Your thoughts, please (long)

[blessed3x]

Hello-

 

This is my first visit to the SN board, though I have been on WTM for quite a while. I am asking for your opinions about ds8.5.

 

This is lengthy, so thanks for sticking with me. :)

 

DS8 will be 9 in May. He has little quirks, and I am beginning to wonder if they were all put together would it mean something. I don't like labels, but see these as a tool for knowing how to work with and help your child.

 

Here they are, but feel free to ask questions:

 

• Sleep:
  Since infancy he would not, could not, sleep alone. As an infant he had to feel contact whether it was being held or touching me. We finally just co-slept so we could all sleep and he would reach out and touch my arm. Since then he has woken many times through the night to crawl into our bed. He can go to sleep in his room, but rarely sleeps through the night.
  
  
• Eating
  : He has a very limited diet. I made a list for a feeding therapist and it was around one dozen items that he can and will eat. As an infant he nursed. When it was time to transition to baby food he spit almost everything out or gagged. He has a bland diet and texture issues with food. If he tries to eat something he usually gags, and most recently vomited.
  
  
• Smell:
  Highly sensitive and often will not try food based on it's smell. Also does not like to walk down certain isles in the grocery store because of the smell (pet food isle).
  
  
• Speech
  : He talked very late, but we used baby sign with him to communicate and it was fine. It was difficult to understand him when we did talk, so we were in speech therapy for 2 years. They had to show him a lot of tongue placement, especially for blends. A dear friend just told me that we should look into beginning again (we have stopped this last year). Maybe we are used to it and did not think twice?
  
  
• Eye Contact
  : He does not make eye contact except with me occasionally. If I ask him to he tries, but his eyes usually go to the left. With others though (ex: thanking adults) he does not. In play with friends he does look at them, but does not look them in the eyes.
  
  
• Hiding:
  When ds gets upset or scared he hides. It could be under a blanket in a balled position or under the table. It is usually
  under
  something.
  
  
• Soothing:
  He likes to sooth by rubbing my arm. It is always to same area and other things have not been able to replace it. We can be in a new place, and he has to rub it. When we tried feeding therapy, he had to rub it. If he is upset or feeling any strong emotion- he is rubbing it. I don't try to stop it because I know it is comforting, but I wonder how long this will go on?
  
  
• Rules:
  He is an avid rule follower, and believes everyone should be. Everything is very black and white. Even reading books, if there is someone breaking a rule he gets very upset.
  
  
• Social:
  He has friends, but it takes time for new ones. We have friends we see regularly and he interacts well with them. Put into a new situation though, and he will stay by my side. (don't most kids?)
  
  
• Routine:
  We have our routine and he likes to stick with it. I tell him if we have to go anywhere. We take trips occasionally and he is ok with it as long as he is with us. BUT, when ds19 was home for college and we played a game and she wanted the monopoly piece that he usually was he was so upset he would not play. :001_huh: Again, with another game we are usually certain colors and she chose one that he usually was, he was crushed. So, some changes devastate him.
  
  

 

With all of this said, he is a wonderful boy. He does well with school and loves math and science. He will not correct his pencil grip not matter what ;) and prefers not to do handwriting, but will. That is something else I have to add, ds wants to do as asked. He usually tries.

 

He plays soccer for spring and fall, then basketball in the winter. He is not aggressive in either sport but is very good at defensive positions. He usually dances around the fields and runs with a different gait. We have not run a lot other than the sports though, so I don't know if that is anything or not.

 

He plays piano and is good at it.

 

DH and I talked and he thought it was worth asking the hive and looking into, but also said this is 'just ds'. He thinks he was a lot like this as a boy and is probably nothing.

 

Maybe, but I thought I would run it past the hive. Do you think we need to look into or consider anything? Should we have him tested for anything in particular?

I appreciate your time!

[blessed3x]

Anyone have any thoughts on this?

: -)

[SailorMom]

:grouphug:

I certainly think there is enough there to get him evaluated.

He could be a late bloomer, or just an occasionally awkward kid, but it never hurts to have a professional give their oppinion.

That being said - do not take him to a PS for an eval. They will immediately label him - and do so very inaccurately.

