What do you wish for on Valentine''s Day?

[poptart]

DH and I really don't do much of anything for Valentine's Day, and honestly the past two years have be CRAP because we haven't been together for it. When we were in High School he used to put a card in my locker for Valentines day or write me a note or something but nothing real big (one year he actually MADE something, hahaha). 2005 though, he was in boot camp, so that year was botched. Last year he had a hotel room reserved for us... and then his ship had to leave and it was kind of a surprise thing so we couldn't be together. That situation was made even more awful because he cried. He said he had tried so hard to make that Valentine's Day special because I had just moved out here to VA to be with him a few months earlier and he knew it had been hard on me. So I spent the 13th sad, and he spent it beating himself up for not KNOWING the ship was going to leave (but they only told him that day, so he had no idea that it would happen). This year he's on deployment, so that's shot, too. I think we, as a couple, should just stay away from Valentine's Day... we just can't win!

So for Valentine's Day I wish for other people to at least get something out of it and not have our crap luck!


ETA: I hope that your son's test turns out ok Maise!
*M*

 

[Maisie]

Thankyou so much for the kind words. I got a bit emotional reading them.

Irish Angel - James has had his blood and urine tested for Fragile X Syndrome and he is about to have developmental tests done and assessments before they give us a final diagnosis.
We are in the UK so I''m sorry I don''t know what a Neuro-psych is. I don''t think they are called that here but James is under a Paediatrician. They seem pretty convinced by his behaviours that he is Autistic. Some examples are:

He has a funny twitch with his mouth that he does if anyone comes too close or invades his space
When he is playing he lines up his cars or trains and taps them one by one and then moves one and begins the tapping again.
He lies on the wooden floor and listens to his cars moving along - he will do this for a long time.
He doesn''t speak (he is 27 months old)
High pitched sounds such as screaming really frightens him. He gets really distressed and cries for ages.
He gets really frustrated with us and can be quite aggressive and angry.

I have four other children and I know that James is definitely different. I really don''t know if he is Autistic. He was one of twins and his sister was still born. I don''t know why she died (it was easier not to ask for the answers and I wanted them to leave her alone) but she was very deformed when born and the doctors think she had been dead for some time. (Sorry if this is upsetting for anyone). I wonder if the way James is would be connected with what happened with Madison. Its hard not knowing but whatever happens I will be the best mum I can be and love him with all my heart.

Maisie x

 

[Maisie]

Sorry didn''t mean to hijack the thread

 

[diamondfan]

diver, how sweet you are and I hope you get your perfume!!!

I would love to have the new Badgely perfume. I really liked it when I smelled it...

I might go to New York to the Westminster show, which is around Valentine's day...my Maya pup's uncle is competing so I am excited to go and watch him...Valentines is a week night so I am not sure what we will do...

 

[divergrrl]

Oh Maisie, you didn''t hijack the thread, hey I asked what folks wanted for Vday and I think your wish tops the list of wishes to be granted honey.

If it makes you feel any better, my son lays on the tile floors and listens to his cars rolling back and forth for HOURS. He''s 25 mos. old. Hopefully James is just a sensitive, quiet, child. And if it gives you any hope, my little brother was over 2 before he said anything, and then his first words were "Oh sh!t". My husband also did not speak until after 2, they thought something was wrong with him too, since one of his uncles was deaf & mute. Both were "babies" in the family, and the joke with my brother was that he couldn''t get a word in edgewise with me around (I was 6 when he was born and a total jabberjaw).

Here is a link to a great Autism website, its a non-profit org in the US....hopefully there is some information in here that may be of help for you. I don''t know a whole lot about it, but it is a fear in my life, since the state I live in here in the US has the highest rate of Autism of any other state.

I remember reading that the earlier it is diagnosed, the better chances for the child to have a normal life. I believe that there is a lot of therapy you can do when they are this young that makes a HUGE difference.

Carry hope in your heart, you sound like a wonderful mother, and regardless of the outcome, you and James will prevail.

