Summer + Routine Changes = Trouble!

Ahh...summer! It's here! Which for anyone with a child suffering from SPD or autism knows summer requires a schedule change. Little Miss does not do well with any sort of change, so the past two weeks have proved pretty difficult. It is going to take time I'm sure and then just as soon as we all get used to it it's going to be school time again and another schedule to get used to all over again. Great!

The past two weeks have been filled with tantrums, meltdowns, restless nights/naps and decrease in appetite for Little Miss. The meltdowns and tantrums I can handle...or at least try to, however, the restless nights/naps and lack of appetite worries me. Little Miss and Little Man both have enzyme deficiencies in their GI tracks (they were both born without the sucrase enzyme in their GI tracks) which means that they need a special diet to stay healthy, strong and keep them growing and stop them from loosing weight. Since the schedule has changed (or slightly before it changed) Little Miss has been barely eating. I haven't noticed her loosing weight though but I might if I was weighing her everyday...I don't know.



Since Little Miss is so difficult most of the time and obviously doesn't do well with changes I have yet to start her on this special diet of no sugar, no juice, no fruit, no high fructose corn syrup and so on. It sounds selfish of me (ok it is) but I am just picking my battles at the moment. We had her IFSP on Friday and decided that since I have all three therapists here three days (1 day each) a week then we need to start this diet. And let me tell ya, I'm nervous and IT'S.GOING.TO.SUCK!!! We're going to have tantrums and meltdowns times 4 (breakfast, lunch, snack and dinner), she is more than likely going to be eating and drinking less than she already is and I wouldn't be surprised one bit if she gets admitted to the hospital like Little Man did because of a surprising weight loss and dehydration. We'll see!



It's bad enough having three semi special needs children, having them all at home with different needs and wants, summer home schooling my oldest with her regular school work and her vision therapy, trying to keep them busy and happy while we wait for our new swing set and now to add on top of all that we're going to start something completely new to Little Miss. I'll be praying every night that I don't loose my mind...at least it would be a short trip though! ;)



We're going to be having family days all summer on Tuesdays which will be fun. BBQs, fun trips to local parks, museums and festivals and just being together as a family. It's usually pretty difficult to even go to Wal-Mart with Little Miss, although she has improved somewhat, so going out on these family days will be fun but probably more stressful then fun. Taking the kids to a big animal park last week was fun minus the tantrums, meltdowns, screaming and strange 'WTF?' looks from strangers. Although, as you can see in the above photo she did love feeding the goats! That 'my child has SPD' sign on her back is sounding better and better. Which brings me to my question in this post:



Question: When you go out in public and your child is having a serious meltdown and you're getting all kinds of looks from bystanders, what do you do? Do you tell people that your child has SPD (or whatever it is that they suffer from)? Do you ignore them and mutter, 'If you only knew' in your head? Or do you do something else? I would love some tips on how to save myself from embarrassment and stares.

Incorporating Sensory Input into Daily Activities

A couple of weeks ago I got a sheet from our Occupational Therapist (who will be coming on board soon) about how to incorporate sensory input into your child's daily activities. I think they're great ideas so I wanted to share them with you.

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BATH TIME: Scrub with washcloth or bath brush, try a variety of soaps and lotions for bathing, play on the wall with shaving cream or bathing foam, rub body with lotion after bath time (deep massage), sprinkle powder onto body and brush or rub into skin.

MEAL PREPARATION OR BAKING: Let your child mix ingredients, especially the thick ones that will really work those muscles. Let child mix and roll dough and push flat. Allow child to help you carry posts and pans, bowls of water or ingredients (with supervision, of course). Let you child tenderize meat with the meat mallet.

GROCERY SHOPPING: Have your child push the heavy cart (as long as the weight is within their capabilities). Let your child help carry heave groceries and help put them away.

MEALTIME: Encourage eating of chewy foods and drinking out of a straw. Try having your child sit on an air cushion to allow some movement. A weighted lap blanket may be helpful as well.

HOUSEHOLD CHORES: Allow the child to help with the vacuuming or moving the furniture. Let the child help carry the laundry basket or the detergent. Let the child help with digging for gardening or landscaping.

