My life with a son with SPD

Sick Kiddo

2009-09-25T18:14:00.001-07:00

Cooper is sick with H1N1:( Poor kid! He looks miserable! He got off the bus last Friday and as soon as I saw him I knew he was getting sick. By Friday night at dinner he had a fever and would not eat anything. By morning he was a hot mess! He missed school all this week with this!

Both of my other sons are sick now and of course like all mothers know.. I am too.. Cooper is by far the worst though. I was a little concerned about that so I called his DAN doctor and she told me that kids on the spectrum have a lower immunity which is one of the things DAN protocol is trying to correct so it stands to reason that he would get sicker then anyone else. Wonderful.

I have to say having been trapped in my house for more then a week straight (we had to skip church last Sunday for sickness and I am sure will not be there this week either) with four, sick, whiny kids has NOT been fun. AT.ALL. Not even a little tiny bit. I am about to go out of my mind to be totally honest. My Mom comes tonight so that will be a much needed respite! She is not looking forward to bringing home her souvenir of swine flu though.

Cooper is doing really well at school and he is still loving it. His teacher is really great and he loves her very much! Cooper is a little funny about it though because when I tell him that I love him he will say "Mommy, I don't love you I love Ms Eve! I love her not all the people!!" Crazy kid!

First Day of school!!

2009-08-13T18:52:00.000-07:00

YAHOO!! The first day of school was Monday and it is going GREAT!! Cooper LOOOOOOVES his new school! Each day he asks me "Mommy can I go back to my X______ School tomorrow??" He always calls it "his X_______ school" and I find that super cute! His teacher is really sweet but not in that over the top annoying way. I am a Yankee through and through so I tend to not like the over the top sweet. Kind of gets on my nerves because it seems fake. Anyway, she is from Boston so she is my kind of peeps;)

Cooper has been doing so great! He has had some potty accidents but yesterday and today he was accident free! YEAH! Man that is the best thing about this school if you ask me! They can help special needs kids potty train! He still does not get the poop in the potty thing but you know I finally got the place where I just don't care. Not that I like it mind you but I just roll with it. It is not his fault and he can't help it so I need to be okay with it. Once I got there I did heaps better with it! Once I do better with it he did better with it.

Oh another cute thing is that on meet the teacher day I bought Cooper a new shirt with his school name on it. Now, when I buy Coop new clothing it is hit and miss on weather or not he will wear it. The school mascot made me wonder if he would wear it. Well, he was very excited about his shirt but when I asked him if he wanted to wear it he said no I want to put it in my drawer. Okay, so we got home and he put it in his drawer. Well, he did decide he wanted to wear it that night to sleep in so we did that. Then I had to wash it (he mega pees at night TMI sorry) and he wanted to wear it to school yesterday "because my teacher likes the mascot and I want to show her." Okay cool! So he wore it... then when it was time for bed he threw a fit. I decided it was not worth it so if you want to sleep in your clothes who cares right?? Well, I set out clothes for this morning but NO he pitched a holy fit that he wanted to wear that shirt again. I had to think and I decided you know what who cares if my almost 4 year old wears his shirt two days in a row???? So he did and he was so proud and happy. Who am I to take that away?

So that is the news about school! He loves it and even with all his food allergies and diet he can buy lunch there which is super. The bus is going to start getting him on Monday and that will be so exciting for him also!

Oh the other thing is that we have decided to stop OT for a while. Cooper qualifies for OT services through school which really just means the teacher meets with the OT once a month to come up with a plan for him. The teacher is the one who implements the OT plan. We want to see how he does with this and if he is not progressing like we expect he will we will start OT with a different therapist. I have never been totally thrilled with his therapist honestly and had planned on changing anyway. She just was not super personable and she would ask me questions all the time which sounds okay except it was always the same questions! I was thinking can you not note this in his chart?? Do we really need to have the same conversation every week?? Then to cement my thoughts she called me this week to see what we were going to do about OT (we told her we were cancelling the am apt because school was starting) and she called me Mrs. Cooper. Really lady? I know you have tons of patients but you have seen him for months and you are HOLDING the chart to get my number! For pete's sake I don't think I am asking too much here. So if we need formal OT again we are going to someone else even if at the same place;)

Meet the teacher day!

2009-08-06T12:14:00.000-07:00

Today was Cooper's meet the teacher day! We went over to his school and turned in all the rest of his paperwork. We also bought him a t-shirt with his new school name and mascot on it which is VERY excited about! I talked to the cafeteria manager also and she was asking me what kinds of things Cooper likes and what we give him with his allergies and diet. The school is a special needs school so there are a number of kids on a gluten/casein free diet and then they will also make sure that things are okay for him with his allergies! They are great about the allergies!! It is so nice to be able to send him and not have to worry!!!

So, today we met the teacher and Cooper got to look around the classroom and play some. It is an inclusion class so there are 9 typical kids and then 5 special needs kids with the possibility of getting once more. There is the head teacher, a parapro and another teacher of some description.

Yesterday was Cooper's IEP (Individual Education Plan) meeting. I went over the IEP and the goals that were set in it with his teacher. I agreed with them because I think they are important it was things like willingly take turns with one verbal prompt 80% of the time and put his things away 80% of the time. I did have them add one goal and that was to initiate and engage in play with another student. Basically I want Cooper to walk over to some kid and say "Hey, want to play dinos?" and when the kid says yes actually do it. Also when that kid comes to Cooper and says "Hey, want to play dinos?" Cooper says yes and does it. His social skills are severely lacking so that is a big thing he needs to work on.

After that part of it the school nurse came down to talk to me. Apparently the word went out about Cooper's allergies because each person I talk to tells me "Oh I heard about Cooper!" I had actually met the nurse when I was there for Cooper evaluation so this was just the formal he is coming to school now (Monday) talk. I gave her the food allergy form the pediatrician had to fill out, all the forms for his medications and a form for permission to administer the Epi Pen and one to administer his inhaler. It was A LOT of forms! I have to go get his meds filled tomorrow so once I do that I will go and drop them off and he is all set! She was also talking to me about the cafeteria and the table he will sit at. They have two tables for kids with food allergies and the kids all sit there. I am not thrilled about that but since they have open containers of milk I don't really know what else they can do. If milk spills on Cooper he WILL get hives so it is probably best to not chance it!

