Normal behavior?

Nicole - posted on 01/28/2010 ( 24 moms have responded )

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Let me start by saying both of my boys were recently diagnosed with celiac disease (an autoimmune disorder). In hindsight, the symptoms are obvious but at the time, I only thought of it sometimes, as something to bring up to their pediatrician the next time we saw him. Now I feel my "mommy radar" is off and am questioning everything. I plan on talking with their ped soon but if anyone has some calming words or advice in the meantime, that'd be great.



First, my oldest is 4 (5 in March). He's a great kid, loves to play with others. He loves to jump, listen to stories, run around like a dinosasur. He was in a preschool in the fall but we pulled him out at Christmas. No issue, just decided to homeschool. But he is a different kid in crowds. He likes to have one or two friends around to play but more than that can lead to meltdowns (usually after the fact). The questions I have with him? Meltdowns. I know his triggers but many are coming out of nowhere. They were worse (more frequent) when in preschool. An example. We were at a local bookstore playing with a train set. A few other kids/moms were there also. He points to a puzzle on the wall and says, "Mom, look." So I said puzzle. He says no. I say other toys that were by the puzzle, try to get him to say it, try to get him to go to it, etc. He's escalating and finally he sobs out "library puzzle." Meaning it was the same as at the library. On a similar note, he'll ask questions and if I don't give the right, exact answer he gets upset. For instance, he'll ask if he needs to wear socks to bed. The answer he wants to hear is, "No, you don't NEED to wear socks." I can't even say, "If you want." This question/answer thing is getting quite old!



My youngest son will be three on Saturday. He's just now started to talk using more than one word though oftentimes he's difficult to understand unless you're very aware of what's going on. He has made big leaps in language in the last few months but that may be his diet change (due to the celiac diagnosis). Another thing I stumbled on the last week was that I don't think he knows his name. Well, he responds to his name but he won't answer his name if you ask what his name is (but he knows all the family's names). We had been reading a book that featured a girl with a friend that shared his name. He keeps saying the boy is him and then he points to the girl and says, "Austin." That's my oldest son's name. He's started to be a very cuddly boy (he wasn't so much in the first few years). He's VERY independent. My husband and I joke about his OCD tendencies - which are easing up thankfully (and his pediatrician said not to worry about it until 4ish). He loves imitating his big brother, helping me, doing puzzles, going outside and he is always moving!



If you're still with me, thanks for reading! Just need to get my mommy radar back!

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Renee - posted on 01/30/2010

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It can take weeks to recover from one gluten misahp. It's crazy. Be sure that your husband washes his hands after handling gluten so as to not be putting it on basic surfaces. Also, wood absorbs gluten. You might want to replace any wooden spoons or cutting boards you have and start fresh to be sure that they are gluten free.

Renee - posted on 01/30/2010

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Nicole,
I want to start by saying that my 4 yr old daughter and I both have Celiac Disease. Aside from obvious physical reactions to eating gluten, we have emotional and mental responses as well. Mainly they happen when we eat something that has been accidently contaminated. My daughter and I both get very moody. My mom can tell when I have had gluten because I develope a very short fuse (I normally am patient with things). My daughter gets very grumpy as well. She cries over everything. She will also become confused. She forgets basic things. For example- she will tell me that she needs to go the bathroom but not know what to do next; she will stand there and go on the floor. That is not just a little kid having an accident. She has been fully potty trained since she was 2, but suddenly is having difficulties with basic things. We worried a lot about autism because she would stand there whining and pointing but would refuse to use words.
I have found that we must be more careful than the doctor stressed. Prevent cross contamination at all costs. Don't allow Play-doh in the house (it has gluten and gets under their finger nails). Don't allow them to lick enveopes (they have gluten). There are so many hidden sources to be careful of. Before you worry too much, talk to the doctor to see if they could do the blood screening again. If you have succeeded in eliminating all gluten from their diets, their tests will come back negative because the antibodies will not be there. If they come back pos, then they are still getting gluten in their systems.
As for her refusal to say what is on her mind- I do not play along. I tell her that she must use her words or I will not know what she wants. She gets mad but gives in.
I hope that some of this may help you. Good- luck!
Renee

Iridescent - posted on 01/30/2010

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Autism is a whole group of tendencies. One of my children was moderately/severely autistic. Now our youngest son is also likely autistic we are learning. You did mention some very common tendencies that go with autism, but stating he is based on the little written here is really assuming a lot, as there is much more that goes with it than a few symptoms. Here's a link that describes it better:
http://www.autism-pdd.net/checklist.html

There are a lot of other things that could be causing the problems you describe, which is why an evaluation would be a good idea.