PLAYTIME: Reading books in a rocking chair or bean-bag chair may be beneficial. You can help your child make up obstacle courses in the house or yard using crawling, jumping, hopping, skipping, rolling, etc. Listen to soft music. Play the sandwich game (child lies in between two pillows and pretends to be the sandwich, while you provide pressure to the top pillow to the child's desired amount.) Ask them "harder or softer?" as you push on the pillow. Some children will like much more pressure than you would expect. you can also go for a neighborhood walk with a wagon and have your child pull it (make it semi-heavy by loading it with something the child would like to pull around). You can do the same with the baby-doll carriage. Swimming in a pool is a wonderful activity if you have that available,, as are horseback riding and bowling. Mini or full-size trampolines are excellent for providing sensory input as well. Make sure the child is using them safely. Sandboxes or big containers of beans or popcorn kernels can be fun play-boxes too if you add small cards, shovels, cups, etc.

ERRANDS AND APPOINTMENTS: Before visiting the dentist or hairdresser try deep massage to the head or scalp (of tolerated), or try having your child wear a weighted hat. Try chewy foods or vibration to the mouth with an electric toothbrush. Let your child wear a heavy backpack (weighted to their liking with books and with the straps padded as needed). Be sure to give the child ample warning before any changes in routine or any unscheduled trips or errands. Many children with SPD need predictability.

OTHER GENERAL GUIDELINES FOR THE HOME:

~ Keep routines and possessions organized.

~ Be consistent with rules and consequences.

~ Keep an activity schedule or calendar posted.

~ Create specific routines for troublesome times of the day (bedtime or getting ready for school).

~ Discuss upcoming anticipated changes in routine at a point in time that is beneficial for your child. You will have to experiment with how early the child "needs to know".

~ Try to indirectly use your child's sensory preferences for fun rewards to help you handle behavior. For example, having your child work towards an extra trip to go bowling or horseback riding may be helpful. However, try not to restrict movement activities when you child is being disciplined. For example, taking away recess time or playground time for not sitting at the table appropriately during dinner may not be the most effective way to deal with these issues. Your child may need movement time, and by removing it, his or her behavior may actually become more difficult later.

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Try some of these suggestions and let me know if they work for you. I'd love to hear feedback if you do them. I would also love any tips that you can offer on how you deal with your child's tantrums, behaviors, etc.

Our experience with Therapeutic Listening!

A week or so ago I told you all about Therapeutic Listening and that children with SPD, among other things, can benefit from it. I also told you how it can make your child sick if not done properly. TL is very strong and should not be fooled around with. Well now I have my own proof to that.

Last week Little Man was at his weekly OT appointment. After about a half hour he and his therapist came out and she told me he had thrown up. He was white and when I say white I mean he was as white as rice! You could tell he didn't feel well. His therapist, who I really like, said that she thought it was because he was in the swing while doing the TL and was in it too long. I felt so bad for him and so did she. But after about 20 minutes, some water on his face, some water to drink and some down time he was back to his normal hyper self.

This past Monday Little Miss had an awful day! She was throwing tantrums, having major meltdowns and was very clingy, screaming and crying, etc. and so on. Nothing I did made any difference so I decided to sit her at the table with her TL headphones on and give her a sensory activity to do along with it. After about 10 minutes she was done. The strange thing was she was worse then she was before. I finally had to put her in her crib because I was afraid she was going to hurt herself (she bangs her head against things when she gets in one of these meltdowns.) After about 5 minutes I got her out of her crib and sat her down for dinner. She ate and ate and ate! All together she had about 4 kid sized plates of pasta, applesauce and cauliflower. She was an empty pit that wasn't getting full. She has been behind in communication but has been getting better with ST, OT and DT so she is saying some new words and new signs.

I spoke with her OT about it yesterday and she said that is was probably because she was so hungry and didn't know how to tell me and the music made her stomach hurt. Well then I just of course felt terrible! So now we are working on the "eat" sign! So my whole point is that even if your therapist helps you with TL and tells you what to do you need to be very observant of your child so that if they begin to feel sick you notice and stop the music. Having a child with sensory issues and having them not feel well equals major meltdowns!

This is my first hand experience with TL and my kids being overwhelmed by it. Please be careful when you do TL with your child(ren). Don't ever attempt TL on your own without the supervision and advice of your therapist!

For those of you that already do TL with your child(ren) here is a small list of things you can let your child do while listening to the music to give added input.

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Sensory play activities to pair with headphones and music:

~ Washing cars in a basin or bowl

~ washing babies in a basin or bowl

~ yogurt or pudding paint on paper, mat or themselves

~ magnets on a pan

~ sorting balls, cereal, etc in muffin tins

~ markers, crayons and paper

~ bingo dabbers

~ puzzles

~ necklaces made out of cereal

~ hide small beads in some playdoh and let your child go through and pick them out and sort them however you want.