Cooper is going to ride the bus to school! He is really excited about it and we are excited for him. I am not sure if the bus is going to be all set for Monday or not so if it is not I will drive him until it is ready to go for him. It is a short bus with only kids going to that school so I think it will come to the front of the house.

So that is the news! We are getting everything together for school to start on MONDAY! We are so excited for him to go to this school because we know that it really is going to be the best thing for him. I however am going to cry and cry and cry once he gets on that bus!

Hello!

2009-07-28T12:13:00.000-07:00

Sorry it has been a long time! We have been so busy this summer! I went up to my old church camp so my Mom was here with the kids prior to that I spend a lot of time getting everything ready. So, the week with Nana went well and Cooper had a great time:) He went with Jonathan and Emma to VBS at church and from what I hear it went well.

I drove back home with my Dad and when he was here we went to the aquarium and got to watch Grandad scuba dive in the big tank. We also got to do a behind the scenes tour of part of the aquarium. Cooper is REALLY into ocean life so he was in heaven!

We have him off all his supplements at the moment because we have to redo a urine test. Apparently his creatinine came back low and they think I did it wrong. I am really frustrated about that because I know we did the test the way the directions said to and it is a PAIN to get this test done! He is also a total mess off all the supplements. Ugh! It is so frustrating! We keep trying and we are not successful with this at all.

Next week I will have an IEP (Individual Education Plan) meeting for Cooper at his new school. He will then start school on the 10th! YIKES! I am just going to cry and cry when he gets on the bus for the first time!

Other then that we are just doing the typical summer stuff!

VBS

2009-06-22T10:54:00.000-07:00

Our church is having a Vacation Bible School (VBS) for children with special needs this week. I must have been living under a rock or something because I did not know anything about it until the minister said something yesterday during his announcements. So, I brought Cooper today and he LOVED it! He had such a great time!! He asked me if he got to go back tomorrow so we plan on doing that. It is hard to come up with something to do for free with the other three kids for three hours but it is worth it for Cooper. It is too far for me to want to drive home (about 30 minutes) and back there to get him plus it seems so wasteful of gas! Cooper often gets left out of things because of his special needs or food allergies or whatever so it is nice for him to have something just for himself!

It was so cute when I picked him up he was excited to show me his bag and when we got to the car he wanted to show me all the crafts he made. We have also been working on his Bible verse which is Philippians 4:19 "My God will meet all your needs."

Summer!

2009-06-18T12:46:00.000-07:00

We have been having a fun summer! Pretty low key though at this point just lots of playing at home. Cooper has OT each Monday morning but other than that we are just kind of laying low. In July my Mom is going to come here to visit while I fly to there to work at church camp! I am so excited! I went to that camp as a high school student and then worked at the same junior high week forever! Really about 10 years or so I guess (wow!!) but I have not been able to work since I was pregnant with Emma so I am really ready to go back to it!

Other family news is that Hunter needs to be evaluated for speech therapy:( He was in speech as well as physical therapy for a while just after he turned one but he has lagged behind again. I am of course FREAKING OUT that he is going to end up having some of the same issues that Cooper does. He has some similarity to Cooper in some things but not in others, he is social for one but he has never liked to be held so that is worrisome to me. A mother never stops worrying I think!

Someone came today to fill out paperwork and then she will set up a time that someone will come and evaluate him. We are going through county services because of cost and also because they come to the house! I am so over bringing 4 kids with me to sit in countless waiting rooms and they are so over it so this will be so much easier!

When I was talking to Kevin, my sweet husband, he just said "well, if Hunter does have some of the same issues as Cooper then it will be fine because you will be a pro and you will know what we need to do." He is a sweetie:)

Oh the peppers

2009-06-11T12:17:00.000-07:00

We went to the grocery store this morning and when we were there we were in the produce section. Cooper saw some peppers and thought that they looked fun so I told him he could pick one and we would have it for a snack after nap. Well, the choice was hard they had red, orange, yellow and green. First he said he wanted an orange one so I picked one up, then he wanted red so I put the orange back and got a red one, well then he wanted the orange one so I just said "you know what buddy let's get one of each." Phew avoided that melt down right? Nope. About two rows later Cooper started screaming "I WANT GREEN! I WANT GREEN! I WANT GREEN!" He of course now wanted a green pepper. I just told him "no, sorry you chose red and orange we are not getting a green one today maybe we can get one another day."

That makes sense right? He responded to that right? Nope. "I WANT GREEN!!! I WANT GREEN!!! I WANT GREEN!!!" Thank goodness it was time to leave so we went to check out with him screaming his head off. I just paid and we left.

Now this is the annoying part a woman who worked there said, "you are doing a good job Mom I know you want to strangle him!" Um no not really.. then a man in the parking lot said "oh I know YOU have your hands full." Um more than you know thanks. Now, my husband is MUCH nicer than I am when it comes to stupid comments I think because he does not hear them as much. I have learned to just smile and keep walking. What I really want to do is say "that is the stupidest thing I have heard today. Shut your face." That might not be kind though.....

Red Light Green Light

2009-06-05T18:43:00.000-07:00

Sometime along the way Cooper figured out what red and green lights are for well now he is obsessed with them! I mean that literally too! We were going to the aquarium a couple of weeks ago and were driving down a highway, well when Cooper would see a red light at the exit he would start screaming "red light! red light! stop! stop!!!" We tried to tell him that those red lights were not for us but he was not buying it. He also gets really confused when we go through and intersection and he looks out his window and sees a red light at the cross street it sends him into near panic mode. Lights with a turn arrow rock his world! He just does not know what to make of the red turn arrow and a green light hum.. what is that about...

Honestly it is kind of funny, sad and annoying all rolled into one! So no more reading of "Go Dog Go" to Cooper!

SCREAMING kid!

