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Family in stress: Does my 8 year old have AS? What's next?

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DW_a_mom
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06 Oct 2009, 10:08 pm

Welcome, GrandmaG! My AS son was always perfect for my mom. She was surprised when we got the AS diagnosis. But, over time, the whole family has come to see it. So many things could be a sign or not be a sign ... it is hard to say, which is why we like to send people who are concerned off to the professionals. The diagnosis has changed how we parent our son, but it hasn't changed who he is. He is an amazing kid just as, I am sure, your grandson is.


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Mom to an amazing AS boy (plus a non-AS daughter; both teenagers now). Most likely part of the "Broader Autism Phenotype" (some traits).


CRD
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06 Oct 2009, 10:39 pm

It sounds like they are lucky to have you GrandmaG :)



eeyore710
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09 Oct 2009, 11:37 am

Welcome grandmaG! And good for you that you are so involved! My daughter has always had a great relationship with her grandmother as well..grandma actually thinks we are all nuts (myself and my husband...and the psychologist, neurologist, teacher, special ed teacher, family doctor) and that there is nothing wrong with my daughter. The important thing as a grandparent is to remember that you have a very trusting relationship with your grandson and because of the great relationship you have, he is much less likely to feel stressed or under pressure when he is with you. This is a great thing! When my daughter goes more than about 3 days without grandma, she asks to go visit. For her, grandma is a trusted companion that she feels comfortable with, and honestly is her best friend. It also means that since she is so comfortable she doesn't demonstrate a lot of her problems around grandma.

Do try to keep in mind that the grandparent/grandchild relationship you have is a very unique and comforting situation for your grandson...and that an absence of problems with you doesn't mean he isn't having struggles in other areas. In our family, grandma not accepting my daughter's diagnosis has led to some interpersonal problems between mom and dad and grandma and has become a point of contention and stress because we are doing so much to help her function and grandma thinks we are coddling her and that she just needs more discipline in the settings where she is struggling. It sounds like you trust your son and daughter in law and that they are doing the right thing but it sounds like you are also having trouble seeing that there is a problem because it doesn't happen with you. I would encourage you to really try to be accepting of what the parents discover and any therapies/IEP at school/accomodations at home. And most of all, feel proud that you are such a great friend to your grandson...and continue to be the place he goes for comfort and companionship:)



sbwilson
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09 Oct 2009, 8:56 pm

black36 wrote:
Hey guys,

I am 41, my wife is 40, and we have 3 kids. Two boys 10 and 8, and my daughter is 5. I am writing about my 8 year old son.

Symptoms:
1 - Social problems: We just found out that he segregates himself from the other children on the playground during recess (he is in 3rd grade). He will "hang-out" with an aide, while engaging in adult like conversations with her. He will never join other children. He also cannot handle crowds of people. Any group frightens him, even family get togethers. Anxiety is at a high if he knows that we are going to some sort of social function as a family. He will demand continuously to the point of embarressment that we need to leave shortly after any arrival at any social event (birthday, graduation, wedding, general visit, barbeque, you get the picture). He also quit basketball last winter after several successful team practices. He had a melt down at his first game. This ended his basketball career, however, he has continued to play baseball (little league) for the fourth season in a row, but, when he made the all-star game, he had a tantrum during the 2nd inning, demanding that he needed to leave the field. Hopefully, he will play next spring. Also, even though he has some friends, he will often segregate himself even if the friend has been invited over to our house. He will usually demand that the friend needs to go home.

2 - General family tension: 90% of all issues in our home, includes my 8 year old son. On the rare occasion that he is not home (spending alone time with a grandparent for example), the house is suddenly calm and peaceful. He is also very physically expressive with anger. He will scratch or punch others without hesitation. (This includes all of us) This does not seem to go along with what I have researched on the web with "aspies", but I am just spilling my guts here with the hope to get some direction. Other common issues: when the family wants hotdogs, he wants hamburgers, get the picture?


I certainly get the picture, we have the exact same tension, and the exact same arguments with our son, I believe it comes from his need to control his environment, others might say it's oppositional defiance. I could see my son being oppositional, as he'd have easily learned how to be from me.

Quote:
3 - Coordination: An odd thing that he was diagnosed with a few years ago was his inability to hop on one foot during a routine doctor check-up. This seems strange because he is well coordinated with basic baseball skills, and his agility is normal. He also HATES to ride a bicycle. Enjoys playing chess and LOVES video games.


It sounds like it could be sensory issues to me.
Check out this age about the "7" senses. I've linked to Kinesthesia, because it sounds like what you're describing here.
http://academics.tjhsst.edu/psych/oldPsych/senses/kinesthesia/intro.html
This site is VERY informative...
http://www.sensory-processing-disorder.com/
Quote:
4 - Eating: Will frequently spit out food due to gaging. Also, he cannot watch people eat certain foods, nor watch someone brush their teeth. He will gag. He also cannot handle the dentist. We had to have him put out at a hospital in order to take care of a simple filling a year ago. His adult teeth came in with cavities.


