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Overwhelmed and not sure how to proceed - Seansmom - 01-01-2013
Hi there. My son is 6 years old, and I'm convinced that he has SPD. I've always known that something was off, but I couldn't convince a medical professional or Early Intervention when he was younger. He only survived 9 days of Kindergarten this past September, when I made the choice to homeschool after a lot of prayer. The school was starting the process of doing a Child Study Team evaluation, but I just couldn't bear to see him in so much stress and pain. They also were not handling his bathroom issues well (he doesn't know when he has to go). I took him to a private Psychologist, and he was diagnosed as ADHD-NOS, but I'm just not convinced. They are pushing meds, as is my pediatrician. The good thing from that evaluation was the recommendation for an OT evaluation. We went one time, and the OT gave me a lot of paperwork. I've been reading a lot on the Web, and SPD really seems to make sense. But he hasn't been officially diagnosed. Do I go back to the pediatrician? His office gave me a script for the OT, but I haven't talked with him about SPD, just ADHD. I'm also not sure what how to proceed with his bathroom issues, he has been seeing a GI specialist, but after treating it solely as a withholding problem and daily laxatives, he is still having major issues. I pushed for further testing, and the results are consistent with SPD in my opinion, but the GI specialist doesn't seem familiar with SPD. Oh, and he had an abnormal thyroid reading, so we're having that tested again. We see the OT again tomorrow. Do I ask her for a plan? I feel like I have a few pieces of the puzzle which is my son, but I don't know how they go together yet.
RE: Overwhelmed and not sure how to proceed - heather40 - 01-01-2013
I went to a Developmental Ped at a Children's hospital for my son's diagnosis. A regular ped can't diagnosis they really don't know. They are like a GP for an adult, physicals,coughs, colds, etc..... The OT should be able to give you an idea as to what is going on, feel her out and see what she says, express your feelings as to what you have researched, if she does not agree then get a little bit more assertive. What other SPD tendencies does he have: smells, sounds, touch, textures, sensory seeking, etc.... what other things do you see at home and when you are out. Does he have a hard time transitioning from one thing to another.
I think you made a good choice homeschooling him while you figure things out ( or forever!
), but the social interaction is very important and I am sure you are aware of all the awesome homeschooling groups and activities. I homeschooled my older son for 1/2 of 1st grade but my SPD child would not allow it so that was the end of it! lol He was very demanding in the beginning, but he has come a long way!!!!! So things will be fine once you get the information you need to find your way to help your son everything will be ok. I have never given my son meds, so I don't know about any of that and he doesn't have the other issues. Good luck, stand your ground , don't be intimidated, and if you do not feel he connects with this OT try another. Remember after some sessions he will be even more out of whack but will transition eventually. Keep us posted and drop a line anytime!!!!! Good luck again!!!!!!
RE: Overwhelmed and not sure how to proceed - Seansmom - 01-01-2013
Thanks so much for your kind response! In retrospect, there have been so many signs of SPD all along, but I didn't know what to make of them. I don't know all of the SPD terms, but I'll describe what I see as SPD symptoms. He hates to write, has poor penmanship, he hates paint and glue (too messy). He is a very picky eater and is sensitive to strong food odors. We had pork and sauerkraut for New Years (local tradition) today and I had to light a scented candle to get him to sit in his chair instead of hiding from the sauerkraut smell under the table. He wouldn't eat his roll until the offensive food was off the table. He hates groups of people, especially crowds and strangers. He bit me in the mall yesterday in the middle of a meltdown. He can't stand public bathrooms with noisy hand dryers and/or automatic toilets. He loves to pet our cat, but is frequently unintentionally too rough. He compulsively picks at his thumbs and washes his hands "because they're hairy" (he says crayons are hairy too). He is hyperactive, but complains that he's tired all the time. He will also complain about being hot when it's cold outside. He is a sensory seeker, if I understand that term correctly (jumping on furniture, amusement park rides, playgrounds, video games, etc). He has poor gross motor skills (swings, riding a bike without training wheels, playing catch). And the list goes on
. I feel like I need a plan in place to deal with the big picture, especially the toileting problems, but I'm not sure who the appropriate person is to get that plan in place.Oh, and yes he has a terrible time transitioning. We got him a watch for his birthday, and that has been very helpful with transitioning, since it gives him a sense of control about when to stop, or how long something will last. We joined a homeschool co-op, but he is having trouble in the group setting (as usual).