But I''m pulling for you and James and hoping for a good diagnosis. You''ve been through a lot, you''ll be in my prayers.

Jeannine

http://www.cureautismnow.org/site/c.bhLOK2PILuF/b.1021889/k.BFD8/Home.htm

 

[poptart]

Date: 1/19/2007 12:21:13 PM
Author: divergrrl
Oh Maisie, you didn''t hijack the thread, hey I asked what folks wanted for Vday and I think your wish tops the list of wishes to be granted honey.

If it makes you feel any better, my son lays on the tile floors and listens to his cars rolling back and forth for HOURS. He''s 25 mos. old. Hopefully James is just a sensitive, quiet, child. And if it gives you any hope, my little brother was over 2 before he said anything, and then his first words were ''Oh sh!t''. My husband also did not speak until after 2, they thought something was wrong with him too, since one of his uncles was deaf & mute. Both were ''babies'' in the family, and the joke with my brother was that he couldn''t get a word in edgewise with me around (I was 6 when he was born and a total jabberjaw).

Here is a link to a great Autism website, its a non-profit org in the US....hopefully there is some information in here that may be of help for you. I don''t know a whole lot about it, but it is a fear in my life, since the state I live in here in the US has the highest rate of Autism of any other state.

I remember reading that the earlier it is diagnosed, the better chances for the child to have a normal life. I believe that there is a lot of therapy you can do when they are this young that makes a HUGE difference.

Carry hope in your heart, you sound like a wonderful mother, and regardless of the outcome, you and James will prevail.

But I''m pulling for you and James and hoping for a good diagnosis. You''ve been through a lot, you''ll be in my prayers.

Jeannine

http://www.cureautismnow.org/site/c.bhLOK2PILuF/b.1021889/k.BFD8/Home.htm

This is very true Maisie. And there are also different severities of Autism. A family friend has a son with Autism, and they diagnosed it very early in his life, around two or so I think. But the parents put him in workshops that specialized in Autism and he also went to a Special Needs school for a while once he started kindergarten. Anyway, he is about 8 now and he is going to a normal school and is in the same class as his twin brother, who does not have Autism. He can carry on regular conversations and express his feelings just like any other child. He still has sensitivity to noise and certain situations where he will act out, but overall he is leading a normal life. Also, in addition to the Autism, and the doctors think as a possible result of it, he is VERY good with music. He can compose music on the piano and taught himself to play and he is only 8! He can hear something on the radio and play it back to you on the piano as well. So, with the right treatment sometimes Autistic children can lead relatively normal lives. His parents also helped because although they recognized he had special needs, they put an emphasis on treating him as a "normal" child and letting him learn at his own pace.

*M*

 

[Maisie]

Divergrrl I had to read your post out to my hubby. We are both giggling like kids here at the thought of your brother swearing! Thankyou for making us smile!

I will check out that website too. Its great to know your son does the toy thing too - I haven''t seen it done before. Mind you we didn''t always have wooden floors!

I will take it a day at a time. If he is diagnosed as Autistic it will be ok. I trust God! Everthing happens for a reason and I won''t argue with my life plan.

Thanks again

 

[Maisie]

Thankyou poptart. That is a really inspirational story. I think, when faced with something like this, that its easy to look at the worst possible scenario and get carried away with ''what ifs''.

I''m really grateful that even though I am pretty new here, people have been so supportive. I don''t have a lot of support here as my sister moved away and I hardly see her.

Thankyou!

Maisie

 

[poptart]

Date: 1/19/2007 12:39:09 PM
Author: Maisiebelle
Thankyou poptart. That is a really inspirational story. I think, when faced with something like this, that its easy to look at the worst possible scenario and get carried away with ''what ifs''.

I''m really grateful that even though I am pretty new here, people have been so supportive. I don''t have a lot of support here as my sister moved away and I hardly see her.

Thankyou!

