Is wondering if any other parents are going through the same thing?

by Melissa
(Boston)

Hello everyone,


I am a 35 year old mom of 4 beautiful children. My daughter at 4 1/2 years old was diagnosed with SPD... from the time of birth she hated being in car seats, as time progressed, she did not want to wear socks,pants,long sleeved shirt,etc...

When she was 2 years old I kept telling her pediatrician that something did not seem right with her.... he kept telling me it was something she would out grow, finally after long struggles with her just to wear socks, he referred me to an amazing occupational therapist... my daughter is now five years old... she has been seeing the occupational therapist for 4 months, on a weekly basis....

We have tried the body brushing, the ball roll, etc. and me reading many books about SPD. However, my daughter has only gotten worse, she has a severe case "only" of the Clothing SPD, she will only wear one dress, that I have to wash on a daily basis, she will only wear one pair of boots, and now spring is approaching, the boots need to go, I know a battle will unfold, before, underwear never bothered her, now she is changing them 8 or 10 times a day, stating they are not tight enough and breaking into major rages while she is pulling them off.

She will be entering school in the fall, but as it stands I cannot send her like this, if I even mention pants, socks, sneakers, or the "not the right Undies" she breaks out in a MAJOR tantrum.

In these rages she also has said things to me that she wants to cut her head off, or jump out a window, because of these outburst of anger, my 3 boys suffer too, because everything with her is an issue,if it involves cloths, Just recently she went for her 5 year check-up and her pediatrician suggested I put her on an anti-depressant, because he feels she has anxiety,OCD, etc.

I really do not want to do that.... I read the side effects, and I just can't put her on medication, My heart breaks every time I see her break into a rage over clothes, other than the SPD, she is extremely smart, very lovable, she is my princess.

I cry every night & pray she will get over this to live a somewhat normal life.

Has anyone had the same issue's with their child or have any advice to give, it would be so much appreciated.

thanks to all,
sincerely,
Mom of a beautiful special little girl

Comments for Is wondering if any other parents are going through the same thing?

Average Rating starstarstarstarstar

Click here to add your own comments

May 13, 2010
Rating
starstarstarstarstar
you are not alone!
by: Anonymous

I would recommend you have your daughter evaluated by a SPD/Autism specialist such as a Neurologist or the like. this particular specialist could figure it out for you.

My SPD 10 yr old has anxiety but then so does her HFA sister... and so do her add db and ds.

This is not a reason to put her on meds at this age.
Jeanette

May 13, 2010
Rating
starstarstarstarstar
response
by: Anonymous

My oldest daughter had huge issues with clothing, nothing like what you go through though. Eventually i gave up trying to control what she wore as long as her body was covered properly. She is older now and still does not wear underwear, and only rarely can i get her into socks. She can have a favorite pair of pants she likes and i will buy the exact same size, brand and everything and she will not wear the new pair, she is very picky, i tell her that if she wants to wear the same pair of pants to school everyday then that's fine with me. I no longer care what she covers her body with and i no longer care what other people think either. Even my own family gave me a hard time when i let her go without underwear, but it was the best thing i could have done.

Also my daughter got much worse with OT. Every session turned into a nightmare and it took a long time to get over after the therapist left. I had issues with my therapist from the beginning because she thought i was letting my child "get away" with not doing this or that. It was hard to watch her struggle to endure the sand on her feet. I ended up quitting it altogether. but i took what i learned and worked with my child at a much slower pace and eventually conquered many of our issues myself.

goodluck and also wanted to let you know that i read in an earlier post that a mom did have success with medication, i don't know anyone personally who had tried it but i can tell you that when it comes to doing well in school i would try almost anything a childs education is everything.

May 05, 2009
Rating
starstarstarstarstar
child has same traits
by: Anonymous

I feel your pain! My daughter has a severe case of clothing SPD as well. We finally started OT with her last week - she is 3.5 years old. This morning was another meltdown trying to get panties on for pre-school. Then her pants hurt - she gets so worked up I can't even get through to her. Then once everything is on and we are out the door, the seatbelt hurts and it starts all over again...it is not an easy thing to deal with and I completely understand your nightly prayers b/c I have the same ones!

