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wow my first post on this board...would love to talk to those btdt

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prunepie
LIF Adult

Member since 7/06

4357 total posts

Name:
jennifer

wow my first post on this board...would love to talk to those btdt

hi everyone and happy holidays.

I need to share and I need to connect with other mommies who are btdt or are going through this as well.

I would love to give a little backstory about my son.(conceived via ivf!)

Braydon was born may 3, 2012. c section 40 weeks to the day. one week in nicu as precaution bc I had infection during labor. he needed a weeks dose of antibiotics.
he began screaming a few weeks after coming home. always seemed in pain. never content. I wrote pages and pages on the parenting board...and after seeing many doctors they concluded a horrrrible case of colic. so alimentum, axid for reflux and a lot of wine for mommy . jkjk he sort of outgrew the all day screaming around 5 or 6 months...and then Sandy hit and we had to stay in a basement for months so all routine(not much to begin with) went out the window. he had multiple ear infections and still we were lucky if he napped more than 20 minutes at a time or slept for 5 hours at night. helllllll of a year. we moved home last april and struggled still to get in a routine of sorts. he was walking by 11 months and a very very socialable kiddo. yapping and babbling non stop and a whirlwind of energy.

my inlaws and people always would say omg isn't it great when they kiss you and hug you and call you mama?? I was like...um no...he doesn't do any of this. and I would hear...oh hes a boy...hes so physical ...he will eventually but don't worry.
well I did and still do. he is now almost 20 months old and doesn't talk and has only kissed me 5 times. I can hug him or wrestle with him but he wont come to me for affection.

my biggest concerns have been no momma , dada.....he says light and car but that's it. he does not stop. I mean does not stop ever. he runs and touches everything. cannot sit still for more than a minute or two unless its nighttime milk on my lap. he is almost frenetic in his pace and whines and cries out a lot and gets super irritated and frustrated often. I was thinking it was just bc he cant talk but...something still felt off. and he loves to roughhouse but does not often want to be kissed or cuddled or hugged. in fact he pushes away more often then not. and it killlllls me.

so fast forward...we finally got early intervention eval. waiting for official reports and to meet with case worker to go over everything...but so far....the educational evaluator suggested we get occupational therapy eval because they are concerned with " sensory processing" issues they observed. and the speech therapist said he qualifies for early intervention because he is only 1% percentile in speech for his age.
my little baby needs help. and even though we haven't had the occupational evaluation yet....after googling...I just feel know in my heart something isn't "clicking" for him.
something is bothering him. and I realllllly feel he wants hugs and cuddles and kisses but it annoys him or makes him uncomfortable and he doesn't ever seem to be comforted by me. I cant show my baby the love I really want to. and also he does not have any separation anxiety at all. honestly I think at least by how he acts, that he could care less if mommy was around. as long as there is action action action...and some food and water hes ok. I don't know if this makes sense.

anyways....waiting for call for the occupational eval but for sure he will be getting a speech therapist to help us help him.

I feel soooooo alone is this and just don't know what to do or think or how to take in all this new information or even how to evaluate his progress or how to know if the teachers are good kwim?

I love my boy. I just want him to be happy and I want to be able to show him love like I see so many other mommies able to do.

if anyone cares to share..i would so appreciate it!!

xoxox jenn

Posted 12/24/13 2:35 PM
 

MorningCuppaCoffee
Tired!

Member since 12/07

16353 total posts

Name:
Allison

Re: wow my first post on this board...would love to talk to those btdt

I don't have any major advice but wanted to send some Chat Icon Chat Icon Chat Icon Chat Icon .


I understand how overwhelming and isolating it can be to have a child who is "different".

Waiting for all these evals is also frustrating, I hear ya.

Posted 12/26/13 5:38 AM
 

EricaAlt
LIF Adult

Member since 7/08

22665 total posts

Name:
Erica

Re: wow my first post on this board...would love to talk to those btdt

First off.... Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon

It is stressful to know there's something "off" with your child, but they're so young and can't communicate with you.