Maisie

I forgot to add this link: http://www.nas.org.uk/

It''s the National Autistic Society and is based in London. They offer support for the families and children. I hope you get your Valentine''s wish though!

*M*

 

[Gypsy]

Maisie... I hope that you get your wish!

Poptart-- your post was sad! I hope that maybe something happens for you, if not this year then next year, to make you smile when you think of Valentine''s Day, instead of frown.

 

[diamondfan]

Maisie, my heart goes out to you. I hope it all comes out well, that is the most important thing. Sending positive vibes to you.

With any of the developmental disorders on the autism spectrum, from mild to most severe, early detection and intervention is key. So just know, if he does have it, that you are doing the most important thing for him. I also think some doctors/professional people just do not "get" a kid who is different, they think inside the box only. If a kid does not fit into the main chunk of the bell curve, it can flummox them.

My 5 year old is a quirky little guy, I was worried about him and went to the head pediatric neurologist at our Children's Hospital in Philly. It happens to be one of the best in the county. He told me developmentally he was fine (though he currently has OT with a handwriting specialist because his fine motor skills are not top level at the moment)...but that he might be a quirky kid, and that is okay. He told me that we are not all from the same cookie cutter, nor should we be...we need to have things that makes us unique. Everyone is different, has reactions to things around us...I know adults I would classify as eccentric or different, but they are smart and happy and have found what works for them in life. My oldest has OCD and Tourettes, but is incredibly birght, sensitive, loving, funny, an amazing runner and super talented guitarist and yes, a teen age pain in the butt, but I would not change him for the world. I only know that he feels pain, and thinks he is the only one who suffers in this way, which is not true, but kids have a tough time accepting that. I wish he was not so tough on himself, but he is a great kid and I hope we can come through this to the other side and have it all be okay at the end of the day.

 

[lumpkin]

Date: 1/18/2007 4:56:49 AM
Author: Maisiebelle
If I could have anything for valentines day it would be that my 2 year old son James isn''t Autistic. (we will be getting the results of his tests around the middle of February).

Other than that I really want a silver necklace from Tiffanys.

Maisie

Maisie, please update us. I have two on the spectrum, so I''ll be watching for the results.




VDay??? OMGosh, I have no idea. My husband likes WWII fudge, his mother''s recipe. It is very yummy, but I haven''t made it in awhile and I don''t think I still have my candy thermometer. Hmmmm. I honestly don''t want anything except a card. For my birthday my husband and kids made a really, really nice card for me. Maybe I''ll do something like that for my hubby.

 

[Maisie]

Diamondfan,

Thankyou for your post.

Your children are lucky to have you as a mother. You do everything for them to make them happy and comfortable. I know your eldest son will come through this because he has you. It can''t be easy for any of you but still you show that you are positive and have hope that one day things will get better.

My eldest son Tom is 16. He has had a very stressful life. His Dad and I separated when he was only 5. The way it affected Tom was an inability to sleep properly. He has a very bad temper and is very irritable most of the time. He loses himself in his music (he taught himself to play electric and bass guitar and drums) and woe betide anyone who gets in the way of that. I requested some therapy for him but he wouldn''t go when it was offered. He felt like he was being patronised and the best advice they gave him was to buy a punch bag and take his temper out on that! I disagreed with this - I felt that I didn''t want him to use his fists to solve his mood swings.

You describe your 5 year old as ''quirky''. Maybe thats all James is. I hope thats the case. Its really daunting that he may be Autistic. I bet I sound really selfish. I don''t mean to be but its all a bit scary just now. I am sure that if he is we will get the right support and life will move on.

Why is it that time always goes slowly when you are waiting for something important!

 

[Maisie]

Maisie, please update us. I have two on the spectrum, so I''ll be watching for the results.

I will definitely let you know as soon as I have the results. We should hear in the middle of February sometime. I wish it was sooner, I''m hopeless at waiting!