The things that stand out to me are the eye contact issues, the eating, and the need for routine. I am NOT a professional, and I have never met your son, and I have no training.... so take this with a LARGE grain of salt - but I have a nephew with Aspergers, and had a child in my son's K class with Autism whom I aided as a volunteer, and your son in many ways does remind me of them both.

Again - I could meet your son in person and sya" Oh - never mind! This is nothing!" - it is really hard to say over the internet :)

[blessed3x]

Thanks, Kristy, and I agree with you. It is very hard to do without meeting him, but I appreciate your input. I am looking for those who are familiar with SN to give me an idea, and I sincerely appreciate it. :)

 

There are probably things I have left off, and things that I am so familiar with that I don't think twice about.

 

Thanks for your time.....

[dcurry]

Your husband probably *was* like this as a boy. Most of this stuff is heredity. With kids like that myself, we have chosen to not "label", but to rather work on what needs work, and accept the rest as personality. We had him seen by a neuro-developmentalist who worked with homeschoolers, and she called him a "sensory kid" and gave me stuff to do with him daily that improved his eating, smell sensitivities, and other areas that would make life difficult for him if he continued- but she refused to label him, which was good. He still struggles some in some areas, but is a delightful boy and we all love him. (He's 9 now, will be 10 in May).

 

Remember, even with a "label", there are individual differences with each child. All children are unique, so their differences should be enjoyed & treasured. We don't want them all "cookie-cutter" kids. However, if he's struggling with something (like eating or sleeping), you should look into ways to help him overcome those areas of difficulty. He won't always be living at home.

[blessed3x]

We had him seen by a neuro-developmentalist who worked with homeschoolers, and she called him a "sensory kid" and gave me stuff to do with him daily that improved his eating, smell sensitivities, and other areas that would make life difficult for him if he continued- but she refused to label him, which was good.

 

However, if he's struggling with something (like eating or sleeping), you should look into ways to help him overcome those areas of difficulty. He won't always be living at home.

 

How did you find the neuro-developmentalist? What made you decide to take him there?

 

I agree with everything you have said, and my concerns are the exact things you have stated. I don't want a 'cookie-cutter' kid. He is our 3rd child, some things we thought he would outgrow, others we have been working on. At some point though, we realize we may need help and possibly from a professional.

[Dobela]

As you are working on the food issues... My dd did many of those things and we thought it was a sensory issue in the beginning. A pediatrician finally ordered a swallow study after her weight gain was found to be lacking and it wasn't a food sensitivity issue - she was actually aspirating (food and liquids entering her lungs before coming back up and into the esophagus) and had since she was newborn. She was afraid of most any food because she couldn't control it. Recently a speech pathologist well versed with eating issues pointed out that my dd also had low oral motor muscle tone. ONce she began intensive work to increase tongue control and oral strength, the gagging stopped and she was able to swallow without aspiration. It has only been in the last 5 months that her diet has expanded beyond yogurt and bread (or similar foods). No one would believe me for a long time that I thought she was aspirating or had more than acid reflux - when she was finally diagnosed with aspiration issues it was called Silent Aspiration because she didn't have any of the characteristic signs.

 

Beyond the above... He sounds very much like our friend's son who has also been diagnosed with aspergers. They began with a private educational psychologist for recommendations. Their first big issue was that he needed accommodations on standardized testing required in our state. I should say that is why they began the journey - like you they had accommodated and worked with him so well at home that he was successful in many ways. After receiving diagnosis, they haven't changed much other than giving him more socially appropriate ways to deal with stress (like teaching him to walk around outside when feeling scared and closed in rather than hiding under a blanket or his coat). They have done some OT to help teach him ways to soothe himself and work on some mild motor issues. They are however keeping very detailed information and histories in case they need to ask for accommodations for the SAT or for college entrances, and so on. Or if for some reason he is not able to assimilate into adult society they can then help with other services that may be available. That was the main purpose of their looking for diagnosis - transition into adulthood and preparing for that. If he doesn't need help with transitions then, fine. If he does, then they will have many years of documentation ready.

[LizzyBee]

I would definitely get him evaluated by an OT for sensory processing disorder.

 

He could also have aspergers. Some of what you describe along those lines fits my dd14, who is very introverted and perhaps borderline aspergers, but not diagnosed. I'm not sure where that line is drawn and at what point it helps to have a diagnosis.