But I have to admit, there are upsides, sort of. He can't tell when he is sick, he will insist that he is fine up until the moment he is vomiting. So I never have to deal with him exaggerating or faking illness. Unfortunately, though, I think it has the same root as his inability to know when he has to go to the bathroom.
RE: Overwhelmed and not sure how to proceed - heather40 - 01-01-2013
Ahhhhh, now I can help a little! I have a sensory seeker!!!!!! Penmanship- fine motor!!! HE probably hates to do it because it is too hard for him. Toss out the pencil and use something else. Shaving cream if he can tolerate it to draw letters in, allow him to type, that will build fine motor strength and he is still learning his letters for now while building the strength. Have him do at least one writing thing but make it fun! LIke a dot-to - dot or maze.Feed off of his interests that will get him working! If he can tolerate play dough, that is great for it, squeezing it builds strength!!! If not plastic tweezers picking up small toys out of beans, rice, in a container that you can put a lid on and put away when done. With therapy he will get over the paint and glue, believe me!!! lol, but there is always..... Ziploc bag with cornstarch and water mix ( we call it moon mud) and can move finger over the top of the bag and it will slowly move around, give the feeling without all the mess on his hands for now, you can use it for learning letters, spelling, doing math etc. ! balloon with baking soda in it or stress ball for strength in hands.
Ummmmm- sensory seeking!!!!! know this one all to well!!! Heavy work... help carry in groceries; milk, juice, etc... fill wagon with heavy toys. Outside move the landscaping bricks, yeas I am serious, weighted vest, blankets, lap pads. Running , jumping, before you go somewhere.
Punishment: pushups, yes, I know it has been a hit on here! lol I do it, it is great for deep pressure for them!!!
You said about the watch, go with it, get him a chart, let him know ahead of time what he is going to be doing, set a timer if possible for when that task or whatever will be done or show him on his watch, get a cardboard clock and set it to show him what it will look like on his watch! ( learn time telling as well!)
Smells: My son won't come in the kitchen if I make oatmeal, eggs, asiago cheese lol . He will only eat white American cheese not the orange colored one! I think until you get a little further with some therapy I would let this one slide, but remind him that sometimes you might be somewhere and you will just have to smell it. There is always the reminder that life is not always planned out and sometimes things just happen , that is very hard for my son, I never realized how much I discuss with him about what our day is going to consist of before we do it, but I always throw in things could change and our plans might go as we hoped. Try to avoid that meltdown!!!! Let him know in advance we are eating something stinky tonight, and make a joke out of it, like stinky sock stew, maybe he will want to help.
I remember a time when my son was younger and we were in the store he started screaming and putting his hands over his ears because of a noise that probably only he and a dog could hear. I had to leave my cart and go. He is young enough where you could get him headphones or let him have an ipod or something that plays music while you are out in a situation like that if he can tolerate it. My son wore headphones to the show , parades, (still those). He is pulled from lunch to eat in a quiet room and only goes to 15 minutes of music class because he cannot tolerate the different pitches of the singing, the instruments are ok, but not the singing. Or for the public bathrooms let him know that you will have paper towels in your purse and he will not have to use the hand dryer, but someone might be, but he won't have to.
The being rough is because of the sensory seeking, they just don't realize how rough they are being. I think poor gross motor comes with the territory, my son still has yet to ride a bike he is 8, he loves his scooter though. He is determined to learn.
Gradually ween him into the group, let him know that he will be allowed to take a break from the group after he is with the group for a period of time ( again the watch), get him picture cards that show him his day , what he will be doing at the co-op this might help him want to be a part of it. Sit fit cushions are great, my son has used his since pre-k. Finger picking, get him a fidget toy, therapy shoppe has a ton of great items for fidget toys!!!! If you have an idea of what you are going to be doing in advance in the co-op that would be great then you can prep him as to how his day is going to be with possible changes.