Maisie

 

[lumpkin]

Maisie, the waiting is very hard. I have to echo what others have said. Early intervention is so very important. The other thing I''d like to tell you is that autistic children can be quite empathetic, even though it is said they are not. My children definitely are and do connect with other people. They are 5 and 9. The older one has Asperger''s and the younger one has PDD-NOS, and very much of the time you would not realize they are very different from anyone else. Other times, it''s pretty obvious. Try to remember that it is a spectrum, and that there is as much diversity among autistic people as there is among everyone else. And autistic children ARE often gifted with something special, some ability -- even if it isn''t earth quakingly brilliant. My older child sees everything. He can walk into a room and he sees up, down and all around, and his gift of observation is amazing. My younger one is gifted with creativity and learns very quickly. But he gets highly over stimmulated, jumps up and down and flaps his hands all the time, so people sometimes overlook how intelligent he is. Anyway....

If the diagnosis comes back positive, there is such a wealth of information and such a community (at least on line) of families for support, know that you are definitely not alone.

 

[diamondfan]

Masie, my friend''s son has Fragile X, it is very sad to see and I know someone who has a son with autism too. Heartbreaking as a parent.

My oldest also is totally into music. He loves it and wants to be a rock star. Because of his OCD he practices a lot, almost too much, and really would be happiest playing guitar all the time. School and other things intervene. He hates them for taking him away from his music. We have lessons at our home twice weekly and he wants three times, but I fight him every night about doing his actual work so I am not in favor of it. He is in therapy, he complains but I just take him, puberty is tough enough and adding all this in to the mix makes things harder. But again, he is popular, a really good kid, a go to kind of kid for his friends because he is supportive and kind, and he is loving and protective. (not to make jokes, either, but he keeps his room neat, something that my 11 year old does not do, his room looks like someone ransacked it!)...I guess ultimately, we love our kids with all our hearts and we do all we can to help them, and I will pray and hope you have a good report from the doctor.

 

[Cehrabehra]

Date: 1/20/2007 12:14:18 PM
Author: diamondfan
Masie, my friend''s son has Fragile X, it is very sad to see and I know someone who has a son with autism too. Heartbreaking as a parent.

My oldest also is totally into music. He loves it and wants to be a rock star. Because of his OCD he practices a lot, almost too much, and really would be happiest playing guitar all the time. School and other things intervene. He hates them for taking him away from his music. We have lessons at our home twice weekly and he wants three times, but I fight him every night about doing his actual work so I am not in favor of it. He is in therapy, he complains but I just take him, puberty is tough enough and adding all this in to the mix makes things harder. But again, he is popular, a really good kid, a go to kind of kid for his friends because he is supportive and kind, and he is loving and protective. (not to make jokes, either, but he keeps his room neat, something that my 11 year old does not do, his room looks like someone ransacked it!)...I guess ultimately, we love our kids with all our hearts and we do all we can to help them, and I will pray and hope you have a good report from the doctor.

wow - and here I thought everyone was discussing baubles!! I have a cousin with fragile x who is now nearing 50 years old. For the past 10 years or so he has been living in a group home and has a part time job. For years he was very sheltered at home because people just didn''t care for their own kids - my aunt was given a hard time by everyone for not institutionalizing him. A child born now would get MUCH more help and be productive much earlier than 40. Relatively productive. That said weve been dealing with ADHD and spectrum issues here as well. My middle child has been through so much testing for autism and related issues and everything is inconclusive. (he scored 10/12 markers and they told me that while 0/12 is normal he''d have to get 12/12 so his unofficial dx is "quirky") He''s scheduled to go through another round of testing for dyspraxia. He has sensory integration issues but he is HYPO instead of HYPER sensitive an it throws the answers on the testing which weigh much more heavily toward hypersesitive issues. Even still, he is functioning mostly and very bright regardless. My oldest DD has pretty severe yet classic ADD and that is a very trying issue here ::sigh::

To all of you dealing with these issues - lots of warm hugs and wishes of strength for you and your families...

