upset them every day. The therapy is helping them to learn to deal with the sensory in every day life, and as they age everyday life becomes different, it will be very important for them to have these skills when they go to school

as far as my avoider being more calm when my seeker is calm, not a chance, yes the seeker seems to upset him, but when doug has had his activity and has gotten calmed down, JM can still be going for a while before he is calm. He is my most sensory child, the one effected by it the most, He has a very hard time calming himself down and coming down from being upset (his main problem) he fixates on things and once he gets on it you can almost forget him getting off it for a while. For example, he does not go to school on Thursdays, that is our special day as he says. So we went to Hobby Lobby this Thursday, I made the mistake of going by the train asile, he saw them so we looked, (mistake number two) he wanted this huge model train (yes like a four year old needs that) I explained to him it was not a toy and that even if it was it was too close to Christmas for something that big. He started crying, screaming is more like it. Keep doing this the entire way to the front of the store, the manager even asked me if she could help, she tried talking to him. Nothing would calm him down. Off to the car we go. I sit with him in my lap in the parking lot in the car rocking him with soft music on for thirty minutes while he tries to calm down. NADA he does not calm. he is still winning, but not screaming and I have to leave to get the other two from school. He is calmer, so I put him in his car seat, wrap him tight with blankers and leave the soft music on. He wimpers the whole way to school, get the other two back home, he is still upset over the train. we do this till nap time. Off to bed they go. I lay down with him and hold him tight, do brushing, deep compresions and he finaly goes to sleep.

guess what he woke up asking about the train. and it all started again. Thank goodnes it ended sooner this time, but it was not easy.

so yes keep them in therapy, it may seem like they do not need it anymore, but it is the therapy that is helping it to seem that way.

I had to take him intoday for an extra therapy apointment after yesterday, and well we almost went yesterday, called the therapist and she walked me through some things to do to get him past it.

Mommy had a rough day!@

BBG Triplets Born March 31, 2004
31 weeks three days
Douglas
Kalie and
John Michael

UGH! You have just described my SI kid to a T. I don't want to take him in to any stores, but realize he needs to learn how to deal with frustration, so I do ocassionally take him in.

I have been there, rocking, singing softly for 30 minutes, to get from the screaming to the whimpering. And then, BAM! first thing out of his mouth after naptime is whatever he was obsessing about. I believe the longest this has ever gone in is 1.5 days. Yes, DAYS. And even after that, he talked about the coveted object for at least another 3 days -- he was just calmer when talking about it!

BBB born 7/26/04 at 35 weeks

at least you know you are not alone.

BBG Triplets Born March 31, 2004
31 weeks three days
Douglas
Kalie and
John Michael

Tiffany
I did not read all of the other replies but I remember feeling the exact way you describe with one of my dds. One day we had a good day and she seemed very typical like her sisters and then other days I was sure something was not quite right with her. I do believe she is on the autism spectrum with PDD-NOS. It really messes with your head and I think that is why I waited so long before doing anything. It is great you are getting him evaluated. At times of illness, a child will usually regress. Even though my dd is on the GFCF diet and hanging in there with school, she still regresses a bit with illness. She is just not herself when she gets sick and then she gets well and I see my girl come back to me. You could try the diet with your son but make sure you have a good calcium supplement first. When you take out the dairy, you need to replace the calcium. I am sorry I don't have much advice other than that, my daughter does not tantrum, she more retreats into her own world. Hang in there. Follow your gut. I hate to tell you not to listen to DH but I guess that is what I am saying. Your mother's instinct is strong and follow it.
Tracey
GGG 2/04

Hi. I had some similar issues. My daughter would act "ok" during evaluations and then after; she would have her fits and such. So, I videotaped a 40 minute fit one day. I showed the next evaluator and they said it was REALLY helpful. It was emotional to shoot the video but it will help her get the help she needs.

Take care,

Alicia

Proud mom to GBG born 12/3/2005 - 35 weeks!

Women's Issues Blog (something to read with your morning coffee): http://friendinreach.blogspot.com/

Bedtime stories read via YouTube videos from a triplet grandmother: http://storiesbynana.blogspot.co

I can't thank all of you enough. It is so great to have a safe place to come and get help with both directly related triplet issues and indirectly related issues. I love all my kids soooo much and I just want to be the best mom I can be. You all inspire me on this board to do better. I am waiting for all the insurace info to come throught and then hopefully I can finally get an eval scheduled.

Tiffany
DS 12/20/04
GBG 2/22/07
34 weeks