We have high hopes for the OT, but we were also told to consider some pediatric counseling for anxiety issues - the therapist told us that many kids get diagnosed with ADHD, OCD, Autism and it is actually anxiety issues - maybe try to bring your child in to talk with someone before medicating? I have started to talk very opening with my daughter about the issues, explaining to her how frustrated I feel about it, asking her how she feels when she breaks down, trying to figure out solutions together - I am trying everything I read b/c something has to help....you and your family are in my thoughts b/c I know how desperately you want your child to be happy and healthy. You are your child's best advocate so do what you feel is right for your child. Good luck....know that you are not alone!

Apr 30, 2009
Rating
starstarstarstarstar
meds and self esteem
by: Anonymous

IF you decide to do meds one thing I was told by a good friend who had a child with similar issues is "we need to remember the meds are not for our benefit but for our childs so they can feel good about themselves, be successful and be accepted by others" I know as parents we feel as if maybe we have failed them in some way but some kids need that extra help and makes them feel better about themselves and in turn makes everyone a lot less stressed and happier! just something that helped me and my child. there are many times I feel as though it sure would be nice to have an instruction manual for our kids! good luck!

Apr 27, 2009
Rating
starstarstarstarstar
giving medication
by: Anonymous

I wanted to add I had similar problems with my daughter now 6 , she was 18 months when she was diagnosed. Just recently in kindergarten she was having major problems in school. so back to the doctors we went ,first her pediatrician, then a neurologist and it was determined that she has ADD and ADHD on top of the all her sensory issues. I was very reluctant to start her on medication but I will say it has made a world of difference. She is still behind in school and has some major processing problems, but she is getting it and there has been some major improvements over this last year.

Apr 19, 2009
Rating
starstarstarstarstar
medication
by: Karen

The medication that was suggested to us is Risperidone-she is 8 yrs old, they suggested .5MG-2X day (we only give her .5-1x every AM) and so far this has worked great for her. I have read on Web MD about the medication and a they do recommend in higher doses-but this works well for us right now. Also my pediatrician stated that she has seen some children go on this for about a year & then be able to come off of it not needing further medications. (She says you are able to work with there issues while on this medication, they learn to handle the situations that irritate them and how to handle the frustration of it all)

Hope this information helps & if you do decide, I hope it works as well for your child. It's so helpful to know we are not in this alone and this website has been therapeutic for me also-Thanks for all your comments and advise!

Apr 15, 2009
Rating
starstarstarstarstar
medication
by: Melissa

I was also wondering if any of you if you don't mind would let me know what medications.... your children are on.... My daughters doctor wanted to put her on a low dose of Paxil.... it scared me because it was not FDA approved.... I was just wondering what else maybe could be out there..... thank you all so much.... for your kind support... it is so much very appreciated.....

Apr 15, 2009
Rating
starstarstarstarstar
Thank you to all the parents that replied!
by: Anonymous

Thank you so much everyone for sharing your story..... i am so grateful.. for each & everyone of you.. it feels so good to know we are all not going through this alone.... I feel the school systems should be more educated about SPD...I feel when you speak of it to other parents... that have never even heard of this... they judge your parenting skills....

I think together we could all be a voice for our children....what each of you said was very, very helpful.... you have all touched my heart... I pray & hope our children will get through this....and doctors, schools, people will get educated about SPD.... please if ever any of you ever need someone to talk please don't hesitate....

Thank you all again for your heroic support...
sincerely,
Melissa

Apr 14, 2009
Rating
starstarstarstarstar
go with your gut
by: Karen

My daughter 8, was just diagnosed about 2 months ago with SPD. She was making remarks of wanting to just kill herself - the bad thing I requested help from school counselors and because she was getting good grades & not so agitated at school-I was told I needed to spend more time with her & punish her for saying these things - unfortunately this only left of with much guilt and frustration to see that she was no better.

Like you I was told she would out grow the issues. We are seeking professional help from a child psychologist, occupational therapist, and have since changed pediatricians (who studies pysch on the side).

Finally I feel after 8 years we are getting somewhere. Like you I was very reluctant to put her on meds and actually held on to the prescription for a month before having it filled. (I only give her half of what is recommended) I can see much improvement. I have had talks with her & she says she feels happier & I don't have to watch her just sit & cry. I just can't imagine living in a world where everything irritates you. I have never seen her happier and haven't had to experience the pain of hearing the negative comments.

Just be aware I was told they usually act out at home because that's where they can be themselves. So after holding things together all long day in school everyone pays when they get home. It just wasn't fair to our 6 year old either, so this was another reason we decided to use the meds. I felt very guilty at first, but now I see how happy she is & we can work on behavior issues without the fight.