2009-06-03T14:11:00.000-07:00

We started enzymes and the DAN! doctor told me that they have a high likelihood of affecting behavior. All I gotta say is man she is not kidding!!! Cooper has been SCREAMING all day and beating up on his brothers and sisters! Agh! I am tired and I cannot wait for Daddy to get home! We had really planned on going to church tonight but I just don't think Cooper is in any shape to do that:( The doctor told us that this behavior can last 10-14 days and we started these supplements on Monday.... man it is going to be a LONG two weeks.

However, I will say again that God is good! We have been blessed to be able to see this doctor and to go this healing route. We know that these enzymes and diet changes are healing Cooper's gut and in the long run it will help him and that is just a blessing!

I LOVE Melatonin!!!

2009-06-03T10:55:00.000-07:00

We had to wait until we got Cooper's stool, urine and blood testing done before we could start him on his supplements. The blood work was fasting and the lab did not open until 11! AGH! He was not a happy kid!! So we got the stool and urine done this weekend and then we went Monday for the blood work. Monday night we gave him the zinc and melatonin mixed in his applesauce with dinner. He actually went to sleep!!! Holy cow! It happened again last night:) We love melatonin in this house!!

We also gave him a drink called Splash, it is made for kids who have GI problems and it is a type of formula but it seems to be more juice like. Cooper sucked it down and I will give him some more later today. He is supposed to have one a day. Because it is a formula for kids with special problems insurance can cover it if the doctor writes a letter for it. It has helped some with the GI issues also. I am really thinking that will help with the potty training too, it makes sense to me that if he does not have to RUSH to the bathroom it will be easier to learn. We are working on that this summer and I am actually going to try to potty train Hunter also so we are home bound starting tomorrow for a while!

Cooper has also started with his enzymes. He takes 2 before every meal and it is supposed to help with his digestion. He will start on probiotics in a week, the enzymes can cause some bad behavior problems as they change the issues in his gut so we are supposed to do the enzymes only for one week and see how he does. Then we add the probiotics and with those we faze them in. We do half a capsule (just dumped into his milk) once a day for a week and then a full capsule. Then once we get the results from the lab work we will be adding more supplements. I need to create a chart for myself I think....

Testing and County Update!

2009-05-28T12:35:00.000-07:00

Okay, I went last Friday to the DAN! doctor to talk with her about what tests she recommended and to get the supplements that she recommended and had ordered for me oh and to talk about Coop's diet also. So, we talked about the diet first and she said again to stick with the gluten/casein/soy free diet since we are seeing improvement in him. She also gave me the supplements and gave me all the instructions for them, then we talked testing.... oh testing.... We had to get a first morning urine sample, sounds easy enough right? Well, he is three and not potty trained so not easy. We finally got it on the third try! We also have to get a stool sample I am happy (believe me I am the one that has to collect it! I am happy!!) to report that we have two of three. Now for the blood test. Oh man! It has to be a fasting test and the children's place does not open until 11! AGH! The pediatricians office is completely not helpful which seriously ticks me off! So I will have to let you know later how that went but I am going to go with not well!

I went to the meeting on Wednesday with the county to see what Cooper qualifies for if anything. I was kind of confused after my last meeting so this was nice because it clarified! He qualifies for school based therapy which means that he will either be in the county special ed preschool (3 miles from my house) or he will be in a special ed preschool class at a local elementary school. It will most likely be the preschool because it is so close to our house and our elementary school does not have a class because they are so close to the preschool. This is SUCH an answer to prayer because this is what we really think it going to help Cooper!

We will not know until August which school he is in and we will also find out at that time if he is in a total special ed class or a governor's pre-k class with some special ed kids in it. I am going to guess it depends on how things shake out for them with kids they get in between now and then. Either way the teacher is a special ed teacher so it will be great for him! It is a 5 day program and the day is from 8-2 he will also get to ride a bus to school so he will love that! They have a gluten and casein free menu so he will even be able to buy lunch from time to time! We only let our kids buy once a week because the food all schools serve is straight up junk!!!!

We also had a staycation last weekend and we had fun. We went to the aquarium and a local science museum that has dinosaurs. The kids LOVED it!!! The other days we just hung out at home while Kevin and I got some things done. No garden planting though:( We think we don't get enough light in our backyard for it it is not direct sunlight. We also think we are too late for the year so we are going to look into the lighting thing for next year.

This week I am working on potty training Cooper ugh! SO not fun!!! We are going to add Hunter to the mix after his birthday next week so this ought to get interesting really fast!!

Mini DAN! Update

2009-05-19T19:09:00.000-07:00

The DAN! doctor called me about 30 minutes before I was going to leave on Friday to let me know that she needed to reschedule! She said "I am sitting here in my office in the dark, they are doing mega construction next door and they must have hit a power line or something." She offered to just mail me the kits for the tests and talk over the phone but I would rather talk in person. She did talk with me though for about 40 minutes just letting me know some of her thoughts. She said since we seem to be getting results with GF/CF/SF that we should stick with that for the time being. She is going to run a stool test and if it shows a carb imbalance then we can revisit the topic of SCD.

She also recommended some supplements: zinc, probiotics, enzymes and melatonin. Now let me just say melatonin seems like a gift from God! I mean that too I am not saying that flip at all! Cooper does not sleep he gets put to bed at about 7:00 and he does not go to sleep until, on average, 9:00! He is three!!! So the melatonin will help him go to sleep better. We give it to him about an hour before we want him to sleep and it will just help him drift off, kind of like a natural sleep aid. It will also be time released so if he wakes up in the middle of the night it will, well first stop that from happening, then help him go back to sleep. I have high hopes of this helping immensely! I know that when I am tired I am a lot more cranky and snippy and I am sure he is too so maybe if he is getting better sleep we will see some behavior improvement.

The probiotics and enzymes along with the diet change will help heal the gut. There is a school of thought that ASD and like minded disorders are actually often partially caused by a gut problem and if you can fix the gut issue you can help the symptoms. So far I have seen changes in my son so I am a believer! Plus as anyone who knows me well knows I am a bit of a crunchy girl so I am all for natural ways of healing.