 

:grouphug:

[blessed3x]

I have a name from two friends who uses a Pediatric OT about 40 minutes from us. She is supposed to be very good.

Tomorrow I have an appointment with our dr for the referral.

 

Is there anything in particular I need to ask, know or do??

 

Anything you can offer will be helpful.

 

Thanks again, hive!

[PeterPan]

Sounds aspie to me too (not having an aspie). I'd get him evaluated by an OT who does sensory integration stuff, and I'd find an SLP who specializes in apraxia and feeding disorders. PROMPT is the bees' knees for apraxia, which often goes with autism/aspergers. Our SLP does apraxia and feeding disorders, that's it. We drive several hours to her. Contact http://www.promptinstitute.org to find someone.

 

My dd had the night time thing and is still like that. It's the sensory stuff. You definitely, definitely need an OT evaluation for sensory. There's a ton they can do to help you. Sometimes the start is just realizing what's there and why it's happening, kwim? Then you can start to learn new, more socially acceptable ways to meet her needs. Then you fill the bucket a bit and see if you can get it to chill. It's a process, not a single fix. And you're wise to start now, before he gets set in his ways or is of an age where he doesn't want OT.

 

BTW, it *can* happen that a dc looks like aspie or something else and is actually withdrawn because of the speech or other problems. Our SLP and OT both did screenings for autism/aspie, and they can help you sort it out. I've seen videos of dc who were apraxic and after 4 months of PROMPT speech therapy totally dropped the behaviors that could have indicated more (no eye contact, etc.). So just take it one step at a time.

[PeterPan]

I have a name from two friends who uses a Pediatric OT about 40 minutes from us. She is supposed to be very good.

Tomorrow I have an appointment with our dr for the referral.

 

Is there anything in particular I need to ask, know or do??

 

Anything you can offer will be helpful.

 

Thanks again, hive!

 

Does the pediatric OT do sensory integration? There's actually a certification in it. It's something to ask about.

 

Your ped could refer you to a developmental pediatrician who can oversee the entire thing and refer you to everyone you need. (Haven't been to one myself, just what I've read.)

[blessed3x]

Does the pediatric OT do sensory integration? There's actually a certification in it. It's something to ask about.

 

Thanks. I just called to verify. Yes, there are 4 OT's there who specialize in sensory integration.

[MomtoMERLD]

For my daughter, we had her evaluated by Mel Levine's organization in North Carolina. They were spot on with the diagnosis. They even went so far as to talk to her about herself and made her feel very good about her strengths and explained her weaknesses to her. They are expensive, but it was worth it to get an actual diagnosis. I only wish I lived near them so she can get the help she needs. We live in a big metropolis and I still can't seem to find any experts here!

 

So good luck to you. But check them out. I think it's under Success in Mind. Mel Levine is the one who wrote All Kinds of Minds, etc. in case you haven't heard of him. He is a developmental pediatrician. They do the same test that they describe in the book. It was worth it for us.

[Dobela]

I have a name from two friends who uses a Pediatric OT about 40 minutes from us. She is supposed to be very good.

Tomorrow I have an appointment with our dr for the referral.

 

Is there anything in particular I need to ask, know or do??

 

Anything you can offer will be helpful.

 

Thanks again, hive!

The list you made for us is a great start. For referrals to happen most drs will wants lots of reasons why for the referral. I know that for some forms of insurance doctors have to do checklists of sorts before the company will pay for the referrals. That is one reason why it took so long for my dd to have a swallow study - her ped couldn't check enough boxes to get the study paid for by insurance.

 

My son's pediatrician wanted to know what my goals were and why I was pursuing something so late (he ws over 6 and most people seem to start this younger). He also wanted a general timeline on when we began seeing certain characteristics and began having concerns. Now when I go for a visit I have my list and a duplicate copy for the dr. We just go down the list together.

 

Also, if it bothers your son for you to talk about this in front of him, let the doctor's office know before the appointment. My son's ped arranged for a nurse to stay with my son (doing general physical assessments and questions) while he and I talked in another exam room.

[deacongirl]

This sounds spectrum-y to me (not officially qualified for anything but I've had lots of training in ABA and have worked with kids on the spectrum) and I think it would be well worthwhile getting him evaluated.

