About Jack Jack.....

[catalicious]

Hey all, so as most peeps will know Jack is Developmentally delayed....More than likely because of his hydrochephalus, which is untreated...

We had a second opinion so we are having another mri done when our turn comes up in the line...

HE also had more assessments done in relation to how far behind he is now...

I didnt even know some of the things they look for where milestones...

But anyways with Physio he was 5 months behind apparently now he is 3months behind... With Ot he was 5 months behind he is now 4 and he is still waiting for his speech therapy appt...

I am not really knoweldgable in this area so im not sure why he would need speech therapy at his age, i personally think its kinda silly..

I personally think he is doing fine in regards to development, they are the ones that see the probs in him not me....:crying: Why cant they just be happy about the things he can do rather than the things he cant...??:banghead:

What I want to know if ANYONE can help me is, is this something which is related or does this sound fine...

I dont think Jack actually "gets" things IYKWIM like he just doesnt understand at all what we are saying or what we mean..

If we call him or say his name he responds and will crawl to us, but if we say no its like he doesnt get it, or if you say little things to him, Which by this age i think he should be understanding he just doesnt seem to know what i mean at all, like im speaking a foreign language...

Is this some form of milestone or i am way off and no babies understand anything like this...???

Sorry for the long post, I just hope someone read it and understood..:ecomcity:

[Lunar]

As I have said to you before, speech therapy is not only for children of talking age but for babies too, to help them exercise their mouth muscles properly so they strengthen which will aid in the devopement of speech. This includes babbling sounds. He should be saying Mum and Dad at least... and properly ie calls for you or Dan, or when he sees you he should say "MUM!" They will look at all these things when they do his speech assessment. They may even see if he can name a few objects too.

Comprehension is a tricky thing. You can usually tell when a child is understanding something you say. He may very well know what you mean when you say 'no' but could just be ignoring you, but because of his age I doubt it. Maybe you could try asking him to come to you but not use any gestures, (just making suggestions here)

This is just my humble opinion. Me being a parent of a child with special needs and also somone who studied child development.;)

[catalicious]

No advice peeps....

I am going to ask the paed when I see him again but thats not for another 2 weeks....

Just curious is all...

[catalicious]

Sorry your post must of been posted as I was typing mine didnt realise sorry!!1

[catalicious]

Maybe you could try asking him to come to you but not use any gestures, (just making suggestions here)

This is just my humble opinion. Me being a parent of a child with special needs and also somone who studied child development.;)

He says mum and dad now but I dont think all the time its in regards to us!!!

Like if he is crying he will just start saying mum mum, or dad dad when he is angry at me i think...

Im not really sure what you mean when you say just make suggestions.....What like clap my hands or pat on the floor in front of me??

Nice wink!! Good call....:D

He doesnt really say anything else.... Thats rather sad really, he used to be able to say nana and bubba but doesnt anymore :crying: :crying:

He doesnt say mum when he sees me he just gets really excited and bounces up and down...

[Lunar]

I just meant that I was just making suggestions as to things you can do to see if he understands things.

Wether you take them on or not is up to you.


He should have more words than mum and dad at this age. Just for example as they are similar ages, Kailah has about 8/9 words. She uses them in context. She will say Dad when he walks in the room, or will crawl around calling mum if she can't find me and when she sees me she shouts and points MUM! She also says finished when she has had enough dinner etc, she says issy (Missy, mum and dad's dog) she says nanna when she sees her, and says pop too. She also say whats that or who's that in the right situation too. this shows she understands what word goes with what.
Do you get it now?

[reAllytee]

I obviously have no expertise but i am tracking things ( hope you dont mind :o ) because this could have been my path & i find it interesting.

Dont stress about them only seeing what he isnt doing they arent trying to put him down hun they are trying to help him. So watching milestones & other characteristics is something they have to do. It isnt to make you feel bad :hugs:

Boof went through a stage where he stopped talking before that he said something like 6 words then just stopped. Everything was a meow or dadda, very frustrating being called a meow :rolleyes:
Then after about what 2mth he just started up again & added so much to his vocab it was unreal ! Many kids are like this as in they wait until they can say words properly before saying anything but also many are too busy focusing all their energy on physical things that they forget others.
We had a friend of a friend who's child still wasnt talking at all by 3yrs just as the appt for the speech therapist was coming up this kid talked. Not just a few words but started asking questions & speaking in clear full sentences. He had just decided to wait until he was ready to talk.
Some kids are like that.