Exciting things coming up here are that we are taking a "staycation!!" So exciting! We were going to go visit Kevin's family but they are going to be really busy so instead we are going to stay here and visit some places that we have not gone to near our home. We are also hoping to get together with some friends and just have a nice vaca at home:) We have also been really wanting to plan an organic garden so we may work on that. With six people in the house we go through veggies and fruit like crazy! We think it is a good learning experience for the kids but also a big money saver for us!

Oh and poor Cooper fell at school today. He was washing his hands and he slipped off the back of a stool and banged his chin on the counter. I thought his teacher was going to have a heart attack because I popped in when I heard him screaming. She looked horrified! Not a big deal I was just worried about him.

County Evaluation and Red Socks!!

2009-05-16T10:13:00.000-07:00

Wednesday was the county evaluation. This was the eval to see if Cooper would qualify for county services. Every county in the state offers therapy services to children who qualify, this is past the early intervention (Babies Can't Wait) that ages out at three. Okay, so we went to the eval and there were tons of people there! It was Cooper, me, a social worker, a diagnostician, an OT, a ST, a PT and I think someone else. I worked mostly with the social worker while everyone else watched Cooper play and asked him to do things. I answered 9,000 questions again in fact they used the same form that I have already filled out twice. I need to just get a copy of it and bring it with me next time!

I thought this meeting was just to see if he would qualify for therapy and then if we wanted to send him to the preschool that would be something else but I don't think it was. When I got there they were asking me about Cooper's allergies and if he carries an Epi Pen or anything so when I said that he does they went to get the nurse. Well, the nurse brought me a bunch of paperwork and said that it has to be filled out before he can come to school and then asked the social worker if we were talking about this year or next year amd the SW said next year (there is only a week left this year). So I started off the meeting like "huh??"

Well, then we go over the 9,000 questions from the SW and then the OT came over to ask me some more. After they had asked their questions they went into another room to talk for a little bit while Cooper and I waited. Oh and in the middle of all the question asking someone came and asked me if they could take Cooper downstairs to one of the classes to see how he acted with the other children. Cooper has problems with social interaction that is one of our largest concerns and part of the whole reason we were there so I said sure! Well, they walked out into the hallway and the dang fire alarm goes off!!! AAACCCCKKKK!!!! Cooper is terrified of loud noises!!!! Well, the SW keeps talking to me telling me that we do need to go outside blah blah blah I just tried to politely say "yes, that is fine but I have to go I am worried about Cooper." Sure enough he had scaled the lady who brought him downstairs and when he saw me he just lunged at me! I just held him tight and he buried his ear into my shoulder and I used my hand to cover his other ear. I was glad that they saw that though! The alarm went off pretty quickly so he was fine after a minute. I figured it a school of lots of kids like Cooper so they turn it off pretty fast.

When they got back they said that Cooper was not upset but he kept saying "I don't want to share" and he was backing up into a corner when the other kids were getting in his space trying to check out the new kid. Again, I am glad they saw that. I have found that children can often be like when you take your car to the mechanic and it stops making they noise. They don't do the behavior you are talking about when they are at the pediatrician or the evaluations!

They had told me that I would not get the results until the 27th but that they would give me an idea of what they were thinking before I left. They told me that they already knew he met the requirements of "significant developmental delay" and he would qualify for school based therapy. Now, I am a little fuzzy on what that means exactly. They were talking about him going to school either there or an elementary school with a special needs class, they said it would be most likely there though since it is less then 3 miles from our house. They were asking if he would take the bus, then they said something about if he qualifies. So I am a little unsure about all that. We are really praying that he will get into the school because that is what he really needs! He does not need speech therapy because he talks fine until he is frustrated but if he is frustrated he would really benefit from having someone there to talk him through it.

Also, we had to reschedule the DAN! doctor follow up. I made the appointment and then I realized that Jonathan had his Kindergarten musical performance that morning. There was no way to do both so I moved the apt to Monday. If you know our family picture site check out the video from the performance SO cute! If you don't e-mail me and I will give it to you if I know you;)

Okay and the red socks! Cooper wore red socks! Yahoo! Okay now to be fair I tricked him into it by putting them on when he was distracted doing something but once he realized it he kept them on!!!

DAN! Doctor

2009-05-11T10:50:00.000-07:00

Last Thursday we went to see the DAN! doctor. I ended up having to bring all four kids with me! ACK! Jonathan was having an asthma flare so he could not go to school. We went to the doctor as soon as preschool was over for the day. The kids actually did really well! The doctor has a playroom that is right next door to her office, there is a big opening between the rooms so I could see them the whole time. The doctor was also really great with all the kids:)

So, the doctor talked with me at length about Cooper and all the paperwork I brought. She also asked me a number of questions in addition to the paperwork I had already filled out for her. She was so great and so very very helpful!! I have an appointment later this week to go over her report. She will give me a report about what diet she thinks Cooper should be on (Feingold, SCD or Gluten/Casein/Soy Free) , what blood/urine/stool testing she thinks is good for him and what supplements she recommends. She may up the supplements after we get the testing back also.

So for his diet I really think she is going to recommend the SCD and man I am nervous about that! Cooper is so picky that he will let himself starve to not have to eat something new or something he does not want to eat. This diet will get rid of most things that he will readily eat.

In the mean time we have had him on a Gluten/Casein/Soy free diet. Now, he was already casein free because that is a milk protein and he has a dairy allergy. We also took him off soy a month or so ago after reading some things about soy that we were uncomfortable with. So gluten free was really the only change. Now, it was really not a problem for me we have a Whole Foods Market nearby and I just went to the gluten free section and got a bunch of stuff I thought Cooper would at least try. It can take a long time in some kids to see even a small change with the GF but I will say that I see a change in Cooper and it has only been a week and a half! Gluten can take months to get out of the system but I am hopeful that if I have already seen some small changes in Cooper the long term would be even better. Since changing the gluten thing he has not tantrumed as much and he is just more even keeled. We will see what the doctor says though when I see her again.