We had our son in the hospital for 5 fillings in May ($$$) again, due to his sensory issues. Everything about a dental office is a nightmare for our son (who's 12 by the way). The sights, sounds, anxious kids in the waiting area (he can pshysically seem to 'feel' tension), phones ringing(sound), drills buzzing(sound), laying back in a chair when he has such a poor sense of where his body is in space(kinisthesia, equillibrium) , having 2 strangers right in his face when he already has a hard time with eye contact and being close with people to begin with, ....and then, last but not least, BAM!! ! A nice birght light, directly in the eyes (sight). Of course there are also weird flavours ranging from latex to cherry flouride, these count for funny smells too. It's complete overload! The last time we went to the ped dentist, Trent was doing so well keeping himself in check, until the gave him the nitrous oxide, he went into complete panic mode. So, we booked at the hospital.

Quote:
5 - Noises and images: Loud sounds and certain visiual images will absolutely freak him out. If the family goes to the movies, my wife and I will have to cover his eyes during any, even remotely scary scenes. (We're talking rated G.) Live music is a problem when loud. Even the PA system at a baseball or hockey game can set him off.


What about motorcycles, fire alarms, or the cheering crowds at the games? MY son has a very difficult time with this. Is your son nervous of fireworks?

Quote:
6 - Homework: Handwriting is absolutely terrible, but gets better if he takes his time. Backwords letters, reverse order words and completely illegible words are common. He HATES reading, however, he is incredible with math. Homework is a daily battle, several hours.


Our sons printing/handwriting, appear as if they were done by a very young child. Does your son crack his knuckles? Is he double jointed, or loose jointed? If he is, kids with joint hypermobility will often have a sore hand after writing very little. They'll likely press to hard on the paper when they write. ....might he be dyslexic?

Also, consider the sense of 'touch'..
http://academics.tjhsst.edu/psych/oldPsych/senses/touch/intro.html

Quote:
7 - Masked Symptoms: He is very tough to handle at home, but is suddenly ok everywhere else. People are shocked at our descriptions of what we go through until an outburst. Then they suddenly "see" what we are describing. This includes teachers. Weird.

8 - Profound Philosophical Statements: He has made countless, oddly profound, philosophical observations even as a 3-4 year old. He can also come up with very odd descriptions of certain things or concepts, while using language beyond his years. He is very smart. I think he is brilliant, and I am not saying this because he is my kid. We once tested him when he was very young because he showed symptoms of speech issues, but when he went through several various tests, he was off the charts higher than the average kid in terms of intelligence.


Our son too has come out with many bizarre and beyond his years things. He tests average for intelligence, with deficits in language and maths.

Quote:
9 - Depression: He has stated that he wishes that he was dead or that he did not exist. My wife and I are disturbed by such statements and we are not sure how to appropriately go forward here.

This has got to be really hard. We too can see the differences wearing down our son. And it's awful when he feels it even at homes sometimes. I try to remind myself that alot of his frustration comes from being misunderstood. We've always known he had some sensory issues, but we certainly didn't realize the depths to which that could make a kid feel different than everyone else. Especially if he feels like he's frustrating others, or letting them down. All he knows is that he works the way he works, and it is truly our responsibility as parents to tap into it. Trust me, I know that's easier said than done a LOT of times. It sounds to me like your son would benefit from occupational therapy to teach him how to deal with the things that stress him.

Quote:
10 - Loving: He is the most loving of my 3 kids and is exceptional with animals. We jokingly call him the "dog whisperer".


Of course he is, I bet he's a very sensitive little boy.

Quote:
Anyway, there's more but I just can't think of more at the moment. Please treat this post with the utmost seriousness. My wife is very close to embracing my son's constant daily demand to homeschool him. I am not convinced that this would be the best route in the long term. There will come a day that my son will have to deal with life, on his own. Please help!