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Do you have any more suggestions that we can add to this list? Please leave your suggestions in a comment!

Don't forget about Therapy Thursdays!

Don't forget about Therapy Thursdays. If you would like to submit a question for this weeks Therapy Thursday please email me at bloggymommy3@yahoo.com by tomorrow evening so I can get the email over to one or both of our therapists to answer. Thanks and hope to hear from you soon! :)

**Oh and just to let you all know, I will be hosting my first review and giveaway here on the SPD Life sometime next week so make sure to check back!**

Join us for Therapy Thursdays

Hello everyone and welcome back! I am here to tell everyone that now on Thursdays we are going to have something called Therapy Thursdays. All you have to do is email me or Michelle with any questions or comments that you want either heard or answered and we will put them in a post with the advice from one of our therapists on Thursdays.



We are bringing two therapists on board to help with questions, comments, new ideas and so on. They are Little Miss' Developmental Therapist, April (we will post her intro as soon as we can) and Little Miss' Speech Therapist, Shireen (who has already posted her intro). Please give them a warm welcome and have your questions and/or comments in by Tuesday of each week so they have time to answer all of them.



From time to time they may also post links to new places for you to check out, new ideas on different therapy ideas, at home recipes for you to try with your youngins and so on. I can't wait for our first Therapy Thursday which will start next week. So mark your calendars and submit your questions by Tuesday. See you all then!

Interview: Lori's Child

Ok everyone here is another new interview. Lori found us and asked to do an interview. She adopted her son from China and recently found out that he has SPD. Please give her a warm welcome and show her some support. Thanks!

My name is Lori and I am a 43 year old stay at home mom to one child, "M". Our family -- "M", and my husband and I -- live in the Ohio.

~ How old was your son when you adopted him?
"M" was 10 months old when we adopted him.


~ What was his life like before he was blessed with you?
"M" lived in an orphanage for the first 10 months of his life. We did not get to visit the orphanage, but we did see pictures of it and it appeared to be in good repair, well kept and clean. His primary caregiver had 7 children that she cared for at the orphanage. When we adopted him, his head was very flat on the backside indicating that he spent most of his time on his back in his crib. He also held his arms at an odd angle -- at 90 degree angles to his body, which is the only place he would be able to see his arms if he was lying down. The flat head has corrected itself and the odd arm holding disappeared after a couple of months with us.

~ How old is your son?
"M" is currently 28 months old.

~ When did you first notice that something just wasn't 100% with your son?
We always thought that something was different about "M". The adoption agencies always tell you that it takes about a year for these kids to catch up. At 10 months old, "M" could not sit up by himself or roll over. In the first few months he did catch on to lots of things pretty quickly. I remember the first night he rolled over he was about 11 months and he did it all night because it was so exciting to him. He did not sleep a wink that night.

After we had "M" home for a year, it just didn't seem like he was catching up anymore. In fact, in some respects it seemed like he was falling further behind. Also, he mastered things in very strange ways. For example, he would walk between my husband and I at about 13 months, but he completely stopped doing that after about a month. I attributed it to the fact that he had learned to crawl and that was good enough with him, but he did not attempt walking again until about 20 months. He mastered using a spoon at about 18 months. Over the last 10 months, he has regressed with respect to utensils. Sometimes he will use them like a champ for several weeks and then refuse to use them for several weeks. Right now, he is refusing to use any utensils or plates. He learns new words and then never uses them again. Occasionally, he will revert to crawling.

The biggest thing that clued me in to a potential problem was the fact that "M" did not "play" with toys. He just mouthed them and put them places -- even at 2 years old. When in a group play setting, "M" did not participate -- just fluttered around the edges doing his own thing. "M" does not like to crawl up on things, go down sliding boards, ride on riding toys or play with balls (he just hugs them and carries them around -- very sweet but concerning).

~ When was your son diagnosed? And how old was he?
"M" was just officially diagnosed this week, though I did my own diagnosis weeks ago. The way it all came about was very strange. We had been seeing an occupational therapist since October for help with "M's" fine motor skills. At one appointment in January, "M" was acting up, throwing tantrums, not wanting to participate. The OT suggested that "M" may benefit from a brushng protocol. She explained it to me and I thought it sounded very strange. I went home and did some on line research and discovered Sensory Processing Disorder. At this point, no one had told me anything about this disorder. I got several books and read them and knew that this is what afflicts "M". It was kind of like being told you need to have chemo for a liver problem, going home and looking on line to find out what chemo treats and finding out you had cancer -- strange! I knew I had to find a local "expert" to help us and I was able to do so. We met with her this week for an evaluation and she confirmed what I have known.

