Developmental disorders/learning disabilities/genetic syndromes & more support group

[sequeena]

AP Also, happy belated birthday to Alex! :birthday: hope she had a lovely day!

Tiff we're lucky, the SW is doing it for us thankfully!

Bless those other kids it always makes me tear up a bit when other children willingly interact with Thomas. It's so sad, I know they are only children too but it breaks my heart when T just wants to play and they ignore him

All we've had today is a crying/whinging/throwing himself to the ground child. and he won't even go to bed.

 

[AP]

That ticket is confusing- it was her due date birthday this week weird to think she was four in June and it should have been September. It seems ages ago!

Snap with the behaviour though. She's been on the floor screaming because she can't get an iphone...this has gone on all day

 

[sequeena]

Haha omg oh dear

 

[essie0828]

Hey girls sorry I've been MIA, how are we all?

I took Thomas to Thomas Land on Saturday, he loved it it took him a while to warm up as he was so overwhelmed but I managed to get him on a few rides and we had a lot of fun. I can't wait to take him back sometime next year!

Yesterday I had my health visitor and a social worker from the child disability team at the house. Things are really moving now and I'm feeling a bit overwhelmed myself.

They're applying for all sorts of grants - for driving lessons, sensory equipment, a carrier (ergo/mei tai etc), a nursery placement and more. My head is spinning. I am grateful for all the support and so glad T is having this opportunity but it just hammers home how much support he does need and that is hard to deal with

The social worker will be back to tell me the results of the assessment then portage will be out in a few weeks to start working with Thomas. We're still in the process of getting him DLA. We've gathered together the reports from his doctors and my HV has written a letter of support. The social worker is also going to write one. I pray we get it. It would enhance Thomas' life so much.

I am just very emotional at the moment everything seems so much more real now and it's so hard to swallow.

You poor dear. It's harder when your DH is not on the same page as you.
DH and I had a stage like that, it lasted several months to. Ughh. Miserable times. I knew DD was different. I knew she had a neurological problem. But No One else in the family or her Dr.s would admit it yet. Even DH. It was very frustrating. He will see eventually but he's right to. T's gonna be just fine with help I'm sure he will be. They will help him communicate. They will help him adjust. They will show him how to help himself. All the therapies and aids this child disability team will help you access will help you guys loads. It's sad but really good to he's an amazing lil guy!

 

[essie0828]

Omg dito on the difficult child. Hayley just screamed and swatted at every nurse and dr today. All they did was gently touch her head. Then cranky all day. Trying to swat the dog, the cat, me.....ugh.... im hid in the bathroom while dh feeds her grapes and watches cartoons.

 

[essie0828]

I get a little upset that DD can't interact with other little kids but for other reasons. They just can't sit still and she can't move fast enough to follow Hopefully the braces her new pt is ordering will help with that. Bless them. They have really did their homework to help us for free. Its great.

 

[essie0828]

My little boy, age 2 now, did about 8 months of PT and now that he is walking well he is on to speech. Cullen can say "hi" "dada" and "uh oh". We took him off of gluten about three weeks ago and he has recently started saying "shoe" and "cookie"! I am so proud of him starting to talk more and he seems to be doing better off of gluten. He is in speech one day per week and in a fulltime daycare class with about 4 other kids ages 16 months to 2 and a half. The speech therapist says he has verbal apraxia, or trouble making the mouth movements needed for speech.

We have an appointment with a pediatric neurologist in October, which I am hoping will provide some answers about what is going on with him.

We are also thinking of taking him to the Autism and Communication Disorders Clinic at Georgetown for an updated assessment.

Hope your neurologist appointment goes well. I was really happy to get to talk to a pediatric neurologist finally. She was very thorough and knowledgeable. I hope they give you some insight.

 

[essie0828]

Tiff I'm glad seeing Claires' teacher and classroom helped put you at ease some. Wtg Claire for having a few little mates evidently

 

[essie0828]

Bumpin glad you got to see your little bean and that all is ok
Seeing that first flicker is the best

 

[Peanut78]

Big hugs Sequeena It's a process for sure, I still find I am on an emotional roller coaster with it all. I'll be fine for weeks and then have a week where I feel really down about it all. As Essie says, it also took my OH a while to really accept the extent of T's issues as well.