Lastly I just want to say Cooper is so stinkin cute! He has been walking around the house all day in a Power Ranger costume:)

Brushing Program

2009-05-04T13:54:00.000-07:00

At Cooper's OT appointment today his OT gave us the brush to start a brushing program for Cooper. We do this every two hours and no less then 1.5 hours before bed. We have done it a few times today so far and it is going well. Cooper doe snot mind it like I thought he would and I did it right before nap and he went right to sleep! He does nap quiker, longer and harder on the days he has OT though so we will see how it works tonight! Like a lot of SPD kids Cooper has a really hard time going to sleep so I am all for anything to make that easier!

We had a good weekend for the most part. He and his older brother have been picking on each other a lot this weekend so I am ready for them to get over that! Othen than that there is not a whole lot going on at the moment. I am still looking into diet information and am waiting on some books that are on their way to me. We took Cooper off all gluten and it was not as much of a pain as I thought it would be, well so far. I am going to talk to the DAN! doctor on Thursday though to see what she thinks the best diet is for Cooper.

Tantrums

2009-05-02T09:56:00.000-07:00

Cooper MEGA tantrums! I mean like screaming at the top of his lungs like you are killing him tantrums. It is so upsetting when he does this because usually he just starts over something small and then nothing can please him. He will start screaming because he wants to ride in the shopping cart (for example) and then you let him ride in the cart then he is screaming over something else. It ends up that he is just screaming and I don't think HE even knows why. I have been a number of places and just ended up walking through the store with a screaming kid. I HATE it! I hate it for him, I hate it for me and I hate it for everyone else that has to hear him BUT I am not going to live like a hermit either!

One good thing I have realized though is that Cooper is sensitive to artificial coloring. If he eats something with artificial coloring in it he will pitch a holy fit within 30 minutes! Man since I have realized that it has helped!

It is funny because when we go anywhere I bring gummy snacks for the kids because they love them and they help keep them under control. Well that was a trigger for Cooper! Yesterday when we went to Target I gave them all natural fruit bars (mashed fruit held thinned a little with juice) and no tantrum! WONDERFUL!

Report Results

2009-04-30T12:36:00.000-07:00

So the doctor gave us the results in the feedback session and he said that Cooper does not have Autism. Now, that sounds good right? Well I don't know if he is right so now I feel like we are back to square one:( I am just SO frustrated!!! I have heard from a number of people that they ended up having to go to 2 or 3 different doctors to finally get a diagnosis so I know that this is not unusual but it is a pain!

The doctor told me that I scored him as having mild to moderate Autism based on the questionnaire I filled out but that their testing showed that he is fine. He told me "he does not have a problem with speech and he is in the range he should be for IQ so he can't have Autism." Huh??? Ever hear of Einstein???? He did admit to me that they test in a room that is lit well for Cooper, it is quiet and he is working with someone who knows how to work with him so the results are not entirely accurate. What???

I am just SO frustrated because I don't see how an hour and a half of testing can overrule his LIFE! AAGHHH!! The doctor told me that Cooper just has "very severe SPD," again I disagree. He does have SPD (duh) but it is not severe more moderate I think.

So, what we are doing now is going to a DAN! (Defeat Autism Now!) doctor and we are getting a second opinion from a Developmental Pediatrician that has come recommended from the DAN! doctor. I will say I don't know if Cooper does have Autism but I do know that it is not just the SPD. Some of the things he does are common Autism symptoms that have nothing to do with SPD.

The DAN! doctor I think is a good idea even if Cooper does not test from the other doctor as having Autism. This doctor is going to do blood work to see if there are vitamins and minerals that Cooper is deficient in. He is very likely to be deficient because he has such a strong self limiting diet. this doctor will work with us to test Cooper and then see what kind of supplements he needs to be on to regulate.

I talked with the DAN! doctor on Tuesday and she was SO helpful! She was so great I just can't say enough about it (I hope I still really like her when I meet her!). I talked with her on the phone for 45 minutes! Like I told my husband any doctor that is willing to talk me on the phone without Cooper being her patient or any guarantee that he will be her patient is a doctor that we need to bring him to! She also was at home! She forwards her business calls to her cell when she is not in the office. I have a meeting with her next Thursday to go over Cooper's history and then I will make an appointment to meet with her with Cooper.

I also am about to call and make the appointments for the developmental ped -it is a series of three appointments. The fact that this doctor is actually going to meet with Cooper and more than once makes me think this may go a little better already! The other doctor never even met Cooper!

Hello there!

2009-04-25T18:43:00.000-07:00

Sorry! I did not mean to fall off the face of the earth but my parents were here visiting and then I hurt my wrist getting ready for our yard sale. I had my hand all wrapped up so I could only type with one hand and it was super annoying! I am better though and ready to fill everyone in.

So.. we have been looking into diet changes for Cooper. I am fairly certain that I am going to put him on the gluten free/casein free/soy free diet. He is already dairy free so casein is already taken care of and I have already taken him off of soy... I just need to add gluten.... the tough one! I have also gotten rid of all artificial colors in his diet and that has really helped!

It is in my nature to put my mind to something and just jump in head first. However, this time I made myself stop and do this slowly. I felt like I needed to just observe Cooper first and see if I could see him reacting to anything and then start taking foods away slowly. This way I can see how he reacts to each thing being taken away (behavior wise) and I can also ease him into it. I just did not think it was fair to him to go cold turkey.

So I have seen an amazingly clear reaction from him to anything with artificial colors in it! It was just amazing to me how quickly I could see him reacting. He would just tantrum like a crazy kid and he would "loose" his words. Just starting with the "eeegghhh uuuggghhh" stuff when he was tantruming instead of using his words. So he still pitches fits but at least he does not have the artificial stuff (which is not good for anyone anyway) triggering it.

I got some gluten free things at Whole Foods last weekend. I love Whole Foods! Man for a mama with kids with such specific dietary restraints it is a life saver! I don't know how I would do it without it! I also have started buying Hunter's rice milk and Cooper's almond milk by the case there. You get a 10% discount when you do so it is totally worth it! I end up saving just a little bit of money but first every bit helps and second I don't have to worry about running out of milk! I get the shelf stable kind so I just put it in the cupboard and I have enough for each of them for two weeks. I shop biweekly so it makes it easy on me!

