Happy Birthday to meeeee!

[Stephanie]

James can just light up a room, Maisie! What a beautiful smile.

The one on one contact is wonderful. My brother currently has a "helper" as he finishes up high school. She is the most wonderful thing for him to have because she makes him less anxious for tests and interactions. And I''m also glad to hear that they aren''t trying to label him. It''s hard to get around those labels once they are placed - especially when they don''t exactly fit. We went through Landau-Kleffner labels to Autism and it was so hard to try to diagnose anything else once these names were put in his files.

Wonderful to hear about your eldest! I''ll send him some finals dust!

 

[Maisie]

Thank you Stephanie. Its good to know I''m not the only one dealing with this.. I hate how labels are placed and then the professionals seem to withdraw and leave you to it!

James has a wonderful doctor who is really helping him get the help he needs.

Thank you for your kind words about my son... he really is beautiful isn''t he!!!

 

[jas]

Happiest of happies, girl!

Your son is gorgeous...he has a very intelligent look in his eyes...goes with the smile!

 

[Maisie]

Thank you Jas! He gets that intelligent look from his mother

 

[Stephanie]

Oh, you''re welcome!

It''s hard to explain to people, even family. I''m glad to hear that he has a good doctor. That really makes a huge difference.

 

[Maisie]

My husbands mother doesn''t bother with James at all.. She never calls to see how he is. She lives about 300 miles away but is too busy concentrating on her ''normal'' grandchildren.

Oh now I have a bad attitude.

 

[zoebartlett]

Happy birthday Maisie! James is so adorable!!

 

[gwendolyn]

In some respects, James (love the name, by the way! Same name as my boyfriend

) sounds similar to my nephew Jack, with the delayed, private speech that only means something to the people he lives with (and maybe his caregiver at his nursery?). Jack was diagnosed with autism at the age of three because he too didn't make any sounds except this sort of humming sound. He also had a few more of the more common clues of possible autism--hand-flapping, specifically. He also has a fixation with running water (calms him down) and he avoids eye contact most of the time, except when you insist on it or he's in the mood. Jack's five now and in kindergarten with an extra support person in the classroom who is there for him and any other student who need a little extra help. It's AMAZING how much his speech has improved since he started school! He went to a special ed pre-school to get extra socializing time in but mostly in order for him to see a speech therapist--I think he went two or three times a week for the two years before he started kindergarten. That helped, but not like being at school all day long, interacting with the other kids. It also could have been an age thing--sometimes kids just aren't ready, but once they are, they fly! Jack's speech isn't perfect by any means, but he has made a lot of progress since September. For a while, we were wondering if he'd maybe need a communication device that non-verbal kids use (like a handheld computer sort of thing with big buttons with pictures on them that talks for him, to say "I am hungry" or "I need the loo" or whatever).

I think it sounds like you are doing everything you can, and I think it's great you and your doctor are in no rush to affix a diagnosis. As long as you're paying attention to what's going on with him, he'll continue to do the best he can and learn at his own pace, in his own way. Once he hits a growth spurt, the speech may improve a lot the way it did with Jack. The other stuff may be to do with autism, or they may be something else, or they may just be his personality. Only time will tell, but it sounds like you and your family are really great with him.

As an aside (which may have nothing to do with James), there is an interesting neural condition I've recently learned about (tried to do my research project on it) called a number of different things, but essentially it's a form of sensory sensitivity. Some people have a sensory system disorder where their bodies process information through their senses differently than we do, so what might be a comforting pat or stroke on the arm to you might feel like sandpaper to a child with this condition, and what's strange or unusual to us may be very comforting and pleasurable to them. There was a study done I think in 2005 that showed that it is a neurological condition--another study suggested that about 70% of people on the autism spectrum suffer some degree of sensory system disorders. I mention it, because of the peripheral stimulation you mention he likes to do, and because of the aversion to loud music and singing--reminded me of it (although it could also have NOTHING to do with it--I'm not trying to put any labels on him, but if he does wind up on the autism spectrum, this might be a piece of that puzzle).

 

[SarahLovesJS]

Happy bday!!!!

 

[Stephanie]

Date: 5/6/2008 6:07:53 PM
Author: Maisie
My husbands mother doesn''t bother with James at all.. She never calls to see how he is. She lives about 300 miles away but is too busy concentrating on her ''normal'' grandchildren.

Oh now I have a bad attitude.

No! No bad attitude on the birthday! It''s her loss - she''s missing that beautiful child''s life, not you!

 

[sevens one]

Happy Birthday!!!

 

[Dee*Jay]

Happy happy b-day Maisie!!!

 

[Miranda]

Yay Maisie! Happy birthday to you!

 

[diamondseeker2006]

Happy birthday, Maisie! Adorable picture of James! And I am so glad to hear your older son is doing well and planning for college!

 

[Maisie]

Thank you ZoeBartlett, SarahlovesJS, Sevens one, Dee Jay, Miranda and Diamond Seeker!