Iridescent - posted on 01/28/2010

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Those are very familiar frustrations. I'd highly recommend getting a school evaluation done for social behaviors and tolerance, anxiety, sensory problems, and language. They have to do it if you request. It sounds like your older child is needing more structure in his life than is normal, and it can get worse yet if it's not dealt with somehow. And the second child not knowing his name yet, I understand what you mean, and that is a 2-3 year old skill he should really have. If he doesn't know that one, there are likely many others he needs some help with.

Also, even though you are homeschooling and social situations are causing your children anxiety, it would be a very good idea to set up playgroups or go out where they are exposed to other children at least 2x a week to keep it from getting worse. Otherwise they will not learn how to deal with it.

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Shannon - posted on 02/03/2010

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Don't worry yourself too much about all of it. I have no answers for you, but will say having a son with medical issues myself you start to freak out about everything and look into everything they do waay too much. Slow down and have a long talk with your pediatrician. They will know the best what to do. Your mommy radar isn't off, it is in hyperdrive! Good luck and best wishes. It sounds like you have two happy little boys there. Youa er doing a great job!

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Nicole, You are a dear young mom, and the "diagnosis" part is one of the most difficult parts of dealing with "diseases", etc. I do want you to take heart, because this particular
diagnosis, celiac disease, is very easily managed with dietary nutrition and homeopathic supplements. You might want to take a look at a web site that will give you all kinds of encouragement. The Center of Natural Medicine in Nashville, TN treats and helps people from all over the world. The founder of it is named Dr. Asa Andrew, and he is a fountain of knowledge, they have extensive blood analysis, far beyond what any general doctors perform, and they are the most kind, understanding, loving people you will meet on the face of the earth. You can find the organization online at: drasa.com

Check him out!

Also. I will leave you with this wonderful promise from the Bible. It is for you to hold on to for you, your husband and your children:
Jeremiah 29:11 - 13-

11 "For I know the plans that I have for you,' declares the LORD, 'plans for welfare and not for calamity to give you a future and a hope.
12 Then you will call upon Me and come and pray to Me, and I will listen to you.
13 You will seek Me and find Me when you search for Me with all your heart."
From: The New American Standard Bible

I will pray for you and your family. Blessings to you all, Marialyce

Nicole - posted on 01/31/2010

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Thank you Marialyce and Cindy for the kind words. I've always tried to pay attention and to be in tune with my children (not as easy when I keep adding to the numbers!). And I know each child is unique. So I try not to compare them, continually try to accept them as is, no matter what the future holds and try to help them grow into responsible, loving people. I just feel a bit rocky at the moment - life's not perfect, right? Some of it stems from their recent diagnosis, some of it from breaking away from the norm (to homeschool, to live life slower). I like the vacation analogy. It's funny because with kids, disability or no, I doubt very few of us make it to Italy (even if it feels like you're the only one in Holland)!!! :)

[deleted account]

Excellent lense to look through. Celebrate the glorious wonder of life, in whatever form it takes.

Cindy - posted on 01/31/2010

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HI Nicole,

I thought you and other Moms might want to read this. It was given to me when my son was little and I was frustrated with him, but Mommy 's love always overrides everything.



" Welcome to Holland"



I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel . Its like this......



When you're going to have a baby, its like planning a fabulous vacation trip- to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, The Michaelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. Its all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go.Several hours later, the plane lands. The stewardess comes in and says "Welcome to Holland".

"Holland?!?! you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I dreamed of going to Italy".

But there's been a change in flight plans. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, filthy, disgusting place.

So you must go out and buy new guidebooks.And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. Its slower paced than Italy,less flashy than Italy. But after you have been there awhile and you catch your breath, you look around .... and you begin to notice that Holland has windmills, ...and Holland has tulips. Holland even has Rembrandt's.

But every one you know is busy coming and going from Italy.... and they're all bragging about what a wonderful time they had there.

And for the rest of your life, you will say... Yes, that's where I was supposed to go. That's what I had planned".