Tiff, that is wonderful you are feeling more reassured about school

Happy due date birthday Alex!

This week is a downer for me. I had a meeting with the SEN department and T's teacher yesterday. The meeting actually went well, but all morning I just had that sinking feeling of why does the need for this meeting even have to exist Why can't we just be one of those families that doesn't have to deal with SEN?

I was a bit irritated with the guy from SEN. I made it very clear that I don't want T to have a shadow teacher. We have been consistently advised this from his therapists and nursery teachers over the years, as he does not have behavioral issues and he actually benefits more from being pushed to get on with doing things himself. Anyway twice the SEN guy tried to indicate that T has behavioral issues based on what I was saying (basically so they can push a shadow teacher on us which they financially benefit from and makes the teachers life easier as she doesn't need to focus on T as well). Once it was because he's had a few accidents at school this last week- for which I quickly said there were numerous children who were having more accidents than him in the class - and how is that a behavioral issue? Secondly, when I was trying to tell them that I am pretty stern with T that there is no opting out even when something is difficult/ boring etc. - so I told them that at home if he is refusing to follow the rules he has the option to sit in the naughty corner or do as he is asked. The SEN guy jumped on this saying "that's interesting how often are you needing to do this?" - again trying to imply that T has a behavioral issue What because he throws a wobbly or doesn't want to finish his dinner sometimes, just like all children do?!?!? This makes me so irate as it couldn't be further from the truth - T is such a well balanced, happy, emotionally intuitive and generally extremely compliant child - please don't add problems that don't exist to all the issues we are already facing. If anything it's his little brother who doesn't have any developmental issues who acts up and spends a lot of time in the naughty corner! His teacher agreed with me that he doesn't have any behavioral issues.

Anyway in the end he will not have a shadow teacher, he will receive ST at school and he will be part of a group that has sessions which work specifically on motor skills I have to have another meeting with the SEN guy, T's teacher and his OTs/ ST in 6 weeks time to see if there is anymore support we can tailor for T (great now I can have a lump in my stomach for the next 6 weeks ). I wouldn't mind if T had extra learning support for certain sessions that are especially challenging for him such as hand-writing, I just don't want someone helping him specifically with everything consistently all day.

Ok, sorry that was long...

 

[bumpin2012]

that sounds stressful, peanut @_@

it's 4am. Have just managed to get a difficult child to sleep. and I have to be up in an hour for work. needless to say, I'm using a sick day.

 

[essie0828]

Peanut I understand why you don't want T to have a shadow teacher. Especially if his regular teacher agrees that he doesn't have behavior issues. Wtg momma for standing up to them You know him better and know what benefits him more. My DD is starting to show us that she responds better to a bit of a challenge as well. I have to admit though, I'm a bit of a pushover when it comes to her. Her new PT is a tough cookie though and DD loves her! She will be so much more patient with Miss Margret and she will work so hard for her. I think I need to get a little tougher

Bumpin my DD isn't sleeping well tonight either. Good idea on taking a sick day hun. You need one.

 

[essie0828]

Well ladies I have to brag on DD some. She's doing all kinds of new stuff, and I'm really proud of her and hopeful that her cognitive abilities will improve with time. She's starting to copy lots of our behavior, standing on her own for up to a minute (heels down!), and babbling all the time. She's figuring out the cabinet doors and I saw her celebrate to herself by clapping her hands when she got into a junk drawer I thought she couldn't open. Sneaky little girl. She originally rolled her ball in the kitchen and followed it in there...well when we heard her snooping around we snuck around the fridge and watched her without her seeing us. Up she stood and pulled open the drawer and chose a match book to play with I gotta clean out that drawer. It's such a change. But along with learning all sorts of new stuff she's having more tantrums and is hitting a lot when she's frustrated. She can land some rough knocks on us. Whew..... I hope this is just a phase because she's having trouble expressing herself. She's going to be a big girl, and she will be able to really do damage soon. She's almost 3ft tall already! 35 inches and 25 lbs at 18 months...... I have to get a hold on this hitting stuff or she could floor a therapist soon

 

[bumpin2012]

Essie, I would almost say the hitting is very normal. My friends little girl is 19 months and has been hitting for about 2 months now. Particularly when she's frustrated, or not getting her way

G let me sleep until almost 10! He had better sleep tonight. I don't mind his night wakings as he usually settles pretty quick, but last night there was no settling him.

