DELEVOPMENTAL DELAYS / SENSORY ISSUES

iVillage Member
Registered: 05-12-2009
DELEVOPMENTAL DELAYS / SENSORY ISSUES
5
Tue, 05-12-2009 - 10:21pm

HI ALL,


MY SON IS 2YRS. 8 MONTHS AND WAS DIAGNOSED WITH DD AT 18 MONTHS. HE HAS SINCE THEN BEEN RECIEVING SPEECH , OT, AND SPECIAL INSTRUCTION THERAPY. I'VE ALSO BEEN TOLD HE HAS SENSORY ISSUES.


PRIOR TO HIS BIRTH, I WAS PREGNANT WITH TWINS AND LOST THEM AT 20 WEEKS DUE TO AN INCOMPETENT CERVIX. THIS WAS MIND SHATTERING FOR ME AND MY WHOLE FAMILY. IT CHANGED ME FOREVER. BUT, THEN I HAD JAKE. JAKE WAS SUCH A BLESSING TO US AND HE IS SOOOOOO VERY SPECIAL. I AM SOOO CONFUSED ABOUT ALL THAT IS GOING ON WITH HIM. IT WOULD REALLY HELP TO TALK WITH PEOPLE GOING THROUGH THE SAME THING.


JAKE WILL BE AGING OUT OF EARLY INTERVENTION SOON. I JUST HAD HIM RE EVALUATED THRU CPSE FOR FURTHER SERVICES AND HIS SCORES CAME BACK VERY LOW. THIS UPSETS ME B/C HE REALLY WAS VERY UNCOOPERATIVE DURING TESTING SO THEY WERE NOT ABLE TO GET A TRUE IMAGE OF WHAT HE CAN AND CANT DO.


THIS SENSORY STUFF IS REALLY TOUGH TO HANDLE. HE TANTRUMS AND SCREAMS EVERY DAY. HE HAS BECOME SUCH A PICKY EATER...WONT EAT ICE CREAM, YOGURT, MASHED POTATES (ANYTHING WITH SMOOTH CONSISTENCY), HE IS TERRIFIED OF LOUD NOISES (COVERS HIS EARS ALOT), HE HAS HIS OWN AGENDA AND WILL NOT COOPERATE UNLESS IT IS SOMETHING HE WANTS TO DO, HE HAS NIGHT TERRORS WHICH SCARE THE HELL OUT OF ME B/C HE IS INCONSOLABLE AND NOTHING I DO HELPS, HE HITS AND PUSHES

iVillage Member
Registered: 04-07-2003
Tue, 05-12-2009 - 11:06pm

Hi Teresa-
I am so sorry you are dealing with this. Your son sounds so much like my daughter did at his age. She is 5 now and since we finally figured out that she needed intense sensory help, we have seen such major improvement in her whole disposition.
She currently gets 3 OT sessions at school per week (she is in a special ed pre K run by out town school district), and we give her 3-4 private OT sessions as well per week. The private sessions consist of 1-2 sensory gym sessions, 1 OT at home for fine motor and self help skills, and the 3rd OT works with her on Yoga and she does Therapeutic Listening. She is like a different child now that we have pounded her with sensory activities.
We also bought a small trampoline, cloth tunnel, swing for her room, balance board and a few other things I am sure I am forgetting about so she can do a lot of sensory activities at home. We have a schedule at home to keep her sensory outbursts under control, and in the past 2 months or so, I have had to implement them maybe 4 times, which is a huge improvement

Can you get an evaluation by a local OT that specializes in sensory integration disorder? When I finally found the right therapists for Kaia things changed for her dramatically. Kaia is still a very picky eater, but in the past 2 months she has tried food, that she used to eat and gave up, and she is really liking them again. She has even tried a new food (red peppers) and asks for them all the time now. This is a huge improvement as well.

I think you need to make a list of all the problems you are having with your son, so when you need to talk to a therapist you have everything in front of you. It will get better with the right kind of help. FYI- Kaia also has a speech delay and hypotonia on top of the sensory integration disorder, and all the OT has helped in those areas as well. I really think that Kaia did not feel comfortable in her own body and she was acting out because she didn't know how else to handle herself.

I hope this helps a little.

Alison

kaiamarin
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iVillage Member
Registered: 05-12-2009
Wed, 05-13-2009 - 9:34pm

THANKS ALISON.


THAT WAS VERY HELPFUL. IT SOUNDS LIKE KAIA IS GETTING INTENSE THERAPY. I AM HOPING THAT ONCE WE GO TO THIS MEETING ...THAT HE WILL GET AS MANY SERVICES AS POSSIBLE B/C HE REALLY NEEDS IT.


I ALSO AM WRITING DOWN A LIST OF ALL THE THINGS THAT HE NEEDS HELP WITH. HOPEFULLY, WE CAN START REACHING SOME GOALS.


THX FOR THE ADVICE. BEST WISHES TO YOU AND YOUR FAMILY.


TERESA

iVillage Member
Registered: 04-07-2003
Wed, 05-13-2009 - 10:50pm

Hi Teresa-

I am glad it helped, it is so hard to find the right help.

With his night terrors, have you ever tried a weighted blanket? That has really helped Kaia sleep, as well as calm herself down when she used to have bad tantrums. It may be worth looking into.

Also- I am not sure what services you will get from the state, but for Kaia, what they were giving her at school was just not enough. We added all of the private therapy starting last summer and since she is getting OT either at school or at home every day it seems to be the potion that works for her. I notice that when she is out of school on vacation, that I need to add in more private OT for that week to help calm her down. This is costing us a fortune, but for us it made her and our entire family much more relaxed.

Also- when Kaia started having horrible tantrum, hitting etc..... we started sending her to her room with the door closed for 4 minutes (i used 1 minute for each year of life), if she didn't go willingly and I had to take her there myself, then I doubled that time. She hated being in her room without an audience, and that usually is what made her calm down. Before I started this and the private therapy she was having multiple tantrums a day, now we maybe have 2 a week at most.

We also go over the night before what her schedule is for the day, and I go over it again when we eat breakfast. This way there are no surprises and she cant say she wasn't prepared for what was coming next. We are tough on her, sometimes more than I want, but once we figured out what was going on, we just felt that she couldn't run the household anymore, and told her that we had rules and she had to follow them like everyone else in our house. It took a while, but she knows what the rules are now and she knows she has to follow them. She is so much happier now, and so much more confident in herself, and she now tells Marin what our rules are which is very cute.

I hope your meeting goes well, and keep me posted on your progress.

Alison

kaiamarin
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iVillage Member
Registered: 03-14-2006
Fri, 06-05-2009 - 5:45am
My son has different types of behaviors we are working on than yours so I don't think I have any specific advice, but I will say that we just recently added a Behavioralist to our list of therapists and it has been working out really well.
iVillage Member
Registered: 04-19-2006
Mon, 06-08-2009 - 9:29am
My 2 1/2 yr old is very delayed also and won't eat meat. Her sensory issues are more of the tactile sorts though. I did go through this with my now almost 8 yo. If it brings you any peace know they do get a bit better with age and treatment. My 2 yo is just about to start the eval.'s to be switched from EI and I know she won't cooperate for them either. At least with low scores they will get more treatment KWIM? Life is hard sometimes with a sensory child, but they are so special and unique that in the end all the stress melts away.
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