And the pain of that will never evet go away... because the loss of that dream is a very significant loss. BUT...... if you spend your time and life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about HOLLAND! From Cindy

[deleted account]

Hi. Nicole,

I read every word of your post, and I think I may be able to offer some wisdom. I am an Exceptional Educator with 40+ years of experience in the field. We live in a society where people "worry" about their children so much—and with great validity I will say since the world is literally going crazy.





Having said that, as a parent it is very helpful to keep a positive attitude, an attitude with hope, faith, and the expectation that your children are going to thrive in the loving, peace-filled and accepting arms of their father and mother. Creating a peaceful home where your children can be who they are is your main focus, I'm sure. You sound like a wonderful, caring mother.



The medical model has so unwittingly yet pervasively formed the expectation at "surely there must be something wrong", that parents are often looking for trouble "before" it starts.



Even if I remotely thought one of my children demonstrated OCD, I would not dwell on it, nor would I joke about it with my spouse, even mention or discuss it in or around the presence of the children—what that says to me (and to them) is that you may be beginning to "accept" it. It may well be true and a professional may be needed, but at the age of less than three it could simply be a child exhibiting frustration and/or just wanting his own way.



With regard to OCD and meltdowns, however, there is much that can be done to thwart its growth, the most effective way is having a well-structured daily scheduled routine for you children and your day. Kids need to "know" what is going to happen. They thrive in a purposeful environment, but fall apart in chaos. We as parents have the potential to create positive, uplifting, faith-filled attitudes in our talk about our children—our selves, relationships or work, etc. I am not saying this is easy, but I am saying it is do-able! :))



In the presence of meltdowns, you must remember you are the parent, and they are the kids. You are the parent and you "control" the environment—which does not come easy at times. As you understand "you" (and your husband) are in charge and the kids follow your rules and regs., not the other way around, that will go far in dealing with meltdowns and things that fall into the domain of chaos. Discipline (good, firm, appropriate consequences that are upheld and followed through for inappropriate behavior) must be mandated by you. If you have difficulties with that area, you can enlist the help of a behaviorist , exceptional educator with adaptive behavioral background or a social worker. (I highly recommend watching the TV program, "Super Nanny".)



Children are are truly the "center" of their own little worlds, and they are selfish by nature (you must know by now that you do not spend one bit of time trying to teach them how to be selfish, melting down when they don't get what they want, etc). We spend all of our time trying to teach our children to be good, strong, independent people. The more you enjoy your children for who they are, the more you will see all the wonderful, positive, great and creative genius in each of your children. This does not mean that parents put their heads in the sand when they see something that doesn't seem just right. It is equally your responsibility as a parent to follow through to get your kids the help they need, if they indeed to need it.



If you are open to reading the Bible, Proverbs has so much wisdom on

raising children, managing a home, family, husband, etc. If you are not

open to that, there are so many self-help books and tons of sites on line to

help you with your children's up-bringing. There are books with encouraging thoughts for the day, devotionals for moms of little ones, etc., the list is endless. One of the greatest encouragements I can give you from a spiritual perspective is this: God gave you these precious little ones, He knew you before you were even created in the womb of your own dear mother, and He knew you would be the mom of these boys. So. He has equipped you to be their one and only best mom for them! And that goes for their dad too. (Psalms 139)



Pretty classically, it takes boys a bit longer to master communication/speech milestones. They need a daily environment, richly saturated with dialog coming to and from all of you. The greatest thing you can do to help with this is to talk to your children just like you talk to any adult—not talking down to children is of highest importance (so many people do that). Your youngest who has the "meltdowns" may be demonstrating frustration, and he may not be quite ready for much group interaction, so you are right on to pull back a bit. I believe you have good discernment for your children's needs. You are doing great.



With the meltdown scenario, you and your husband must take a look within the home environment to see if that has in any way been modeled to your children—TV, parents losing it, video games and the like should be eliminated if that is happening).



Children are little people and they talk better, process communication better, when they are spoken to and treated just like you would talk to your husband and other adults. Explaining things to a three-year-old on his level takes painting visual pictures he can understand - but not talking down to them. The quality and quantity of good communication, looking at pictures and labeling literally" everything in their environment (verbally and at times with a written word or two) will bring them farther in a much shorter time frame.