I think it has benefited us all, and we are all closer now. I know it's a hard decision - but you know what's best for you and your child, just go with your gut! Our only regret was that we couldn't get her help a long time ago! Good Luck.

Apr 14, 2009
Rating
starstarstarstarstar
school help
by: Anonymous

Your question about sending your daughter to school... I would suggest not sending her! teach her yourself... home school! I have a 7 year with these problems as well as several other major problems with SPD! It has affected several other primary things in his learning as well such as fine motor skills. In a normal school environment he would definitely fall behind, but at home I have developed ways to help my smart kid learn so that does not hurt his process!

Plus the flexibility of homeschooling allows us to go to his OT twice a week. He has a long journey ahead of him, but he is comfortable at home and more willing to learn when we use the sensory diet we have worked for him. I would definitely suggest you keep her at home till she gets older and learns a little better how to work with this her self!

Homeschooling is not hard and is not all day long like some think! Plus it gives your special child what she needs more than anything else and by someone that loves her more than anyone else could!

Apr 13, 2009
Rating
starstarstarstarstar
keep your head up
by: Anonymous

I really didn't see any progress with OT until after 6 months for my son. It's been 9 months now and i have seen a change in his eating habits, for the better and also dressing. It's not only about progress with these kids; it's also seems about manner in which you approach them.

Knowing that a particular event might be a challenge I explain to him the events that are going to happen, have him bounce on the trampoline and when he feels ready, we move on to the project/activity.

I also tried playing with him and showing him what behaviors that are appropriate through play. I would definitely consult OT and developmental pediatrician in regards to the that self abusive language.

Apr 13, 2009
Rating
starstarstarstarstar
Hi,
by: Anonymous

Hi,

My daughter has other sensory issues but has the same self-abusing language. We had much success with OT, but by the time she was 11 she was starting puberty and the old things stopped working. She, in a rage, told me how she wished she could die. I was horrified and called her doctor we had a long meeting and decided to put my daughter on meds.

I agonized over my decision as most parents do but knew she was really hurting. The meds. have been a blessing. She is still herself but the fog is cleared. Her grades have come way up and she feels capable. Meds. are a hard choice for sure but you are a good parent. Trust your gut.

Apr 13, 2009
Rating
starstarstarstarstar
Right there with you.
by: Anonymous

My son is now 11 and part of his issue has been clothing and has been going on for as long as I can remember. His started with his socks they had to be SUPER tight and if they weren't then he would totally break down "either crying or screaming". Then as socks went away it was his shoes they had to be tight then it was his pants then his undies had to be loose "boxers now only" and now his pants have to be loose but not "loose its such a fine line"

So it always transverses into something else. He was just diagnosed with SPD and now so many things seem to fit "pardon that pun" I know you want to bang your head on the desk I have so been there but find humor in it and just do what you can to support her any way you can. Trust me it will be the only way you will stay sane.

Apr 13, 2009
Rating
starstarstarstarstar
Hope this helps
by: Anonymous

My daughter has SPD and her OT has her in a pressure vest. We found it in the Abilitations catalog. She wears it all the time EXCEPT when she eats or plays outside. The brand is Velasoft.
Good Luck!

Apr 12, 2009
Rating
starstarstarstarstar
Wondering
by: Anonymous

I was wondering what the OT says about all of this. I think maybe you should see a developmental pediatrician just to be sure she needs meds. If she does then as long as they are helping her don't let it bother you. Best of luck!

Apr 12, 2009
Rating
starstarstarstarstar
Keep an Open Mind
by: Kim Sullivan

Medication has side effects, but so does living with sensory problems. My son has sensory problems and ADD and his medication does help him. I had no idea I had sensory problems and ADD as well until he was diagnosed. I am on a VERY low dose of medication and it has side effects that I don't like, but at least I can function.

He has been on meds since the age of 4. Prior to meds he could not function normally. Be careful of medication, obviously you do not take it lightly which is good. However, sometimes the right medication can make her life less terrible and allow her to be a kid.

I would try therapy and one med at a time and give it a long time before changing or trying something new. If it has a bad result stop it but if it helps try it. You will know when it is the right time, but be sure your doctor is qualified and knows what he or she is doing.

Hang in there, we all feel like bad parents when we give meds or don't give meds. There is never a right answer only a right answer for you. I have been in your shoes and you are not alone. Good luck with any decision you make, no one knows her better than you.

Click here to add your own comments

Join in and write your own page! It's easy to do. How? Simply click here to return to The SPD Q & A.