HI! My name is Sarah. I am the mother of 4 children. My youngest, Brianna who was born June 2008, has SPD. She had a stroke when i was pregnant with her but we did not find out until June of 2010 when she started having seizures. Her doctor said that her motor skills and sensory had been damaged. After reading up on SPD I realized that this was the reason she cried all the time. Doctor thought she had colic. Most of the time we have no idea what is bothering her. Since she is two her only way to communicate is to cry. Sometimes she can tell us when something is bothering her like if the sun is too bright she tells us the "light" is hurting her. Another thing she complains about is her clothes and mostly the seems in her socks bother her. Every day has become a struggle with her to get her dressed, to go any where (she can't stand her carseat straps), and she throws complete tantrums and we never really find out why or what is bothering her. We just have to let her cry it out because even if I try to comfort her she just screams more. This has been very stressful on me since I am the one who cares for her 24/7. She has issues with being majorly attached to me. From the time she was 2 weeks old she wouldn't even allow her father to hold her. The thing I struggle with most is that I never know when she is just being 2 yr old throwing fits or whether it is the SPD. I don't know when I should just be understanding or discipline for trying to "get her way". On top of the SPD, she also has Cerebral Palsy affecting her left side and seizures. I am just looking for someone to talk to about this since no one I know knows about this or understands what I am going through. I hate going anywhere in public because I get looks from strangers like "Can't you control your child" or pity looks. I would really like some advise on how to deal with this because at times I do loose my temper and ask her why she just can't stop crying. Thank you for any advise you can lend.

Hi and welcome! BIG BIG HUGS, Sarah! That's a lot on your plate! Are you able to reduce or eliminate her seizures with medication? That must be scary and stressful to see your child experience a seizure!

My older SPD son wasn't diagnosed until he was in 1st grade, but it was a relief to realize all the things that happened when he was a baby were probably sensory related. He was also a colicky baby and for the first year he would sleep only on me or touching me in some way. He has had major separation anxiety his whole life (almost 10 now)--he's very attached to me. He would scream like someone had stabbed him when the sunlight was in his eyes. He would cry and cry when I vacuumed. My younger son was a pacifier fiend, even the lactation consultant said he had one of the strongest sucks she'd ever seen. And he would scream like I was hurting him, every time I changed his diaper. I learned to change him as quickly as I could! He still prefers to eat all his food with his fingers (6 years old).

One thing I was so glad that we did was do sign language with him. It was only the basics, but it definitely helped us communicate with him. I had seen two of my nephews not talk much until after they were 3. One of them threw dreadful tantrums because no one could understand what he needed or wanted. My son is 2 years younger. So I started signing with him, thinking it was a boy thing to talk later. I knew only the alphabet and hubby's sign language was very rusty (had a previous coworker who was deaf), but I bought a couple of the baby signing books and learned from those. We just did ones like eat, drink, more, all done, milk, cookie, banana, etc. I started at 10 months old but he didn't sign back until he was 13 months old. But I'm sure if you started now with your DD, that she would pick it up quicker than that. Then we signed with him until he was talking better, around 3 years old. We did signing with my younger son, but he didn't need it as much since he was talking in paragraphs by the time he was 2.

Of course, once my kids were older and talking better, then they came out with these signing videos (wish they'd had them a few years earlier!). http://www.amazon.com/Signing-Time-First...36&sr=8-11 I've seen a few of the shows and they're very good! You should pick up a couple of board books to try with your daughter. Something like these: http://www.amazon.com/Meal-Time-About-An...36&sr=8-15

That should reduce her tantrums and your stress, at least about communicating. As for the other things, yes, it's going to be hard to know the difference between a normal 2 year old tantrum and a SPD meltdown, at least for a while. You'll start to understand her triggers and what to avoid. And it will get better as she gets older. Now instead of screaming his head off, my son will say, "Wow, that sun is really bright." So have hope, it will get better. But I think for now, assume every tantrum/meltdown is sensory related. Try to figure out what it might be. Sock seam not quite right? Beeping truck backing up nearby? If you figure it out, try to help. If you can't, try to comfort. Mostly just do the best you can. And figure out what things are important. Is it warm enough to go without socks? Then skip the struggle about putting them on and go without socks and/or shoes. Find some sunglasses that she likes and would wear, or a floppy hat to keep the sun out of her eyes. But obviously car seat isn't optional. Maybe try some of those strap covers. http://www.amazon.com/JJ-Cole-Collection...B0013IEUJ0 See if that helps.

Have you started any OT with her yet? That should help overall. And the therapist can help you learn things to do at home too. Is your daughter able to walk okay with the CP?

Take a breath. It'll be okay. You're a great mom. HUGS! BTDT with the looks from strangers. Be strong, ignore them. Hang in there.

Lynn-
Thanks for the words of encouragement and advise.

Brianna has not been put on medication yet because she has only had 2 major seizures (the doctor's rule of thumb is to start meds after the third one) but we suspect she is having mild ones at night. Next weekend she will be going into the Children's Hospital for 4 days of monitoring so they can see what is happening to her exactly and if she needs the meds. Once they are on meds for seizures they are typically on them for at LEAST 2 yrs.

Sign language- I think I bought that video you have on here. I tried that but it only frustrated her more. She talks really well normally but when she has a fit she no longer communicates. But I think I will give it another try, this was several months back.

Socks-Brianna has to wear an AFO on her left leg everyday. An AFO is a brace to help her walk. If she doesn't have it on she tends to try to walk on the top of her foot and not the bottom bc the muscle in her leg/foot are so weak the foot doesn't bend up when she takes a step. She has to at least wear a sock with that one. Sometimes I do leave the sock off the other foot. I have tried looking for seamless socks but they are hard to find. Her orthodists place has them but they are $15 a pair. I do think I hit the jack pot with Babies-R-Us because I did find a pair there for $2.50 a pair. I bought one pair to try out, if it works I will go buy more.

She started OT This past January. I don't see much improvement but I know it will take time. In the car I carry a blanket so when the car turns into the direct sunlight she can cover herself. I will definitely try the strap covers. Never thought of that for her, I always related them to infants.

This seems like a "forever" thing and it just scares me that I won't be able to handle it but I know for her it is a lot worse to actually go through it. I just need others who know what I am going through to talk to.
Thank you

Sarah
mom of 4

Hi Sarah,

Welcome! You sound as if you're doing a great job helping Brianna find strategies and have the resources to cope. I think we've all had to just work our way through it and help our children communicate exactly what they need. As you say, at 2 (or any age really) there's always the concern that you are "disordering" the "normal" or perhaps ignoring something you should be taking notice of.

I always found sunglasses useful for reducing the amount of eye contact you had to make with strangers in public!

If her feet are a bit on the bigger side, you can look into sports socks by Hanes. They're seamless and like $4 for a set of 4 or something. Most sports socks are, I think they realized seams can cause blisters if you're running or stuff like that.

Take care! Feel free to pop into the live chat, there's usually always someone around.

If the tantrums are occuring in a room you can control the light levels in, then try turning off all the lights during the tantrum.

Turning off the other elctronics in the room may also help light/sound sensitivity.

See if that helps your child to calm down.