I have Cooper's results appointment on Monday and I am super anxious about it. I am just nearly certain they are going to say that he is on the Autism Spectrum and I am not that hung up on the label per say but it is still not going to be fun to hear. So I will post again after that to give the update!

Cooper had a really fun day today! He got to go outside and play with Daddy and the other kids when I went to get some things done at preschool. When I got home (5 hours later!!) he was inside running around in a Power Ranger costume pretending he was Spiderman. He could not find the Spiderman costume so I guess that had to do!

We Started OT

2009-04-08T10:46:00.001-07:00

On Monday Cooper had his first OT apt. I was nervous about it because I had heard the place we were going was not the best. I had the plan though that we would go to this place until I could get Coop in somewhere better, something is better than nothing right?? Well I was pleasantly surprised! I had been told to expect that Cooper would just sit in a chair and work on things there and that is not what happened at all!!!

There were two "sensory gyms" that he was in as well as some work in the hallway. First they put him in a hammock on his tummy (the short way) and the OT held his hands and swung him back and forth. She told him to put his head up and he was NOT a fan of that! That is putting it mildly! Then she put some bean bags on the floor, he had to pick up a bean bag and put it in a bucket. He seemed to think that game was so so but he did cooperate. He also worked with some blocks that you spin to connect or take apart and he did well with those.

After that she brought him out into the hallway and he did crab walks up the hall. They were REALLY hard for him so he did not like that in the slightest. We are supposed to be working on those at home. She also put three tables in the hallway and put weights on one of them. He had to push the table to the other table and use tweezers to move some small pom poms from a cup to the other table then back into the cup, push to the other table do the same thing and so on. He did that about three times per table. Next she brought him to the other gym. I could not see what was going on in there (I had all the other kids with me and they would have distracted him so we hung out in the observation area of the one gym) but Cooper told me that he jumped into balls. He was so excited about that!!

After they came back to the gym we could see she drew some shapes on a piece of paper on the wall. Then she brought Coop to one side of the room and did wheelbarrow walks to the paper, he stood up and colored one of the shapes then they repeated the pattern two more times.

After OT he was sooooooo tired and he took a wonderful nap!!! He asked me later if he got to go back so I take that as a good sign!

The Movie Date

2009-04-04T14:07:00.000-07:00

It was so fun to go see the movie with Cooper! At first he was not so sure about it. He has been to the movie before and he knows that it is normally really loud so he was nearly in tears and kept saying "I don't want to see a movie!" Once it started though and he could see that it was not going to be loud he loved it! There was one scary part so he used my hand to cover his ear and he was fine. It was so fun! The movie was really cute too:) There were LOTS of kids there!!

After the movie we went to the Croc outlet and Cooper was not too happy about that! It was noisy and he was restless but finally we got shoes and we were out of there! He was excited to get the new Batman shoes:)

Target Run!

2009-04-03T11:03:00.000-07:00

Man nothing wears me out more than a Target run with the kids! We go to Super Target because they have a lot of healthy, natural, organic foods plus other things we always need. So when we go (bi weekly) it is a long trip and man it wears me out!!!

Cooper was not in the best of moods today he got upset this morning when I put his shoes on wrong (to him) and there has just been no recovering from that. With the shoes it was typical Cooper I put them on him and he started making noises (instead of words) to tell me that I did it wrong. Finally I got him calmed down enough to tell me what was wrong and he said "they are wrong. They are wrong. They are wrong. Wrong feet. Wrong feet. Wrong feet..." I tried to convince him that Mommy did put them on the right feet but no he did not go for that. I just tried to distract him and he forgot about it eventually.

However, the thing is once he gets worked up about something the rest of the day is going to be tough. I think he is over tired lately (he is put in bed at 7 but does not fall asleep until 9 the earliest) and that is part of the meltdowns we are having lately.

Tomorrow is the movie at Regal with their Sensory Friendly Films so we are both really excited about that! Oh and I got a call from the county program and he has his county evaluation on May 13th and then an IEP (Individual Education Plan) meeting on May 29th. We are wanting to get him into the (FREE!!) county program for therapy and we want to see if the special needs preschool will be a better fit for him. We are happy with the school he is at but it is not a special needs school so it might not be the best place for Coop. AND we got a call to set up OT for Cooper! He will start on Monday! I am so excited about that!!

So... today even though it was a tiring trip and we have been having meltdowns and not enough sleep I am again reminded that "God is good all the time and all the time God is good!!"

Sometimes it pays off...

2009-04-01T13:20:00.000-07:00

Some days it pays off to have a child who does not seem interested in playing with other children. Today one of the kids in Cooper's class threw up IN class. Today I am grateful to know that Cooper was not playing with her or near her so hopefully he does not get the throw ups (and then the rest of us do not get the throw ups)!!!

All about Mommy

2009-03-29T12:23:00.000-07:00

One of the things with Cooper is that he is ALL about Mommy! Now what Mom does not want to be the favorite right?? Well, I do but I am a little too favored. I just get worn out. That sounds so horrible to say but sometimes I really wish Daddy could change that diaper, I wish Daddy could get him up from his nap, I wish Daddy could put him in bed.... If Cooper wants me and Daddy comes to get him he will scream "NO I WANT MOMMY!!!!" This is really tiresome to me and really hurtful to Kevin:( It just sucks all around.

Yesterday was not a great day either can you tell???

Today we missed church because all three boys were sick! We are always sick it seems! Jonathan (oldest) I think has strep and Cooper and Hunter have colds.

I am just blah today blah blah blah!

Some days are better than others....

2009-03-27T19:05:00.000-07:00

and some (like today) are worse.... I am not sure if it was the rain we had today or what but man!! Cooper was in a mood!!! He could not be made happy by nearly anything and we all knew it! We went to the grocery store and it was more busy and noisy than normal and he pitched a fit through about half of the store. Also, to the lady at the deli I know you were trying to be nice but you were NOT helping when you were asking him what was wrong and telling him to stop. NOT helpful at all! I really need to learn a kind way to say "thank you, I know you are trying to help but stop!"