[Misty]

I agree this sounds like mild ASD.. maybe too mild to get a diagnosis.. How late of a talker was he? If he had a signficant speech delay, then that would most likely rule out Asperger's and he would probably end up with PDD-NOS as a diagnosis if they find him to be on the spectrum.

[PrincessAriel]

As far as what to ask the doctor, I think your original post says a lot. Just take a copy of that or something similar along with you when you see the doctor and for the other appointments. You will probably be answering the same questions over and over with each appointment you have.

I wish you the best. Let us know what you find out if you are comfortable with that.

[Stacy in NJ]

have any qualifications, but I would say he sounds very Asperger-y to me.

 

I would first talk with your pediatrician and ask for a referal/recommendation for evaluation. I'm not sure that a diagnosis would do any good or any harm, but it would be a first step.

[Leonor]

I'm a bit pressed for time with my 2ds going into speech and debate tournaments so please forgive me if I repeat what has been said.

I don't have time to read all the posts in detail.

 

If he is a picky eater, he is probably not getting the vitamins that are percursors to neurotransmitters. He probably has a leaky gut and sensitivities. In which case, you will have sensory issues. If you have sensory issues, your son might behave in ways that can so easily be mislabeled. There are sensory integration programs you can do at home.

 

This is like peeling an onion. Symptoms merely get them labels. What is causing the symptoms?

What are those foods that he does eat?

 

I would recommend giving him probiotics and fish oil.

 

Have you read:

Superimmunity for Kids by Dr. Galland

Is this your child? by Doris Rapp

The Out of Sync Child

Smart Moves by Carla Hannaford

[blessed3x]

If he is a picky eater, he is probably not getting the vitamins that are percursors to neurotransmitters. He probably has a leaky gut and sensitivities. In which case, you will have sensory issues.

 

I will look into this. Thanks.

 

If you have sensory issues, your son might behave in ways that can so easily be mislabeled. There are sensory integration programs you can do at home.

 

I am getting a book about this. We will be starting with an OT in a week or two, but in the meantime I think having one to refer to and use at home is a good idea.

This is like peeling an onion. Symptoms merely get them labels. What is causing the symptoms?What are those foods that he does eat?

 

The only fruit is peeled apples, preferably 'Braeburn'. The only vegetables are baby carrots and seedless cucumbers. He will eat creamy peanut butter, preferably Jiff. Nutuarl Applesauce is acceptable. Some pudding, depending on the day. Yogurt if it is smooth; not fruit or chunky anything in it. He likes chicken nuggets, but won't eat chicken breast/thigh/or the like. He will eat some bread, but I try to limit it.

 

No other meats, no dairy/milk/eggs, no other vegs/fruit/ no mashed potatoes.

 

And this is AFTER going to feeding therapy for a time. I stopped when they were having me bring food in, forcing him to eat it and NOT getting to the true issues of symptoms. That is one thing I am hoping OT will help us with.

I would recommend giving him probiotics and fish oil.

 

He does take a probiotic daily. I have tried fish oil, but have not found one he can tolerate. He gags and spits them out. He does not swallow pills yet, so it has been difficult. If anyone knows of one for us to try, please do share!

Have you read:

Superimmunity for Kids by Dr. Galland

Is this your child? by Doris Rapp

The Out of Sync Child

Smart Moves by Carla Hannaford

 

 

Yes, I have read

The Out of Sync Child

,

but it was years ago. I just placed it back into my Amazon cart. Thanks for reminding me about it. :)

 

I have not heard of the other 3, but will look into them or see if our library has them. I appreciate you sharing all of this!

:001_smile:

[PrincessAriel]

Coromega squeeze is a good tasting fish oil. My dd likes the orange flavor. You could mix it with the yogurt. It tastes like orange sherbet.

[Mom22ns]

I agree this sounds like mild ASD.. maybe too mild to get a diagnosis.. How late of a talker was he? If he had a signficant speech delay, then that would most likely rule out Asperger's and he would probably end up with PDD-NOS as a diagnosis if they find him to be on the spectrum.

 

:iagree:

 

I wouldn't want to diagnose based on your post, but there is a lot there that would make me suspicious. I think the OT eval is a good place to start. I would go farther and get an eval for ASD. The label doesn't really matter. However, it can make you both feel better that it isn't your fault and he isn't "bad". It can also help you know how best to work with him.