If you want to dialog, let me know.



In the meantime, I will pray for you and your family. Prayer, trusting God, and enjoying your children (and loving/enjoying your husband in front of your boys) are the most important contributions to create a healthy, loving, fulfilling family life.



Blessings,

Marialyce in Nashville

Helen - posted on 01/30/2010

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not really sure what to say but a golden rule is that melt downs are best ignored

Iridescent - posted on 01/30/2010

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Gluten is also in most medications, so make sure you check with the pharmacist when you get any prescriptions filled. And one mishap can take up to 6 weeks to heal.

Renee - posted on 01/30/2010

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It sounds like you are doing a great job staying on top of things! Kudos to you! That would make having things come into question even more frustrating. I wish you luck.

Nicole - posted on 01/30/2010

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Yeah, thanks Renee. We started with a clean slate in the kitchen. I kept a few of the old stuff for my husband just in case and whatever he uses goes into the dishwasher. He has a whole section in the kitchen to himself. I have told him (and reminded him) to wash his hands after. I hope he does. I'm usually asleep when he eats his stuff. But this is my young one. Both boys get bloodwork done in March to check everything.

Nicole - posted on 01/30/2010

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Thanks Renee, I'm definitely keeping this in mind. He's been GF for three months now. My 2 year old was retested and I guess his TTG levels are still high. I didn't talk to the person directly, am awaiting a call. Gluten's coming from somewhere. I have GF play-doh and our house is mostly GF. My husband is the only one who brings in outside gluten-containing food, and usually eats it past bed-time. He did have two gluten accidents that we know about. The most recent was just over two weeks ago - a full bite of a PB&J sandwich. But I wonder if a bite has that much power to swing it up? Anyway, we're looking closer at EVERYTHING now - bath products, toothpaste, even all the supposed GF foods we have now.



But it is a thought much appreciated. Hopefully, it's all tied in with the celiac. But only time will tell with that.

Rhonda - posted on 01/30/2010

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Hi Nicole,
I must admit that Aspergers popped into my mind when I read your post.
I think it would be worth investigating as Cindy says there is a lage range and group of tendencies.
I have looked after children with Aspergers and they ranged from mild to extreme.
The whole having to say the right thing really rings bells for me.
Your radar is in excellent condition.

Nicole - posted on 01/30/2010

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Thanks Amy for that link. Other sites I had gone to really pushed the red flags and very obvious signs - mostly in kids under 2. But this site explained a bit more. I like real-life examples because it seems to vary child to child. How in the world do they tell with a child who's so not obviously autistic? (That was just rhetorical by the way!)



Thanks Cindy for the words of encouragement. It is difficult to stand back and look at our children objectively. The hardest part for me is that it's hard to know what's normal and what's not. A lot of stuff he does I just consider that "to be Austin." It's when we get around other kids that I wonder sometimes. BUT, with that said, I just don't see him and autism making a fit. Some of things kind of fit but overall, no. As I said, he works well in small groups. For instance, at Christmas, a young boy came over to my parents' and Austin just took him right in, letting him join in the play. But he does like to play his way but I always figured this was pretty normal in the kid world. In large groups, he just hangs around on the outside, observing. When he was in preschool, I'd watch him during the last few minutes. Most of the kids would be doing the circle time and participating (or trying to). Austin just sat there looking bored, not even trying. Anyway, we'll see what his doctor says.



And Cindy, I would have thought cancer too! What a rough road. We had our scare this time last year with Austin after finding a nodule in his lung. So scary!