So, as you can tell, I certainly believe he's got sensory issues that need to be addressed. I'm not sure what to recommend as it's all been trial and error (with a lot more error it seems) for us. I would assume it would be best to have him evaluated by a neurologist.
I'm in Canada, but I was told by a psychiatrist at a centre last week, that if our child's sensory issues had have been diagnosed early on, the school board would have owed him occupational therapy for his senses. He is still elligible to recieve it now, it just would have been niceif it started at 4, 5 or 6, rather than 12. Get him diagnosed, educate yourself inside out, and make sure the school gives him EVERYTHING he deserves! Consider homeschooling as a last ditch effort. It's good for him to be around kids, and when he gets a better handle on dealing with things, hopefully you'll see the improvements.... if not, maybe then consider homeschooling. Best wishes
SueKinesthesia



Last edited by sbwilson on 09 Oct 2009, 10:39 pm, edited 1 time in total.

sbwilson
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09 Oct 2009, 9:04 pm

DenvrDave wrote:
As far as peace in your home: 1) Establish rules for the home in very clear and certain terms that your son can understand, regarding things like manners, bedtime, etc. Start slowly, and build from there. My son is very literal, and doesn't pick up easily on sarcasm, inuendo, etc. and so we have to communicate serious topics on very literal terms (by the way, he is learning the art of social nuances, but it has taken time). Perhaps have your son write the rules down and hang them on his wall. Let him be part of this process, and let him make up many of the rules with your coaching/guidance. 2) Establish a system of rewards and negative consequences to reinforce good behavior, and again make sure to let your son be part of the process and think up rewards and punishments (limiting video game time has been very effective as a negative consequence in our home). The purpose for this approach is to teach the child that there are consequence for every decision they make, and so you must spend time with your son explaining all of this. Using rewards and consequences will not be effective without understanding...the child must understand why you are using consequences and this only comes with patience and communication. 3) Once the rules are established, be consistent with the rewards and punishments but also be willing to be flexible...if something isn't working, change it but also discuss the reasons for the change with your child. He must be part of the process and understand it. 4) Have a family meeting one evening a week, where the topic is "How to Make the Home a Happier Place." Stick to this topic, and give everyone in the family 5 minutes to talk without ANY interuptions about this topic (this is critical, no interuprtions)...this will allow everyone an equal chance to blow off steam and will also lead to peace and harmony over the long run. If you do this and are consistent with it, in time your family will begin to solve problems as a unit, including your son, and everyone will buy into making the home a happier place. You might also be surprised what you learn from your neurotypical children during these meetings :wink: 5) Finally, be patient, be gentle, and try to get to know your son as a person, rather than as a child.


I'm going to print this for reference if that's ok. All very good advice!



GrandmaG
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13 Oct 2009, 9:22 pm

I am not naive enough to think that my Grandson does not need special assistance, and I applaud the efforts being made by my son and daughter-in-law. We will work as a family and with professionals to help our little guy succeed and watch him enjoy his accomplishments. We will find a way to help him overcome the terror he feels, the frustration he feels and the anger he sometimes expresses.

My Grandson is a gift and I so look forward to taking him to practice hitting golf balls, beating me in video games, showing me how good he is in math, helping me set the table, giving me a big hug, going fishing with me and Grandpa on our boat, swimming off the boat (he wears a life preserver), watching the Bee movie for the 90th time, sleeping over, and listening to his philosophical comments.

GrandmaG



sarafina
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13 Oct 2009, 10:38 pm

Thanks for sharing your stories here. I am a 32 yr old mama of 3 kids...and my 7 year old son sounds SO very similar...esp the dental things - when he was 3 his teeth were a mess b/c he'd freak out when we'd try to brush them, and ended up getting knocked out and having all but 4 baby teeth crowned. At the time, I just felt horrible, like maybe I should've done a more thorough job brushing while he screamed and tried to punch me!

We are in the beginning stages of this whole thing...he shows nearly all the AS symptoms...he only eats certain foods and refuses to try new foods...hs big probs w/ meltdowns at school...has anger issues/social probs...on and on...in 1st grade I saw him getting depressed b/c he was punished day in day outpublic school was not working, I pulled him out to homeschool, sent him to 2nd grade at a charter school this year, and now I am pulling him back out. I do not have a formal diagnosis, so the school has told me they cannot access 1 on 1 supports for him.

They want to put him in an emotional support classroom. I can't imagine how he would react to all those noises, etc.....I can't do diddly w/out that flippin diagnosis and it is so frustrating and heartbreaking...and the IEP barely scratches the surface...I saw so many great suggestions on this forum! I am so thankful to have found the WrongPlanet! I am looking forward to getting to know other parents. Right now, my marriage is suffering...my 4 year old daughter is also displaying strange behaviors (she uses the phrase "humans" also ! how bout that?!) like she hurts the dog on purpose, or comes out with "I'm going to cut my head off!" during a tantrum....she asks me about dying and is sort of dark...happy and energetic, but dark...how possible is it that I have not one, but two kids with problems???? I'd love to hear from anyone! I have found no supports for families at this stage of the game....



DenvrDave
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13 Oct 2009, 10:46 pm

Sarafina, wecome to WP! :D

Hang in there, sounds like you have your hands full. I suggest you post a "Greetings" message on the "Getting to Know You" forum, and then start a new thread on the parents forum. You can get a lot of good advice here.