 

[Maisie]

Date: 5/6/2008 9:21:06 PM
Author: Stephanie

Date: 5/6/2008 6:07:53 PM
Author: Maisie
My husbands mother doesn''t bother with James at all.. She never calls to see how he is. She lives about 300 miles away but is too busy concentrating on her ''normal'' grandchildren.

Oh now I have a bad attitude.

No! No bad attitude on the birthday! It''s her loss - she''s missing that beautiful child''s life, not you!

Thats true. I shouldn''t make it my problem.

 

[Maisie]

Thank you Gwendolyn for telling me about your nephew. Its always really encouraging to hear about other children who have started to speak after they get help. James has a speech therapist and she says she has seen some improvement over the past few months.

Its interesting to hear about the sensory system disorder. I do feel that sometimes touch makes James uncomfortable, but not always. Could it be that its worse at certain times, like when he is upset or frustrated?

 

[bling addict]

Happy Birthday Maisie, Hope you had a great day!

 

[Maisie]

Thankyou Bling Addict. I had a great day

 

[gwendolyn]

Date: 5/7/2008 4:25:22 AM
Author: Maisie
Thank you Gwendolyn for telling me about your nephew. Its always really encouraging to hear about other children who have started to speak after they get help. James has a speech therapist and she says she has seen some improvement over the past few months.

Oh, I know, I was *so* excited when Jack made his first jumps in his speech! You probably know better than me how incredible it is to see a child go through a growth spurt and, last week they couldn't read a single word and this week they know 5! Or something like that. Seeing it happen with Jack, so that he could finally really start to communicate with us was really exciting. If James is already in speech therapy and making improvements, I have very high hopes that he will only progress even more, in greater jumps, the older he gets. The language window will stay wide open until he's seven years old, so he's got a lot of time yet. Jack didn't really start to steam ahead until he was about four and a half--the first year of his speech therapy, he made almost no progress at all. But he's doing well now, for which we are very thankful.

Its interesting to hear about the sensory system disorder. I do feel that sometimes touch makes James uncomfortable, but not always. Could it be that its worse at certain times, like when he is upset or frustrated?

Yes, absolutely, it would be worse at certain times than others, and (if it was something that was affecting him), could help trigger frustration or anxiety. This could especially be the case if he is not yet able to fully communicate with you (where you have to figure out what it is that's bothering him). There are things that you could try to do with him the next time he seems especially agitated, to help soothe and calm him. What works will vary depending on the child, but some things that have worked with my students in the past and my nephew are: getting an exercise/yoga ball about half as high as he is for him to bounce on it (the change in pressure in the ears is sometimes very soothing), getting a bucket half full of sand and having him knead his hands in it (or you pouring small amounts of the sand on the tops of his hands), getting him a small stress ball to squeeze in his hands if he is feeling frustrated or over-stimulated, turning the lights out in the room (sometimes it's not the light itself but the sound from the lights that can be distressing), making sure his clothes aren't scratching him if they are new. Things like that (there are more; that just gives you a taste). If none of this sounds like it might help him, then the sensory stuff maybe isn't what's bothering him, but if there's any chance it might help him, I thought I'd mention it.

 

[Maisie]

I''m really glad you mentioned it as its really helpful.

He hates wearing trousers of any kind. If he can take them off he will. Same with socks. He will only wear them if he is putting his shoes on - otherwise he cries if we try to make him keep them on. Also he hates anything on his hands, especially things like yoghurt and mushy stuff. He did let the teacher at school put paint on his fingers once, but they said his face was a picture.. he really didn''t enjoy it!

Another thing he won''t do is put his hands down on the floor. He sort of makes a fist but then puts his hand knuckles down... a bit like a monkey would (lol, thats the only way I can describe it!). He also does that while climbing the stairs.... I don''t know why he does this.

 

[Dandi]

Happy Birthday Maisie!!

 

[Harriet]

James is adorable. Happy birthday!

 

[gwendolyn]

Date: 5/7/2008 5:02:54 AM
Author: Maisie
I'm really glad you mentioned it as its really helpful.


He hates wearing trousers of any kind. If he can take them off he will.

Does 'any kind' of trousers involve really soft, broken in, gentle-to-the-touch trousers, like a pair that's been washed about 50 times, or maybe very soft sweatpants? It's possible that jeans or regular trousers are a bit too stiff and scratch him, and/or maybe his legs (for whatever reason) are extra sensitive.

This might sound totally kooky, but have you ever given him any sort of massage on his legs? I haven't had kids who's had issues with their legs, but I did have one student who hated to have things touching his arms because he said it hurt (I think it was really, really scratchy to him). Some days it helped to do a sort of deep-tissue massage kind of thing, where I'd roll up his sleeves and basically put slow pressure on areas of his arm, slowing covering the length of the skin. Sometimes that helped him--I guess it decreased how much stimulation he was getting from the shirt against his skin. It could be something to try if you are comfortable with the idea, but if you don't think he'd respond well to being touched in that manner, it's probably best not to try it.

Same with socks. He will only wear them if he is putting his shoes on - otherwise he cries if we try to make him keep them on.