Cindy - posted on 01/30/2010

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trust me there is nothing wrong with your mommy radar! First it is so hard to come to terms there might be something wrong with our child. It hurts and it hurts alot. Don't deny that hurt it does not go away you just move past it and it is easier said than done.My daughter is 14 and when she was 11 she went ice skating with her Girl Scout troop. She came home in tears and in so much pain in her feet and ankles but i put ice on them and gave her Motrin. She recovered but then these fevers would come from nowhere and she would be sent home from school. I did the same thing ,i shrugged it off deep down knowing something was not okay but too scared to find out. That went on for six months until we went to the beach with my sister and I saw my daughter ,She was so thin and had bumps on her joints,and before long a fever again. Now i panicked becuase I felt like i let her down and I blamed myself so I know how you feel. But i called the doctor right away ,i swear I thought she had cancer and i was petrified,and her father thought i was nuts. He stll cant admit it and we are divorced. So please let your husband read this too. You will each handle things differently but stand together if you can,it will help your sons. Well as it turned out she also has an auto immune disorder --Juvenile Rheumatoid Arthritis. Its so hard to watch her suffer but feeling guilty or sad about it just keeps us held back and not able to do things that we need to do. Okay I also have a son who is now 25. When he was a baby he would only sleep 20 minutes at a time. He would cry for hours be fussy but after a few months it settled down a little. But i knew something was not right. I kept telling the pediatrician but his answer was hes a boy you are just used to girls boys are more active . Yeah rifght. My son turned 1 but if he got hurt the whole neighborhood knew it from his screeching and he could not be comforted no matter what i did. I kept pushing the dr and he finally got it . but not until my son went to nursery school. But he was not learning the way other kids his age were . His drawings were not legible.He did not read anything, did not want too.He didn't care if he was there or not. He did not make friends easily . Even though i knew something was wrong I still kept hoping it was just immaturity. So I went to the principal of my daughters school and he ended up going to kindergarten where they started testing. My story goes on if you would like to hear it my e-mail address is angel2mj175@gmail.com. Your radar is not off ,i wish I could give you a mommy hug from here ,I know where you are its not your FAULT! Eventually I became involved in my school district Special Education PTA I was a secretary and the President. I have done extensive research and I was also a Special Education Teaching Assistant. I am not saying that your sons need it it just helped me understand my son and had other people reach out to me and support me .I finally did not feel so alone ,there are so many kids and the sooner they can get any help the better it is. My name is Cindy,I havea very beautiful story too ,that was given to me when My son started school. It made me really put things in perspective. I can e-mail that to you too,if you would like it. You have made a huge step in reaching out. Remember your radar is right on target.STICK TO IT! TRUST YOURSELF No one knows your kids better than you.

Nicole - posted on 01/29/2010

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Brittany, why would you suggest this? Not being defensive, genuinely curious. I had always thought of autism in the most severe form but after seeing a few kids with Aspergers, I have a really hard time understanding it. Maybe they're young enough that I don't see anything "wrong" in the situations I was in. Of course I'm sure it's different when you're with someone 24/7. But wouldn't the fact that he likes to play with others and does generally well rule autism out?

[deleted account]

I'm going just based off what you have posted. It sounds like your oldest could possibly be autistic. As in Aspergers Autism. I would def. bring it up with my pediatrician the next time I saw him/her.

Iridescent - posted on 01/29/2010

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That's great! Even those things are enough to help learn how to deal with other kids their age and appropriate behavior in a social situation. It doesn't have to be in a school setting, and if you feel it's just too much for him right now, it likely is. The next step is finding out what he can tolerate, and continue to push those limits and teach him how to cope. The coping is the hard part, but the most needed. I'm sure you can do it, but we all do need to be taught ourselves first.

Nicole - posted on 01/29/2010

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Thanks to both of you. I'll be seeing their pediatrician in about a week and a half for my youngest son's check-up. Can't believe he'll be three tomorrow! I just feel off. Hopefully that goes away sooner rather than later! I just hate feeling like the paranoid mom but my kids' pediatrician knows me well enough I think to realize I'm not looking for problems if you know what I mean! And he definitely believes in the mommy instinct.



Also, Amy, my oldest is definitely a structured kid. I wish that meant organized. But he likes to know what's going to happen today, tomorrow, a week from now. He's been like that from the get-go. That is one positive for him as far as public school. However, I don't think he's mature enough based on what I saw from him being in preschool. I think he'd become quite withdrawn and worn down. With that said, we don't hibernate either. Well, post holidays we did because we were sick for a month! But we're starting to get out more. Have a once a week play group plus we go out somewhere once a week that's not errand related (a local farm does a story time, library, etc.). It's all kind of funny. My oldest will do great in a social situation (he may be shy and just observe but he might jump in - depends on the situation) but afterwards, watch out. Meltdown city!

Gwen - posted on 01/28/2010

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I can sympathize with your worry and frustration, but have absolutely no advice for you. Maybe you could run your questions by a child psychiatrist or counselor just to see if they have encountered anything similar?

Sorry I can't be more helpful :-/

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