My son takes everything VERY literally, so I always have to be careful of my wording, one time I told him we had to "run" to the grocery store. He was not happy, he told me " We are not literally running to the store, are we?" I almost died! First I did not know he knew the word literally, and that is when I realized how he "literally" takes things!
I just asked my son what he does when he has to be around food that stinks, he said he puts his shirt over his face. lol I honestly don't have a clue about the bathroom issue, sorry. If you are not sure ask him, what would make you feel better, like the crayons, what makes them hairy and how can we make that different for you. If he can help you out verbally with his needs ask away!!!! Otherwise it is a guessing game until you hit it! I will try and think of some other things. Look online too for more fine motor ideas that he can tolerate. Have a great night!!!!!!
RE: Overwhelmed and not sure how to proceed - Seansmom - 01-02-2013
Wow, that is a lot of great information, thanks! It's so nice to have validation as well. I'm still having trouble finding a balanced perspective with what I should expect from him. How much should I accommodate his sensitivity and how much should I try to desensitize him? Do I prevent meltdowns at all costs (even if it means we hole up in our house like hermits)? I know I need to make changes in my parenting, but I want to do it "right," and I'm not sure what that is yet. Is there a parenting book you would recommend? Thanks again, it's wonderful to talk to someone who understands and doesn't dismiss me, look at me like I'm crazy, or judge me.
RE: Overwhelmed and not sure how to proceed - heather40 - 01-02-2013
I think as time goes on tighten the ropes a bit so to speak, I just always throw out there reminders. You cannot stay in your house. I remember dreading going out to dinner, I would have to pack a suitcase of things to bring to get him to sit until we scarfed down our food. I have friends who have children with Autism and they have taught them to "blow away" the meltdown so they literally blow when they feel it coming on. You need to find coping skills that work for him. I have found that SPD kids are visual so he might be able to picture that in his head. YOu can never stay in the house, we all have to face life and he needs to learn to face it he just needs some accomidations. You have to always remember to put yourself in his shoes. It has to be horrible to feel that way all the time, if you read some of the posts that the adults on here that have SPD you can get a better perspective of what your child is going through. Someone posted on here ( I can't remember which thread) but it was really good, it is like wearing a scratchy wool sweater all day everyday but amplified, everything is amplified and actually causes them pain. There is a post on here regarding headphones that someone put on, that can help you a lot regarding his sensitivity to sound. There are just some things that you might always have to make accomidations for but teach him the coping tools to deal with it appropriately. When it gets too loud for my son he will scream! ( That's always lovely!) What I was told by my son's OT, once they have the melt down it is too late. It takes a long time to come back from a meltdown. SO teaching how to cope with a situation before it comes on is something that would be important, but not staying home. Think about what causes his meltdowns, you said at the mall the other day. That is a overwhelming place to be. So many things coming at him, the sounds, lights, colors, so figuring out something that will make him feel safe and secure while there, block out the sound, Stop in a quiet store that maybe he likes after walking around for a bit, a book store, coffee shop have a treat. My son used to sob when he saw the big red Target symbol. lol But I am sorry we were going in, now it is his favorite store! lol
I think you are parenting him right, you love him and you are looking for ways to help him that is more then anything that you could ever do! I think learning more about SPD will help you rather than a parenting book, learn how to set up his sensory diet ( not food), learn about what is happening to him then look for different therapy tools you can do at home to help him out. Most you can make on your own and do not need to buy. Once the OT kicks in you will get a wealth of information, changes will happen but sensory overload will happen first. It took my son three months to transition into third grade. IT was awful he was a mess, but now he is doing awesome again! Growth spurts I was told can cause a sensory overload, so sometimes when you think all is well.... BAM!!!