 

[bumpin2012]

Needing to vent a little.

G has been backtracking lately. In August we had an emergence of more actual sounds "da", "ma", Ba", "Na" and less shrieks and grunts. He was responding to his name, could identify his nose and his tummy, and could clap his hands when you asked him to. Early September he passed his hearing assessment.

Now he is back to the odd "da" sound, but 90% of the sounds he makes are just grunts. He doesn't respond to his name, or identify his nose/tummy. He doesn't follow a single simple command. When he does make sounds, they sound odd, almost garbled.

Ive called the ENT department at our children's hospital and they will see him for reassessment in October. I just cant get rid of the sense that there is SOMETHING wrong with his ears. No professionals seem to believe me that something is not right with him. a 16 month old doesn't choose to completely ignore his parents. They may choose to ignore the request, but there is still an indication that the request was heard.

Hubby fully believes that there is something wrong, but will not accept that it may not be his ears, but a developmental issue. The mention of a developmental pediatrician assessment has been broached, but he refuses to go down that avenue.

I feel so discouraged because I feel that something is not right, but I cant explain it well enough that his dr's will listen to me, and I feel that I am letting my son down because I cant get them to see what I see.

Sorry for the long moan, I just needed to get that off my chest.

 

[sequeena]

Trying to catch up so bear with me

Hey girls sorry I've been MIA, how are we all?

I took Thomas to Thomas Land on Saturday, he loved it it took him a while to warm up as he was so overwhelmed but I managed to get him on a few rides and we had a lot of fun. I can't wait to take him back sometime next year!

Yesterday I had my health visitor and a social worker from the child disability team at the house. Things are really moving now and I'm feeling a bit overwhelmed myself.

They're applying for all sorts of grants - for driving lessons, sensory equipment, a carrier (ergo/mei tai etc), a nursery placement and more. My head is spinning. I am grateful for all the support and so glad T is having this opportunity but it just hammers home how much support he does need and that is hard to deal with

The social worker will be back to tell me the results of the assessment then portage will be out in a few weeks to start working with Thomas. We're still in the process of getting him DLA. We've gathered together the reports from his doctors and my HV has written a letter of support. The social worker is also going to write one. I pray we get it. It would enhance Thomas' life so much.

I am just very emotional at the moment everything seems so much more real now and it's so hard to swallow.

You poor dear. It's harder when your DH is not on the same page as you.
DH and I had a stage like that, it lasted several months to. Ughh. Miserable times. I knew DD was different. I knew she had a neurological problem. But No One else in the family or her Dr.s would admit it yet. Even DH. It was very frustrating. He will see eventually but he's right to. T's gonna be just fine with help I'm sure he will be. They will help him communicate. They will help him adjust. They will show him how to help himself. All the therapies and aids this child disability team will help you access will help you guys loads. It's sad but really good to he's an amazing lil guy!

Thanks hun. Sean is getting better with T's disability but he's still stuck on the 'he's fine' mindset. He does say about getting him sensory stuff/DLA etc so he's getting there.

Omg dito on the difficult child. Hayley just screamed and swatted at every nurse and dr today. All they did was gently touch her head. Then cranky all day. Trying to swat the dog, the cat, me.....ugh.... im hid in the bathroom while dh feeds her grapes and watches cartoons.

T kept randomly dropping to the floor whilst we were out today. Embarrassing but I just leave him to get on with it. Ugh can't wait for this phase to be over!

I get a little upset that DD can't interact with other little kids but for other reasons. They just can't sit still and she can't move fast enough to follow Hopefully the braces her new pt is ordering will help with that. Bless them. They have really did their homework to help us for free. Its great.

Isn't it so sad when they can't/won't interact it hits me more when he tries and other kids want nothing to do with him

Big hugs Sequeena It's a process for sure, I still find I am on an emotional roller coaster with it all. I'll be fine for weeks and then have a week where I feel really down about it all. As Essie says, it also took my OH a while to really accept the extent of T's issues as well.