~ What kind of therapy (if any) does your child receive?
"M" currently receives Occupational Therapy once a week and Speech Therapy once a week. We are seeing the Physical Therapist who is the Sensory Processing Disorder expert twice a month and an Early Intervention Specialist twice a month.

~ Do you feel like the therapy is helping?
I have not had an overhelming feeling that any of our therapies are helping tremendously and I feel like it is because of a lack of focus on SPD thus far. Now that all therapists involved know about "M's" sensory issues, I feel like we are going to be getting more focused therapy and that we should see improvements.

~ What is your biggest challenge that you face with SPD?
I think "M" is so inhibited physically that it is affecting everything he does. That is "M's" biggest challenge. My biggest challenge is finding enough time in the day to get all of his therapies completed, get play time in, feed my family, get "M" to his multitudes of therapy appointments and still find time to clean my house! AND I'M A STAY AT HOME MOM! I really don't know how anyone who is working can keep up with it all.

~ What are some of the things you do with your son to help them during a meltdown or tantrum?
"M" responds well to giant bear hugs. Also, if I can get him to laugh, we are done with the tantrum. Tickling sometimes does it for him and I know that sounds strange as many children with SPD do not resond well to tickling. It seems to work for him. His latest thing is hitting and head butting -- that is a challenging one as I sometimes cannot get close enough to give him a hug without getting a head butt to the lip. In fact, I had a bloody lip just this morning.

~ What are some of your son's symptoms?
"M" has a very interesting way of eating. As I described above, he refuses utensils and plates but that isn't the only eating issue. He will put food in his mouth, chew it and then spit it out. He has done this since he started eating table food and we, of course, had hoped he would "outgrow" this lovely trait by now, but he hasn't. It makes for some very messy meals.

"M" has very distinct "good" days and "bad" days. On bad days, he just wants me to hold him and listen to music. He walks around crying alot. Thankfully, we have not had a full blown bad day since early January. Can that be because of brushing as that is when we started? I'm not sure. Good days are peppered with lots of giggling, lots of energy and lots of energetic head shaking and ear covering. We have tantrums on both kinds of days.

~ How do you deal with your stress?
I have discovered the awesome benefits of strenuous exercise. I get up at 5:20 to get to the gym by 6 and home before "M's" dad leaves for work. I know I'm going to be exhausted by "M's" naptime anyway, so since I'm going to nap at that time, I figured I might as well get up early. It is also of huge benefit in handling my stress to interact with other parents who have children with these same issues.

~ What is something you want all parents of children with SPD to know?
I don't really have enough knowledge to answer that question yet but there is something I want all parents of ALL children to consider. It seems to me like MOST learning disabilities are based in some way to sensory issues, and our local "expert" agrees. If parents don't address them properly then they may just end up on the ADHD/ADD drug bandwagon needlessly. Also, if you THINK that something isn't 100% about your child, you are probably right. Find out what it is because the younger your child is when these issues are brought to light, the easier they will be to remedy. It could mean the difference between 6 months of therapy vs. years of therapy. These aren't issues that children just "outgrow", they grow around them making it more difficult to get to the source.

Thank you for interviewing me! I hope I've been of some help to someone.

If you have any advice or kind words for Lori and her family please leave a comment. Let's all give her a big thank you for joining us and telling us about her and her family.

Thanks Lori!

Tonight's tantrum.....

*Sigh* Tonight's tantrum was quite a doozy... It lasted for 25 minutes, and it was over chips. Yes, potato chips! Little Man has decided that he's on a hunger strike, and will only eat whatever junk food is laying around. Tonight he found the snack pack of individual chips -- dorito's, frito's, cheesies, etc. A little boy's dream!

So when we got home, I gave him a bag while I was getting everything ready for dinner. 45 minutes later, he grabbed another pack and kept shoving it in my face to get me to open it. He kept screaming "chips", "chips", over and over again. I tried ignoring him, but it just got worse.

He threw himself on the ground and started hitting his head on the floor. He rolled around and screamed, all the time yelling "chips". I tried picking him up to calm him down, and he hit me in the cheek.

Finally, after 25 minutes he calmed down. How did he calm down? I gave in and gave him the chips.....