Today we are going tot he mall with some friends to go to the glow golf inside. I have weights on my chest, he gets totally frustrated when the ball does not go in the hole, but you know what too bad, we need to learn. Also, my friends daughter has SPD with a sprinkle of a learning delay but she is on the completely opposite of him and is very slow moving, very slow thinking, and talks silly nonsense. It makes him crazy! He is fortunate to be highly intelligent and cannot understand why she talks the way she does because it does not make sense. So between the golfing and that it should be the longest hour of my life!~ lol, but they love to be together and are excited about golfing! Go figure! So before we go I have to remind him to have nice words to her and we will not always get the ball in on the first try.
So again I have written you a novel. lol So my final words are...... do not ever worry about what other people think about you or your child's behavior. Don't worry about if someone is judging you. You are doing what you should do, you sound like you are a GREAT mommy and don't listen to anyone who judges what you do. Your only concern is your son and (pardon my French) but screw those who have something to say or stare! They have NO idea what you go through on a daily basis. We aren't given more then we can handle and we are given these special kids for a reason. My son has given me days where I fell over with exhaustion, but he has given me more laughs, beautiful pictures,and jars full of dead bugs and baggies of slugs!!!!! I would not trade any of it for a child who can sit still in a restaurant or play on a football team. You keep on doing what you are doing!!! We are all here for you anytime you feel overwhelmed or just need to vent! Have a great day, have to get ready to go for my golfing fun! lol ( sorry I am so long winded! )
RE: Overwhelmed and not sure how to proceed - Seansmom - 01-03-2013
Thanks again for all of your encouragement and advice! We went to the OT yesterday and I really like her, but I didn't have a chance to ask her any questions. She gave me her email address, so I'll ask them that way. I think I need to get organized, make a list of his problem areas, and go from there. We can't do everything at once, so I want a better plan in place.
RE: Overwhelmed and not sure how to proceed - heather40 - 01-03-2013
Glad to hear!!!!!! Probably be easier to write them to her, you can think about what you want to say and gives her time to answer.
RE: Overwhelmed and not sure how to proceed - LAC1961 - 01-04-2013
I've been in your same shoes. My daughter at 5 was still not potty trained. We saw a behavioral psychologist who was convinced I was just overreacting when she had an accident, which was why she was continuing to have accidents. We finally discovered the Feingold Diet, and after keeping a diet diary for several days, I discovered she's intolerant of citric acid and it was causing bladder spasms. Since we've eliminated citric acid from her diet (no small task), the accidents have dramatically decreased, and when she does have one, it's usually related to a food with a small amount of naturally occuring citric acid.
I agree your son has many symptoms of SPD, most of which my daughter shares, and would benefit from an OT evaluation at least.
Here's a link to another post I replied to, which I'm including so I don't have to retype everything. Welcome!
http://spdsupport.org/forum/thread-834.html
RE: Overwhelmed and not sure how to proceed - stineybeany - 01-04-2013
hello! my son is 5, a sensory seeker, and in need of routine. He also has meltdowns in stores, takes things literally, and will put things in his mouth. I made him a "calendar"- it is a daily chart, similar to what preschool and kindergarten classrooms have. In the morning, we would put up what we were doing that day; for example- breakfast, school, playtime, lunch, quiet time, playtime, grocery, dinner, clean up, bathtime, bedtime. It was a visual that he had a part in and could see that helped him know ahead of time what to expect and it worked WONDERS. Also, we routinely build obstacle courses in our home. (There are limits of what is and is not okay to climb or jump from.) He uses tents, blankets, trampoline, tunnel, etc. We also got him a weighted blanket for bedtime (he has sleeping issues), and for heavy work (which works WONDERS for him), sometimes we have him put toys in a backpack and wear it around. Also try taking a cup with a straw in it with you places, if he has trouble, have him sip from it.
I do not prevent meltdowns, nor do we stay at home; however, we have learned to see them coming and worked proactively around them. If I know he is reaching his limit, I do hurry to finish but I also distract him with a task. If he is not doing well (the holiday season is always rough) I maintain a routine and not overwhelmed him with a lot of crowded situations and loud noises. Part of it is learning triggers and signs, and part of it is accepting that meltdowns will happen in public (and ignoring the stares....ohhhhh the stares and comments I have gotten).
Good luck and stand your ground!