At this stage i would just focus on getting Jack into his appts & really pushing to make them focus on the hydrocephalus & getting it cleared.
Just because he is delayed doesnt mean anything :hugs:

[catalicious]

I just meant that I was just making suggestions as to things you can do to see if he understands things.

Wether you take them on or not is up to you.


He should have more words than mum and dad at this age. Just for example as they are similar ages, Kailah has about 8/9 words. She uses them in context. She will say Dad when he walks in the room, or will crawl around calling mum if she can't find me and when she sees me she shouts and points MUM! She also says finished when she has had enough dinner etc, she says issy (Missy, mum and dad's dog) she says nanna when she sees her, and says pop too. She also say whats that or who's that in the right situation too. this shows she understands what word goes with what.
Do you get it now?


Oh I get it.... I thought you meant make suggestions to see if he will come to me without words.... :o :laughing: (laughing at my blondeness)

So is Kailah considered to be ahead cause thats alot of things she can say :yes:

That just makes me think that when we go to the appt with the speech therapist that she is going to say he is even furthur behind than what the others are saying.........

THIS IS SO STUPID!!@!!!!!!!!!

[catalicious]

I Dont stress about them only seeing what he isnt doing they arent trying to put him down hun they are trying to help him. So watching milestones & other characteristics is something they have to do. It isnt to make you feel bad :hugs:

Boof went through a stage where he stopped talking before that he said something like 6 words then just stopped. Everything was a meow or dadda, very frustrating being called a meow :rolleyes:
Then after about what 2mth he just started up again & added so much to his vocab it was unreal ! Many kids are like this as in they wait until they can say words properly before saying anything but also many are too busy focusing all their energy on physical things that they forget others.
We had a friend of a friend who's child still wasnt talking at all by 3yrs just as the appt for the speech therapist was coming up this kid talked. Not just a few words but started asking questions & speaking in clear full sentences. He had just decided to wait until he was ready to talk.
Some kids are like that.
:


They do make me feel bad though and so do heaps of other people.... Thats why I feel bad and silly even posting in this section!!!:o People do think I am the reason he doesnt do things because I study and stuff... I take him to his appt i do the things the say!!! :crying: Sorry not pointed at anyone in particular just frustrated at learning this about his speech.

They said something about he might have some muscle thing wrong with his whole body but mostly his jaw, cause he cant really step with his right leg and hardly chews if at all.... He mostly just swallows even if its put in the side of his mouth, he just moves it to the middle with his tounge, which is suprisingly long and then swallows it, might chew a few times but no where near what he should...

But lets just keep in mind that Einstein didnt talk at all until he was 5!!! Then he started talking like the above mentioned child...

[Lunar]

You see it's a tricky thing when they calculate how far behind they are. For example Emily is about 2.5 years behind (maybe more) in her speech. Her gross motor is spot on, there can be gaps of different sizes in every aspect of development.

The more you work on him the better he will be trust me. I've seen parents just take it all very blase and say "she'll do it in her own time" but if you push and put in the hard yards it will happen much sooner. Sitting him facing you (maybe in his high chair) talking to him and saying a word and showing him what it is (ie... ball) get him to watch your lips move, put his finger on your lip so he can feel it move then say "Jack's turn" and point to his lips. He may understand what you are suggesting but it will take a while. Nothing happens over night (although it would be nice though)but the truth is it's hard hard work, but it has to be done. if you don't do it, who will???

The reason the therapists look at what he can't do right now is so they can plan ahead in regards to activities and exercises for him. Not so you feel bad, but for you to know what areas to work on. They will tell you things he should be doing at his age, you will get upset but that just makes you want him to do it more, and therefor, encourage him more, push him harder etc etc etc.

[Lunar]

They do make me feel bad though and so do heaps of other people.... Thats why I feel bad and silly even posting in this section!!!:o People do think I am the reason he doesnt do things because I study and stuff... I take him to his appt i do the things the say!!! :crying: Sorry not pointed at anyone in particular just frustrated at learning this about his speech.