 

My ds is PDD-NOS. He will always be a bit quirky and I would be crushed if he wasn't. It is part of who he is. At the same time we wanted to help him deal with the issues that would keep him from having a full and happy life. Not being able to handle a change such as the color of his game pieces is likely to mean he can't handle many social situations as he gets older and expectations rise. I want my ds to be within the normal range of flexible (whatever that means:lol:). He is now, but he wasn't at 3 or 5 or even 7. He did many of the things you talk about, co-sleeping, touching needing closeness, having trouble with some changes, food sensitivity and more. He doesn't have any of those issues anymore. He is a pretty typical teen who is really trying hard to gain independence.

 

I wish you well as you try to find the best path for your little guy.

[Misty]

If he is a picky eater, he is probably not getting the vitamins that are percursors to neurotransmitters. He probably has a leaky gut and sensitivities. In which case, you will have sensory issues. If you have sensory issues, your son might behave in ways that can so easily be mislabeled. There are sensory integration programs you can do at home.

 

This is like peeling an onion. Symptoms merely get them labels. What is causing the symptoms?

 

:iagree:

[ZeldaRules]

I would definitely get him evaluated by an OT for sensory processing disorder.

 

He could also have aspergers. Some of what you describe along those lines fits my dd14, who is very introverted and perhaps borderline aspergers, but not diagnosed. I'm not sure where that line is drawn and at what point it helps to have a diagnosis.

 

:grouphug:

 

Yeah, that. It sounds like he has sensory processing issues. An OT (Occupational Therapist) is the one to go to for therapy to help this. Your insurance may cover it, it may not. Everyone's insurance is different. We get 70 OT appt's a year and 0 speech. We get 20 speech if someone is in an accident that causes it.

 

My son will be 5 soon. He had colic as a baby. It was bad. He wouldn't take a bottle, so I was stuck to him for about 9 months. He ate solids later than my other two. He used to gag on his food twice a day until he was about 15-18 months old. He would gag on a cheerio. He didn't really start talking until he was 39 months old. He said about 8 words until then. He sees an OT twice a week and I love her. An OT will help your child learn to deal with their sensory issues.

 

My son differs in the social aspect of your son. My son is pretty social and gives good eye contact. He is always interacting with his siblings and he is very cuddly and loving. He loves to be touched. Deep pressure hugs help relieve his anxiety sometimes. He has the developmental delay diagnosis. Which means, they don't know what is wrong with him. We did go to a neurologist and he did chromosome and DNA testing. It cost $400 after insurance paid the 80%. They do that by a blood test. He came back fine. So if you go to a neurologist, they could do that just to rule some things out. I have seen kids who are missing a chromosome and you can tell they are off a little.

 

My husband wasn't like my son as a child. My son does have anxiety issues, and I think his anxiety issues are a cause of some of his issues.

 

An OT won't label or diagnose your child. You have to go to a doctor for that.

 

There is talk about neurodevelopmental programs on here. The few that I have found are called HANDLE, NACD and ICAN. ICAN is Little Giant Steps. I know they are here in Texas - I don't know if they are in other states. They have a curriculum they sell at our homeschool store for pre-school/K kids with issues for $157. They branched off from NACD after NACD changed their training requirements to require longer training than 2 weeks. One of the ladies that went through 2 week training program started Little Giant Steps (LGS) and certifies her people through ICAN rather than NACD because they don't qualify for NACD. I found this out by a lady who looked into working for LGS. She sent me the emails from NACD that allowed her to figure that out. However, they are set up pretty much the same. Does it matter that they don't have the same certification? I don't know. They have the basis of knowledge to help people with their problems. They aren't doctors of medicine, you can't claim their service on insurance and they aren't cheap. HANDLE is $2700-$3200 for 6 months of service. I know LGS' evaluation is $600 right off the bat. Some people swear by them, some people don't. So YMMV. :) I have no experience with them.

 

The difference between them and a neurologist is that they will give you things to do at home with your child to help them overcome their issues. They have a working plan. The neurologist will probably just tell you where to send your son so someone else can fix them. At least that is what happened with us. :) But a neurologist is covered by insurance and they can probably give you some insight that you may not think about regarding your son. So I would see a developmental pediatric neurologist as well.

 

Good luck!