Tiff, that is wonderful you are feeling more reassured about school

Happy due date birthday Alex!

This week is a downer for me. I had a meeting with the SEN department and T's teacher yesterday. The meeting actually went well, but all morning I just had that sinking feeling of why does the need for this meeting even have to exist Why can't we just be one of those families that doesn't have to deal with SEN?

I was a bit irritated with the guy from SEN. I made it very clear that I don't want T to have a shadow teacher. We have been consistently advised this from his therapists and nursery teachers over the years, as he does not have behavioral issues and he actually benefits more from being pushed to get on with doing things himself. Anyway twice the SEN guy tried to indicate that T has behavioral issues based on what I was saying (basically so they can push a shadow teacher on us which they financially benefit from and makes the teachers life easier as she doesn't need to focus on T as well). Once it was because he's had a few accidents at school this last week- for which I quickly said there were numerous children who were having more accidents than him in the class - and how is that a behavioral issue? Secondly, when I was trying to tell them that I am pretty stern with T that there is no opting out even when something is difficult/ boring etc. - so I told them that at home if he is refusing to follow the rules he has the option to sit in the naughty corner or do as he is asked. The SEN guy jumped on this saying "that's interesting how often are you needing to do this?" - again trying to imply that T has a behavioral issue What because he throws a wobbly or doesn't want to finish his dinner sometimes, just like all children do?!?!? This makes me so irate as it couldn't be further from the truth - T is such a well balanced, happy, emotionally intuitive and generally extremely compliant child - please don't add problems that don't exist to all the issues we are already facing. If anything it's his little brother who doesn't have any developmental issues who acts up and spends a lot of time in the naughty corner! His teacher agreed with me that he doesn't have any behavioral issues.

Anyway in the end he will not have a shadow teacher, he will receive ST at school and he will be part of a group that has sessions which work specifically on motor skills I have to have another meeting with the SEN guy, T's teacher and his OTs/ ST in 6 weeks time to see if there is anymore support we can tailor for T (great now I can have a lump in my stomach for the next 6 weeks ). I wouldn't mind if T had extra learning support for certain sessions that are especially challenging for him such as hand-writing, I just don't want someone helping him specifically with everything consistently all day.

Ok, sorry that was long...

Well done for sticking to your guns hun. You know your boy best!! Try not to worry too much, the 6 weeks will fly by and whatever happens happens. Us mums just pick ourselves up, dust ourselves off and keep going.

that sounds stressful, peanut @_@

it's 4am. Have just managed to get a difficult child to sleep. and I have to be up in an hour for work. needless to say, I'm using a sick day.

Oh bless, how are you now? Did you manage any sleep?

Peanut I understand why you don't want T to have a shadow teacher. Especially if his regular teacher agrees that he doesn't have behavior issues. Wtg momma for standing up to them You know him better and know what benefits him more. My DD is starting to show us that she responds better to a bit of a challenge as well. I have to admit though, I'm a bit of a pushover when it comes to her. Her new PT is a tough cookie though and DD loves her! She will be so much more patient with Miss Margret and she will work so hard for her. I think I need to get a little tougher

Bumpin my DD isn't sleeping well tonight either. Good idea on taking a sick day hun. You need one.

Did Hayley sleep?

Well ladies I have to brag on DD some. She's doing all kinds of new stuff, and I'm really proud of her and hopeful that her cognitive abilities will improve with time. She's starting to copy lots of our behavior, standing on her own for up to a minute (heels down!), and babbling all the time. She's figuring out the cabinet doors and I saw her celebrate to herself by clapping her hands when she got into a junk drawer I thought she couldn't open. Sneaky little girl. She originally rolled her ball in the kitchen and followed it in there...well when we heard her snooping around we snuck around the fridge and watched her without her seeing us. Up she stood and pulled open the drawer and chose a match book to play with I gotta clean out that drawer. It's such a change. But along with learning all sorts of new stuff she's having more tantrums and is hitting a lot when she's frustrated. She can land some rough knocks on us. Whew..... I hope this is just a phase because she's having trouble expressing herself. She's going to be a big girl, and she will be able to really do damage soon. She's almost 3ft tall already! 35 inches and 25 lbs at 18 months...... I have to get a hold on this hitting stuff or she could floor a therapist soon

Oh I'm so pleased, what a clever girl!! LOL T is about her height and 26lbs and he has had me over several times

Essie, I would almost say the hitting is very normal. My friends little girl is 19 months and has been hitting for about 2 months now. Particularly when she's frustrated, or not getting her way

G let me sleep until almost 10! He had better sleep tonight. I don't mind his night wakings as he usually settles pretty quick, but last night there was no settling him.