Cooper would not eat his lunch, then he would not eat his snack, then he would not eat dinner, hum.. surprising to us all he was starving when it was time for bed! Oh shocking! He was picking on Emma and Hunter today he picked on Jonathan when he got home from school, he was picking on me (hitting) it was just a hot mess today.

We had been invited to go to a jumpy place with some other moms and kids from church I am REALLY glad that I said I could not go. I can only imagine what that would have been like!

Agghhh!!!

The good thing about bad days though is that they end and *hopefully* the next one is better:)

Testing!

2009-03-26T12:54:00.000-07:00

Cooper had his testing yesterday and he did so great! I was so proud of him!! First they did an IQ test and I was really surprised by how much he knew. Now, I am not saying I did not think he was smart but there were just a lot of random things they asked him that I did not think he would know. For example they showed him pictures of 4 houses and he had to say which one was "fancy" well he did it! They also read a story that was a paragraph long and then asked him a bunch of questions. He was able to remember a lot of the story and in fact last night he was still able to remember much of it to tell Kev all about it. The office takes about 2-3 weeks to get the report together so I am anxiously awaiting that!

Yesterday was a fun day after that! Daddy was home all day (to watch the other kids) so all the kids got to play with Daddy. Also, we have a rotation for the kids and let one of them stay up a little later than the others. Last night it was Cooper's turn:) There was a show on Discovery that was all about Ocean life so we all watched that together. Coop loves all things Ocean so he really enjoyed that!

The weekend and the dentist

2009-03-23T17:11:00.000-07:00

This weekend was so fun! Weekends at home with Daddy are the best though:) Nothing too exciting happened for the most part. We did go to a wedding on Saturday night thought. That went well because they offered free babysitting there! How awesome is that?!?!? Cooper got to play with the other three kids plus about 10 or so other children. He made a craft (a butterfly) that he was very proud of and he got a treat bag that he was thrilled with!

Sunday we went to church and they had a baby dedication for all the babies born within the last year. They showed a video before the dedication that was kind of loud so Cooper put his head on Kevin's lap and Kevin covered his ears with his hands. Once the video was over he just sat right back up and was fine until the singing started then, like always, he wanted one of us to hold him. We found some noise blocking headphones online that we are going to get for him. They are a fun blue color so we *think* he might wear them and it will REALLY help him. We plan to use them for things like movies and bowling and our Disney trip but it will also be for church.

Today we went to the dentist and Cooper has always done really well there and today was no exception. He did great! We go to a really wonderful pediatric dentist that is about 10 minutes up the road and she is really great with the kids. Cooper really likes her and he likes getting to wear some shades and lay back and watch a movie while she checks his teeth. He has not gotten X-Rays of his teeth yet so we will cross that bridge when we come to it!

We have school tomorrow and then the testing on Wednesday eek!!!

He pooped!!!

2009-03-20T11:58:00.000-07:00

Part of SPD is that kids don't feel the urge to use the potty. They just go without realizing that they needed to go, they just can't tell the sensation. We have tried to potty train Cooper boy oh boy have we tried!!! We started doing what we did with the oldest two kids and it just did not work!

Well, I talked with a friend who has a son with SPD and she was more than helpful giving me ideas and encouragement. Kevin and I talked and we came up with a new game plan! Today I brought Cooper to Target (with only a few incidents!) to get some candy of his choosing (Swedish Fish), some new underpants and some $1 prizes. He gets 1 fish for peeing in the potty and one prize for pooping in the potty. Well, low and behold the kid had to pee at Target! 1 fish... we get home eat some lunch and I suggested he try to poop (I know his schedule!) and he DID IT!!!!! I was so proud of him! He was so excited because man he wanted that painting Curious George thing he picked!! YEAH!!!

I also picked up two boxes of Uncrustables;)

Oh and I just got off the phone with the doctors office and the testing is scheduled for this Wednesday!! She said they had to resubmit because the insurance company did not accept the diagnosis. She said "Dr C gave an honest diagnosis and they said if he changed it to something else they would cover it." I asked what that diagnosis was and she Autism. That does not really mean a whole lot though to us because he did not do any of the testing yet!

I HATE Insurance Companies!

2009-03-19T15:27:00.000-07:00

Man do they stink or what??? I found out that all the best OT places in my area don't take the HMO only the PPO (which we do not have) so now I have to go with a sub par place until January. NOT happy today!

I gave Coop a PB&J sandwich today that was a no go. I knew it was going to happen but I had to try! I gave him one made with homemade bread and natural PB&J... he said "this is not my peanut butter Mommy!" so now I know. I will pick up some more uncrustables tomorrow;) Not worth the fight I think! I can cross that bridge later!!!

I have spent the day looking for some noise cancelling headphones. Cooper does not like loud noises so we think they would be a good investment. He always wants us to hold him in church and it is not too bad but when I am wearing my 4" heals and he is nearly 40lbs it is a challenge! We are also going to Disney later this year and think they will be good for some of the rides.

An exciting find of the day though is that The Autism Society of America and AMC Entertainment have Sensory Friendly Films. They keep the lights on, turn the volume down and the no talking policy is waved! How awesome is that?? There is one movie a month and in a few weeks it will be Monsters VS Aliens at the movie theater we often go to! I am so excited for him!!

Peanut butter sandwich! HORRAY!

2009-03-18T12:04:00.000-07:00

We avoided peanuts for a long time with Cooper at the advice of his allergist so we have recently introduced them to him. Well he will not eat it! Again, it is something new so he is nervous about that. I have been packing him PB&J for lunch to try to get him to eat it. I cut the bread into fun shapes thinking that will help. Well, I packed an "Uncrustables" yesterday thinking maybe that would work. Now, anyone who knows me well knows that it is really unlike me. I buy natural peanut butter, I buy 100% fruit spread and 100% whole wheat bread, while I actually prefer to make my own. So... this was a big step for Mommy too!