They said something about he might have some muscle thing wrong with his whole body but mostly his jaw, cause he cant really step with his right leg and hardly chews if at all.... He mostly just swallows even if its put in the side of his mouth, he just moves it to the middle with his tounge, which is suprisingly long and then swallows it, might chew a few times but no where near what he should...

But lets just keep in mind that Einstein didnt talk at all until he was 5!!! Then he started talking like the above mentioned child...

But this helps!!! You may not think it but it is actually getting him to move his tounge around his mouth and that is EXERCISE!!! Really it is! This will help to strengthen all those muscles we use to speak and chew and all taht stuff.


Einstein had asperger's syndrome (which is a form of autism):yes:

[catalicious]

I did not know that about einstein!!!!

I only hear people say not to worry cause einstein didnt talk until then....

[Lunar]

Lots of poeple don't know that about him but it's true.

[catalicious]

Someone said because I dont have the money to pay that I should contact a member for parliament in the local area and make a big deal about it...

And cause its an election year they will help me out with the actual problem..

Thats what the OT suggested..

She also suggested a cats exam to be done on him...

That sounds a bit daunting....we will see how it goes..

[reAllytee]

They do make me feel bad though and so do heaps of other people.... Thats why I feel bad and silly even posting in this section!!!:o People do think I am the reason he doesnt do things because I study and stuff... I take him to his appt i do the things the say!!! :crying: Sorry not pointed at anyone in particular just frustrated at learning this about his speech.

They said something about he might have some muscle thing wrong with his whole body but mostly his jaw, cause he cant really step with his right leg and hardly chews if at all.... He mostly just swallows even if its put in the side of his mouth, he just moves it to the middle with his tounge, which is suprisingly long and then swallows it, might chew a few times but no where near what he should...

But lets just keep in mind that Einstein didnt talk at all until he was 5!!! Then he started talking like the above mentioned child...


You see it's a tricky thing when they calculate how far behind they are. For example Emily is about 2.5 years behind (maybe more) in her speech. Her gross motor is spot on, there can be gaps of different sizes in every aspect of development.

The more you work on him the better he will be trust me. I've seen parents just take it all very blase and say "she'll do it in her own time" but if you push and put in the hard yards it will happen much sooner. Sitting him facing you (maybe in his high chair) talking to him and saying a word and showing him what it is (ie... ball) get him to watch your lips move, put his finger on your lip so he can feel it move then say "Jack's turn" and point to his lips. He may understand what you are suggesting but it will take a while. Nothing happens over night (although it would be nice though)but the truth is it's hard hard work, but it has to be done. if you don't do it, who will???

The reason the therapists look at what he can't do right now is so they can plan ahead in regards to activities and exercises for him. Not so you feel bad, but for you to know what areas to work on. They will tell you things he should be doing at his age, you will get upset but that just makes you want him to do it more, and therefor, encourage him more, push him harder etc etc etc.

Dont you dare feel bad or let anyone make you feel that way !!!!!
You are doing a great job you are coping with all of this the best you can !!!!

What Lunar is saying is true they have to assess him etc so try to look at it positively as hard as it is & focus on the good stuff like you are !!!
I also agree that the speech therapist is a great idea before it gets out of hand. We had a family friend who let her little boy go too long & it took him years through school to be able to say certain words.
Remember they are a great help the idea is just to work muscles just like a physio would if he needed help with his legs or arms. Even if it isnt serious the help goes a long way & will make him a more confident little man.
I dont mean this in a bad way but you have to swing this around & start looking at the postives & how this is going to help Jack & its the best thing !
A cat scan will not hurt either & i would get it done so that way you go in armed with all the scans & reports needed rather than being sent off for them afterwards. We did all of this with DP when he was injured because the to-ing & fro-ing gets ridiculous for all the tests as it is.
With the MRi where are you getting it done can i ask ? We didnt have the money to pay for DP's either so they waived it after we spoke with the imaging place. Have you spoken with them ?

Yes Einstein had "issues" yet look what he became so remember just because everyone is saying Jack isnt where he should be he can still grow up to be an amazing man !