Uh oh I hate it when they sleep late it always means a bad night... but I always have a bad night anyway

Needing to vent a little.

G has been backtracking lately. In August we had an emergence of more actual sounds "da", "ma", Ba", "Na" and less shrieks and grunts. He was responding to his name, could identify his nose and his tummy, and could clap his hands when you asked him to. Early September he passed his hearing assessment.

Now he is back to the odd "da" sound, but 90% of the sounds he makes are just grunts. He doesn't respond to his name, or identify his nose/tummy. He doesn't follow a single simple command. When he does make sounds, they sound odd, almost garbled.

Ive called the ENT department at our children's hospital and they will see him for reassessment in October. I just cant get rid of the sense that there is SOMETHING wrong with his ears. No professionals seem to believe me that something is not right with him. a 16 month old doesn't choose to completely ignore his parents. They may choose to ignore the request, but there is still an indication that the request was heard.

Hubby fully believes that there is something wrong, but will not accept that it may not be his ears, but a developmental issue. The mention of a developmental pediatrician assessment has been broached, but he refuses to go down that avenue.

I feel so discouraged because I feel that something is not right, but I cant explain it well enough that his dr's will listen to me, and I feel that I am letting my son down because I cant get them to see what I see.

Sorry for the long moan, I just needed to get that off my chest.

hope they listen to you. It's hard when you have that gut instinct and no-one will listen. Thomas has only just started hiya again after losing all his speech!

I am feeling much more positive today girls. It's been a good day! When I got up Thomas' new slippers had been delivered along with a support letter from the social worker and even better when I checked my emails I realised I've won a competition. I've won a HTC Windows Phone!!

 

[essie0828]

Sequeena you lucky girl. Yay for winning stuff! My DH had an HTC Windows phone and loved it, I think you will be pleased. Hayley didn't sleep hardly any last night Poor kid woke up with a low fever and stuffy nose and has been so super grumpy. I guess being around new people she has caught a bug. Dh is off work and being really helpful though so I got to nap today I'm glad T is starting to speak again. I hope he picks up all his old words and more

Bumpin I hope you don't need a developmental pediatrician I hope he is just slowing down maybe because he feels a little under the weather. Hope you guys get some answers soon.

 

[essie0828]

Well here's to another night of cranky, whining, teething, non-sleeping toddler with a cold. Think I will make some tea and just give up on the idea of sleep. Poor kiddo isn't having fun either

 

[Peanut78]

Bumpin, is it possible that he is having a developmental spurt in other areas? My T has regularly mastered a new sound or movement etc, then suddenly in goes only to crop up again a couple of weeks later - it's usually always associated with learning some other new skill, or focusing on perfecting a very specific skill at the expense of others. I've never experienced them not coming back, although I have always felt worried during those times. As Essie mentions, maybe he is just a little under the weather

I know you said he doesn't necessarily respond to you and your hubby, but does he respond to noise in general?

I am much, much better today. I totally had one of those moment, as Sequeena put it - what will be will be - we'll just have to deal with it and get on with it.

Essie, hope you all manage to get some sleep and that LO feels better

 

[bumpin2012]

Peanut, I haven't noticed anything new. Maybe he is just not feeling well, but he seems to be acting fine. He slept fairly well last night, but Im worried. I've contacted our early intervention coordinator to see what her thoughts are. My MIL has hinted that she thinks he may be autistic, but I don't think that is it. He tries to initiate play with our dogs, and he has back and forth copying of gestures with the little girl I babysit. He also initiates hugs.

I think my hormones are overtaking my brain. Im so tired of not knowing what to do.

Essie, ugh. hopefully its a short lived bug. Hope you guys get some sleep soon!