Well, as someone who loves to go barefoot myself, I can't blame him too much for that one.

If his feet are extra sensitive as well, it could be that the socks are stiff and scratching him, or there might be fuzzies that end up between his toes which irritate his skin. Also, there is the possibility that he has a skin allergy and is sensitive to dye in your laundry detergent (I have that as well, and for some reason it didn't make me react from all my clothes, just most).

Also he hates anything on his hands, especially things like yoghurt and mushy stuff. He did let the teacher at school put paint on his fingers once, but they said his face was a picture.. he really didn't enjoy it!

That is a fairly common trait amongst people with sensory system disorders, to shy away from goopy, sticky substances (how does he react to glue?). I think it's a BIG (read: really positive) thing that he even tried the paint if he's usually very against that sort of thing. If he knew it was going to distress him and he tried it anyway shows that he's a fighter and doesn't want to be held back by what his body is telling him is good and bad. This probably, from time to time, causes him to feel very frustrated, though, either because he can see how easy it is for everyone else (he might be too young to notice that, but sometimes it's surprising the things kids pick up), or maybe because he doesn't understand how (and when he's older, why) people want him to act differently than he does. I've worked for a few years with 5 and 6 year olds at school, and they're all trying to figure out the world and why people do or don't do the things they do. It's especially hard when, what's natural to you, isn't natural to everyone else.

Another thing he won't do is put his hands down on the floor. He sort of makes a fist but then puts his hand knuckles down... a bit like a monkey would (lol, thats the only way I can describe it!). He also does that while climbing the stairs.... I don't know why he does this.

Eventually he'll probably be able to tell you himself why he does this. At a guess, I'd say it probably feels good, because making fists against the floor creates more pressure than merely putting your hands flat out against the floor. If he enjoys pressure, there are a few things you can try to see if they make him happy. This will probably sound awful at first, but my students with sensory issues were usually the ones asked to carry big, heavy baskets full of books to the library on the day the kids all returned their library books. Not because we're big into child labour or anything

but because the weight from the books is very calming to someone whose nervous system is always on high alert. The downward motion, the pressure on the joints from carrying a heavy weight, really helps to calm those students down. We also have a backpack filled with hardcover books (probably weighing about 25 pounds) that we keep in the back of the classroom that the student can wear sometimes if he is feeling extra bouncy/skittish/irritated/generally on edge. There are weighted vests that are available that children wear that have (as the name suggests) weights built into the vest, which acts again as a calming measure by pressing and pulling the torso down. Other things to try might be to do wall push-ups, to again get that pressure on the joints. Resistance of any sort can help--there are things called therapy bands which are like giant rubber bands which you can attach to the legs of a desk or a chair that he could push against with his legs (which might be good if his legs are often bothering him). If you have access to the services of an occupational therapist, he or she might be able to show you how to do some joint press exercises with him (I've only ever done wrists and elbows but I'm sure the same sorts of things can be done with ankles and knees).

I have not looked for any websites from companies here in the UK, but I know of a few in the US that offer things like the therapy bands, exercise balls, weighted vests, hand-held stress balls, etc. which I'd be happy to pass on to you if you are curious, but I would suggest talking to your doctor first to see what his/her thoughts are. I do think you can't really go wrong by trying a few wall push-ups or maybe seeing if a squeezy ball helps him, but I wouldn't want you to think I'm saying, "Do all this stuff! Now!" because I don't know James like you and your doctor do. Maybe this stuff could help, or maybe I'm only responding to a very small part of the big picture.

 

[strmrdr]

Happy Birthday!
one day late.

 

[anchor31]

Hey, May 6 is my birthday too (I turned 23 yesterday)!

Happy birthday Maisie!

 

[Maisie]

Gosh Gwendolyn! Thank you so much for taking the time to read my posts, and write such long ones back! Its really helping me to read your experiences with children similar to James.
He won''t wear any kind of trousers for long. Even his lovely soft pyjamas. I don''t think he would let me massage his legs, which is a shame as I would love to be a bit more hands on with him. I really crave the closeness that hugging and kissing and generally loving your baby gives!

I never thought it could just be personal preference with the socks! Maybe he is just like his mummy (I am always barefoot!) and his Auntie Gwendolyn!!! He also has my habit of moving his feet around a lot... My husband says it keeps him awake sometimes!

I think he only let the teacher put paint on his hands because all the other children were doing it. He wanted it washed off pretty quickly, but I was very proud of him for doing it in the first place. The teacher said he is a bit intrigued by glue. He puts a tiny bit inbetween his finger and thumb and opens and closes them to watch it stick.

I think I will buy him a stress ball. He will like that, what a good idea!

 

[Maisie]

Thank you very much DandiAndi, Harriet and Strm!!

 

[Maisie]

I love it when people say how cute James is, so thank you SDL and Harriet!!

 

[Maisie]

Date: 5/7/2008 11:58:06 AM
Author: anchor31
Hey, May 6 is my birthday too (I turned 23 yesterday)!

Happy birthday Maisie!

Yey!!! Happy birthday to you Anchor!!! I wish I was 23!