 

[Maisie]

Its amazing how many people know someone with Autism or Fragile x etc. I know one person too - he has asperger syndrome. He still lives with his mum (she is about 70) and he seems scared of people. He can sit in church full of people but if you go up to him he really panics. He seems to like shaking my hand but he has to shake mine. The first time I sort of gripped his hand and he really got upset. He actually ran away. I felt really sad that I had upset him but the next week he came over again and shook my hand. I worry what will happen to him once his mum is too old to take care of him.

I think thats my biggest fear. If James is Autistic or any other syndrome - what would happen to him once Gary and I have gone. Gary is 9 years younger than me so I guess he may last longer lol.... There are five children in total but to expect one of them to take over would be a lot to ask.

I know I may be worrying for nothing but you just can''t help it can you?

Maisie

 

[gail013]

Maise-

I am sorry to hear about this. Why will it take so long for you to find out-does it take that long to have the testing done? I hate waiting too.

 

[IrishAngel7982]

Gail~DNA screenings for these disorders do take a long time. Maisie, thanks for updating us with this information. I was confused when you said you had to wait until February for the results, but now that you mention the pediatrician is testing for Fragile X it makes more sense.

One of my students has fragile x. She is a wonderful child. If the results confirm this for your son, it won''t necessarily mean he is autistic. Fragile x occurs when a genetic mutation takes place and it is often comorbid with characteristics autism (ie repetitive behaviors or sensory integration problems), but not all the time. What you described re: your son''s behaviors does sound like he''s showing signs that he may be on the spectrum, but do not worry! Early detection leads to early intervention, and early intervention is key. Don''t worry about tomorrow yet...deal with today! Through the proper education and therapy, your son will learn how to function and recognize that his body works differently, and there is absolutely nothing wrong with that.

If the blood tests come back without a diagnosis of fragile x, remember that autism, asperger''s, and pdd (pervasive developmental disorder) are all diagnosed clinically, through observations and screenings. I can''t imagine what your family is going through right now, but your son will definitely be a wonderfully contributing member to society. If you''re interested, the National Fragile X website is http://www.nfxf.org/ . It''s an American foundation but it has a lot of helpful information about Fragile X Syndrome, should this be the diagnosis.
Good luck and we''ll be praying for you! Please keep us updated and if there is anything you need help with, you know where to find us.

 

[diamondfan]

Asperger''s is a on the spectrum but is less severe, though people with it have social anxiety, find it hard to connect emotionally and also tend to want to focus on or discuss one topic that interests them, to the point of driving others away. Often they lack affect, and seem to be more factual about things rather than passionate. They might, for example, be able to recite statistics about baseball, and when the game originated or what the first baseball was made of, but there is often a lack of connection to the topic at hand. They also tend to miss social cues, such as the fact that others might want to talk about something other than baseball, and they do not understand why someone might not want to go on for hours. I think many kids might show bits and pieces of a disorder along the spectrum but that does not mean that they have one of the disorders...for example, not making eye contact is part of some of these disorders, but there are kids who do not make eye contact who have nothing along the continuum. I have heard that arm flapping is a sign of autism and my friend''s daughter who was diagnosed was flapping, but she has many other symptoms too and it was not just one thing or two things viewed in isolation. Again, the most crucial thing is early diagnosis and very hands on and proactive treatment, whatever it might be that is deemed appropriate. I know parents who refused to accept the dx and just did nothing, which is terrible to me, because the kid really would have been better with some treatment geared toward their issues. Toughest thing a parent can face, something being wrong with their child...

 

[Maisie]

I really appreciate the time people have taken to post messages here. Its really helpful to hear real life stories. I think when you hear the word ''autism'' you immediately thing of a disability and a person who just can''t function in every day life. To hear that there are so many lovely children and adults who have overcome this to become such special and valued people really gives me hope.

Its true though - something potentially being wrong with your child is really difficult to deal with. After losing Madison I really hoped that would be the end of the bad stuff.