Well, he would not eat the sandwich. His teachers love Coop and they are really sweet with him so Ms Michelle said that she would bring a PB&J sandwich today too so Cooper should bring one and they would eat one together. Well, we talked about it all night we talked about it all morning they talked about it in class.... lunch time came..... he was hesitant but he FINALLY ATE IT!! HORRAY!!!! He would take a tiny little mouse bite and Michelle would cheer for him and then all his little friends started cheering for him, it was sweet and really fun for him. He ate almost the whole thing too! I am so proud of him:)

Berry Mix and Red Socks

2009-03-17T15:33:00.000-07:00

So this blog is going to be an outlet for me and the challenges as well as the blessings life brings when raising a child with a special need. So here is the story:

Last week I went to Super Target with the three youngest kids and I saw they had all kinds of berries on sale that looked really good. Well, the kids all love berries Cooper especially he will always say "Mommy, strawberries are my favorite" so I thought I would get some and make a big mix of them. Well, bad idea Mommy. Cooper would NOT eat that mix! "No Mommy I don't like this!" He will eat any of the berries by themselves but to put them together is too outside his norm. So, I just gave him regular plain strawberries and we were all a lot happier!

Then this morning we were getting dressed for school. I grabbed a pair of socks out of his drawer and without thinking I grabbed the white socks with the red bottom *GASP!* the horror!!! Now, the reason this brings drama is that Cooper will only wear white socks. I know this but I have been trying to challenge him on that. I bought some Batman socks, Batman gets a lot of love in this house so I thought this was a good idea.... nope Coop won't wear them. So this morning as he was wretching, crying and pulling his feet under him so I could not put the blasted white and red socks on him I just thought you know not worth it, okay Cooper let's get out some white socks.

So what does he do??

2009-03-17T15:11:00.001-07:00

I am sure you want to know so how is Cooper atypical (that is the nice term weird is not). Cooper has always had issues with food textures he will gag on anything that he deems unacceptable also he does not want to try new foods. I made pancakes one night for dinner without and egg or milk and I loaded those babies up with syrup to get him to just *try* them. Nope no go. I put syrup on the fork he lapped that up (the fact that I called it candy might have helped....) but when he saw me put it on the pancake nope. This is more than a typical child. Cooper will allow himself to go hungry to avoid trying a new food.

Once I decided to be fun Mom and bring the kids to McDonald's for lunch one day. Daddy was at work but we can do something fun right?? So I get a hamburger meal for Cooper well he would NOT eat it! For THREE DAYS I gave that kid nothing but that stinkin' hamburger and fries and never once did he even take a bite. That is more than a typical kid. One of the other kids would have broken by meal two!

Cooper is very stubborn, we have come to realize though that his stubbornness comes from a break in routine. If he has not done it before you can be assured that it is NOT going to go smoothly. He does not like loud noises at all. He will cover his eyes and then his ears to block out the visual stimuli and then the auditory stimuli.

Cooper will still tantrum like huge mega big time tantrum. I have brought him around the grocery store or Target just pitching a holy fit but oh well! Honestly, that does not embarrass me in the slightest. If it did I would never be able to leave my house! I never know what is going to set him off or why. I am hoping that this SPD diagnosis will give me some insight into that for his sake! I know that it cannot be very fun for him either!

When we are out he always has to hold onto the stroller for the baby or the shopping cart. If I make him let go for any reason like to walk through a door or to let someone pass he totally flips out. Also, if I push the cart in Target up the row and I realize "oh no, I just walked by the toothpaste" so I stop the cart and say "oh sorry guys! Mommy forgot the toothpaste I will get it and be right back. I am going right there (about 10' up the same row)." Cooper will totally freak out and scream "MOMMY DON'T LEAVE ME!!!" that gets me some good looks!

So that is the jist of it. There is more I am sure but we are so used to it it seems normal to us;)

So he got a diagnosis

2009-03-17T14:55:00.000-07:00

Okay, so Cooper just got a diagnosis of Sensory Processing Disorder. We are still waiting on insurance approval to do farther testing to see if he is on the Autism spectrum somewhere. That could either be classic Autism or Asperger's or PDD-NOS. So we will see and I will report back on that one....

Okay, so how it all started... Cooper has always just been quirky things that were unique to him. I always say he got every bad gene I had to offer! He has food allergies (severe life threatening to dairy and egg) as well as being incredibly stubborn (so like his mama!) and averse to new things (again I point at myself) to name a few highlights. We just always thought that was Cooper nothing to it just his personality. Well, I started e-mailing with a friends sister, this sister is a pediatric occupational therapist. She told me that it sounded like SPD to her so we went to the pediatrician to get a referral to the OT and speech for evaluations.

We went to the OT first and she said that she did recommend therapy for him and she would mail me a report in a few weeks. We went to the hearing test that is required for a speech eval (don't even get me started on how stupid it is to put a child who is immensely bothered by noises in a room to make him listen to noises and actually respond!) then to speech. Cooper's main speech problem is when he gets frustrated/tired/hungry he starts to make noises instead of using his words. So "eeeggghhhh" instead of "stop that! I don't like that!" However, ST does not recreate this they play and chat so they did not recommend speech for him.

So, I got the report in the mail from the OT and she diagnosed Cooper with Sensory Processing Disorder. I thought I was okay with it and I really am okay with it but to get the report in the mail that lists all the things that your child does that are atypical can be a little tough on a mama. So, I read it and then went out to the bookstore like I had planned. For the rest of the day though I felt like I had just been hit by a truck!

So, on March 12th I went to the developmental neuropsychologist. This psychologist talked to me for about an hour about Cooper and what is going on with him. He reviewed the reports from the ST and OT and came up with a list of tests that he wants to do. It is more physical testing (Cooper has gross and fine motor skill delays) as well as the Autism Spectrum testing. After this appointment again I felt like I had just been hit by a truck! I am a pretty tough cookie, I don't need a lot of coddling or hand holding. However when I have gone from thinking my son is a typical 3 year old to finding out that he has a lifelong challenge, albeit one that he can significantly improve, in less than a month. Is a little hand holding too much to ask for??? I think not!

So that is where we are. We wait for the insurance to approve all or part of the testing and then we will test. Cooper is also on the waiting list for OT but there is another place I am going to try to get him into that I think will be better for him.