[jessgray]

some of the greatest people have overcome diversty, tom cruise is dsylexic, enstien (sp?) had dyslexia and ADD from what i have been told, mozart 9i think it was him) was deaf.:D
your boy will do great things in the world and you will get to see it all happen.:yelclap:

[Can I?]

Sorry I haven't replied before. I haven't been on much (school holidays and all that). My son is developmentally delayed (he has autism) and it is hard to hear it, and to say it. He is beautiful and bright and happy, but in some areas he can't do what others of his age can't do. It is emotionally exhausting to go to appointments and tell people over and over again of your child's problems and (in our case) difficult behaviour. To have assessments come back and see printed on the paper below average or absent. It is hard because that is not what we want for our children. :hugs:

But I go, and I listen and I tell his story. And I read the reports and I worry about his future and I cry in bed in the dark. Then I get up and smile at my precious son, and know that I have to get as much help as I can so I can help him make sense of his world. I try to keep in mind that it is much easier for my son to learn these things earlier rather than later. And that all kids have strengths and weaknesses, and now we know what our son's are, so we can help him learn even better. Who knows....he could be the next Einstein? :thumbsup:

As far as Jack's medical condition goes, then I guess you need to have all the information you can about his development and so on, so that it can be determined that he needs treatment for his hydrocephalus. Sigh....it is hard though isn't it?

[kiwibird27]

Speech therapy is the only reason my 8 month old can still suck and swallow, they can be invaluable!!!!!

I remember the first moment I saw "developmentally delayed" written on something of my daughter's, I cried, then looked at her, realised she was what she was and decided to help her be the best she can be.

My first lesson however has been, I can only do what I have time for. After our first 3 1/2 month stint in hospital I got home and tried to be superwoman - the result - in tears in the corner, I couldn't figure out how to do everything and just lost it.couldn't leave the house. I have just gotten home after another 2 month stint in hospital with a calmer outlook, you can't blame yourself or fix all your child's "problems",

I force my paediatrician and different teams for answers and put as much pressure on them for the answers I once tried to figure out myself.

Our "special" children have changed our lives and perspective forever, It's not a bad thing though, it's just a more challenging thing

[Lunar]

A CATS assessment is not a cat scan, it is a developmental assessment to see where a child is at on the scale of development and age appropriate abilities.

This can be very helpful to professionals in aiding them to implement an individual education plan (IEP). An IEP is a child catered plan that will meet the childs special needs and will focus on his weaknesses (things he doesn't do so well) so he WILL be able to do them.

Emily's teachers set out an IEP for her every term, and a more detailed one once a year so that at the start of the next year we can look at it and see just how much she HAS achieved.

Once you get right into it you will understand more of how it all works. it is all for his benefit, yes lots of hard work but sooo worth it.

[Frazzled]

Hey Cat, good to see the docs are on to it. Just a couple of things from my perspective... About the says things and then stops - don't worry - Elliot does this all the time. He will say a word for a week and then forget it for a month and then it comes back again. Has favourite words at favourite times. He now (at 14 months) says mummy, daddy, harry (our cat), woof, dog, roar, ta, thank you, please, no, yeah, ball, ready, go, three, don't touch, yum, kiss, teddy, hello, jacob, nanna, pa, shoes, hot, ella and mia. But compared to the rest of the babies at our mothers group he says heaps more than a lot of them. One of my friends is really worried cause her 15 month old only says mum and dad but when i read up on speech development, it says that at 15 months, as long as they are babbling tunefully there is nothing to worry about.

Like others have said, the more you work on the skills the more they will progress. Reading books together and singing nursery rhymes are excellent activities to help with speech and juts talking with Jack will be great too.

I would also really be focussing on getting the hydro seen about but. And do not worry about what other people say - especially when they are hurtful:hugs:

[catalicious]

When do they learn to give you a hug!!!???I hug him all the time. And Loch is at the stage where his too busy to want to hug his mum...:rolleyes: :eek:

Its so good when A bub gives you a hug it make you think nothing else in the world matters...

[kiwibird27]

I would tell people that stared at my baby.with a nasal tube, that she was annorexic so has to be tube fed. She is very body conscience so please don't stare. I don't mind if they actually ask me why the tube but staring and following at the supermarket is not okay!!!