Maisie

 

[diamondfan]

Maisie, thinking of you, and hoping all goes well. You have suffered already, to lose your daughter. I am sure you are a strong and amazing person, and I just wanted you to know someone here in Philadelphia is wishing you well while you are going through this stressful time.

 

[Tacori E-ring]

good luck Maisiebelle.

I hope I at least get a card.

 

[Maisie]

Thank you again for your kind words. It really means a lot.

A quick update: James has had his development tests and he is scoring as exactly where he should be for his age. He was really cute when they were trying to get him to do things and the Doctor was laughing a lot. He especially loved the little dolly - he kept kissing her then dropping her on the floor!!

He is now waiting for the main test - I can't remember the name for it but its basically testing him for autism. I don't know what they do but I am hoping he does well in that too.

I feel really emotional at the minute. The slightest thing is making me cry. I really am hoping everything is going to come back normal.


Thats James in my avatar with his lovely daddy

Maisie

 

[Sundial]

Date: 2/3/2007 1:34:49 PM
Author: Maisiebelle
Thank you again for your kind words. It really means a lot.

A quick update: James has had his development tests and he is scoring as exactly where he should be for his age. He was really cute when they were trying to get him to do things and the Doctor was laughing a lot. He especially loved the little dolly - he kept kissing her then dropping her on the floor!!

He is now waiting for the main test - I can''t remember the name for it but its basically testing him for autism. I don''t know what they do but I am hoping he does well in that too.

I feel really emotional at the minute. The slightest thing is making me cry. I really am hoping everything is going to come back normal.


Thats James in my avatar with his lovely daddy

Maisie

Your James looks like a real sweetie Maisie and I hope too that the test comes back normal!!!

 

[DonaBella]

Date: 2/3/2007 1:34:49 PM
Author: Maisiebelle
Thank you again for your kind words. It really means a lot.

A quick update: James has had his development tests and he is scoring as exactly where he should be for his age. He was really cute when they were trying to get him to do things and the Doctor was laughing a lot. He especially loved the little dolly - he kept kissing her then dropping her on the floor!!

He is now waiting for the main test - I can''t remember the name for it but its basically testing him for autism. I don''t know what they do but I am hoping he does well in that too.

I feel really emotional at the minute. The slightest thing is making me cry. I really am hoping everything is going to come back normal.


Thats James in my avatar with his lovely daddy

Maisie

Hi Maisie...after reading about your situation with little James and everyone''s responses, my V-Day wish is that you get YOUR wish for V-Day!

Best of everything to you...

From my viewpoint as a busy and blessed mom of 9, I can''t think of anything I''d want more this V-Day than for another mom to get such a precious gift...and, like you said, if the tests turn out differently, you will be ok because you have the Lord!

From me to you!

 

[lawmax]

Maisie,

I'm a pediatric speech-language pathologist and have a son with some special needs.

Please check this out and seek out a practitioner in your area. I have been impressed, both as a therapist and as a mother. Judith Bluestone, the creator of the program, is an autistic woman. The HANDLE practitioner found issues with my son's visual and other systems that nobody else ever discovered.

www.handle.org

Seeing your son emerge given all help to his sensory systems,

lawmax

 

[Maisie]

Thank you sundial - isn't he beautiful? Oooh I love him!!

Deanne your words really moved me. You are a lovely woman! 9 children! Wow thats brilliant! Big families are amazing!!

 

[Maisie]

Date: 2/3/2007 2:18:00 PM
Author: lawmax

Maisie,

I''m a pediatric speech-language pathologist and have a son with some special needs.

Please check this out and seek out a practitioner in your area. I have been impressed, both as a therapist and as a mother. Judith Bluestone, the creator of the program, is an autistic woman. The HANDLE practitioner found issues with my son''s visual and other systems that nobody else ever discovered.

www.handle.org

Seeing your son emerge given all help to his sensory systems,

lawmax

Thank you lawmax. I don''t know if there will be anyone connected with this where I live (uk) but I will definitely have a look. I really appreciate you taking the time to post.