YES, I know that was probably the wrong thing to do, but what was I supposed to do? I really saw NO end in sight of the tantrum. When he gets in those moods, I just feel helpless. I have no idea how to help him. The O.T. really can't offer any idea's, because she's never seen him like this... I just don't know what to do!!

Any suggestions?

Yoga ball therapy!

Sounds weird...I know, but man does it work! Our Speech Therapist recommended that we try using a yoga ball to help Little Miss. Every day, about five or so times, I lay her on her belly and roll her around on the ball for about 5 minutes. Then I change and lay her on her back on the ball and roll her around for five minutes. Then I sit her on the ball and bounce her for another five minutes. She loves it!!! She brings me the ball and tries to climb on top to start 'playing'. When I lay her down on it she lays her head down like she's gonna take a nap on it! The best part of it is that to her it's fun but to me it's therapy for less meltdowns!

So far I've noticed that she has had maybe one or two less meltdowns a day when we do this. Which is great!!! This will help her feel more relaxed and less frustrated throughout the day which in turn means that she will be a little more laid back to learn new things; new words, signs and so on. In the past two days she has started saying, "I KNOW!" in a really cute, happy voice and has even said "hot" to something when in fact it was hot. So now she knows the difference between hot and cold. Before she didn't really understand the difference. And it's great because now when I tell her something is hot she knows what I mean. Some months ago she got a hold of my coffee that I had just poured and tried to take a drink when I went to answer the phone. She ended up spilling it all down the front of her and since she doesn't feel pain correctly she didn't cry or even whimper. That scared me a lot! What happens if she really gets hurt one day and I don't know it? Well now I can rest assured that when I tell her something is hot she won't touch it!

So can I say all of this is due to exercising on the yoga ball? Well...no, but I think that it did play a small part in it. The rest I'm sure is her getting therapy, me working more with her and her getting a little older. But whatever it is I'm sure glad we're starting to see a little change for the better!

Tantrum Strategies (ARTICLE)

This article was given to me by Little Man's O.T., and hopefully it can help some parents out!

1. BEST TREATMENT: PREVENTION

a. Pick your battles: Avoid confrontations when it really doesn't matter. If they are not at risk for harm or harming something, give them time to get bored and try to get your way later.

b. Identify when and where your child has tantrums to see if there are particular triggers. Is it only in public, when they are hungry or tired? Is it during transitions from one activity to another? Knowing this info will help you prevent tantrums.

c. Be careful about setting yourself up for a NO answer. Do not ask your child a question if they don't have a choice to make. "We are going to leave now, okay?" is better stated, "We are leaving the store in 1 minute". Don't ask, "Do you want?" If you can't have the answer no!

d. Make a big deal often during good behavior that your child does. The key is letting your child know what pleases you and will get positive attention for.

e. Give your child cues that will help them prepare for what lies ahead. Sometimes telling a child when they have 5 minutes, then 3 minutes, then 1 minute until a transition is to occur helps them prepare for a change.

f. Always leave a small toy handy in your bag for distracting or providing an activity for those tantrums caused by boredom. If the toy is reserved only for when you are 'out', the interest in it will last longer.

2. DURING A TANTRUM:

a. Stay calm! The crazier they are, the calmer you need to be!

b. Let them know that you understand what they want, but that it is not going to happen now, then you stop talking!!.

c. Be careful not to reinforce the tantrum with extra attention and words that may actually be encouraging or rewarding the tantrum. Kids want our attention more than anything and often even negative attention is better than no attention at all. to work effectively, a tantrum needs a sympathetic audience.

d. Use isolation when ever possible for the tantrum. Establish a routine with total predictability. Put the child on a soft surface and IGNORE them for a few minutes, staying close enough to make sure they are safe. Occasionally reassure them that when they are calm, they can go play.

e. If they get up and move, do not chase them but make sure they are safe. If they are tearing up a room, then hold them on our lap tightly until you feel their arms and legs surrender. Holding can be reinforcing for some children.

f. Some kids can't calm themselves, and the tantrums last for longer than 30 minutes. These kids sometimes need to be rocked and held quietly when it appears they are 'stuck' and can't calm themselves. Sometimes giving them a pillow and a favorite blanket helps them to calm.

g. When the tantrum is over, let it go. Give them a hug and let them know that it is their behavior you don't like, but you love them all the same.

h. BE CONSISTENT with your words and actions. It is normal for tantrums to increase in order for your child to see if you react the same way every time. If the tantrums then decrease, your strategy is effective!! If the tantrums do not decrease, then you are doing something that the child finds reinforcing!!