You sound a little similar to my DS. He's 4 now and doing soooo amazing! Took a lot of time, therapy and patience. I read the book "raising a sensory smart child" which was really good.
DS is just diagnosed with developmental delays. He had speech delay (expressive and receptive delays) along with sensory issues. He never said "mommy" or "daddy" for the longest time. I felt the same way when parents would sort of complain about how their 1 1/2 year old or 2 year old would call them all day long. I never knew what that was like. If DS got hurt he just screamed and never could tell me what happened. He pretty much ate baby food till a little after 2 then he had the smallest food choices after. I feel like just after 4 things started to click. He still has trouble telling me what happened when he got hurt. Sometimes my 2 yr old DS has to tell me what happened if I was in the other room.
Just keep doing what you're doing. Get the therapies, work with DS and be VERY proactive. The more you speak up the more help your DS will get. He's in preK now is the special ed program. I talk to his teachers all the time and his case manager. At one time I was going to a neurologist bc I thought something was wrong. I never did and as I said he's doing amazing now. If I explain things to him he understands more where as before he'd scream and close anyone out. He still gets anxiety when it comes to sounds, textures, etc. Now he can talk it through and do better.
FM if you have any questions. My DS was also born C section. He was over a week late and went to the hospital to get induced, but when I started having contractions at the hospital before they did anything his HR dropped and he was a crash c.
Chat Icon Chat Icon

Posted 12/26/13 1:20 PM
 

prunepie
LIF Adult

Member since 7/06

4357 total posts

Name:
jennifer

Re: wow my first post on this board...would love to talk to those btdt

Posted by MorningCuppaCoffee

I don't have any major advice but wanted to send some Chat Icon Chat Icon Chat Icon Chat Icon .


I understand how overwhelming and isolating it can be to have a child who is "different".

Waiting for all these evals is also frustrating, I hear ya.


thank you for your kind words!! :)

Posted 12/26/13 9:26 PM
 

prunepie
LIF Adult

Member since 7/06

4357 total posts

Name:
jennifer

Re: wow my first post on this board...would love to talk to those btdt

Posted by EricaAlt

First off.... Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon

It is stressful to know there's something "off" with your child, but they're so young and can't communicate with you.

You sound a little similar to my DS. He's 4 now and doing soooo amazing! Took a lot of time, therapy and patience. I read the book "raising a sensory smart child" which was really good.
DS is just diagnosed with developmental delays. He had speech delay (expressive and receptive delays) along with sensory issues. He never said "mommy" or "daddy" for the longest time. I felt the same way when parents would sort of complain about how their 1 1/2 year old or 2 year old would call them all day long. I never knew what that was like. If DS got hurt he just screamed and never could tell me what happened. He pretty much ate baby food till a little after 2 then he had the smallest food choices after. I feel like just after 4 things started to click. He still has trouble telling me what happened when he got hurt. Sometimes my 2 yr old DS has to tell me what happened if I was in the other room.
Just keep doing what you're doing. Get the therapies, work with DS and be VERY proactive. The more you speak up the more help your DS will get. He's in preK now is the special ed program. I talk to his teachers all the time and his case manager. At one time I was going to a neurologist bc I thought something was wrong. I never did and as I said he's doing amazing now. If I explain things to him he understands more where as before he'd scream and close anyone out. He still gets anxiety when it comes to sounds, textures, etc. Now he can talk it through and do better.
FM if you have any questions. My DS was also born C section. He was over a week late and went to the hospital to get induced, but when I started having contractions at the hospital before they did anything his HR dropped and he was a crash c.
Chat Icon Chat Icon

Erica...thank you very very much! yes what I would give for a mama.....dada....thanks for understanding.
I will look into that book you suggested as well...we are having our next meeting with the nassaue county person in charge of our case mid January. and in meantime waiting for the OT eval too. I am going to be doing a lot of reading online and here so I can be veryyy proactive and assertive to getting ds any help he needs. I am very happy to hear your son is thriving now!:)

Posted 12/26/13 9:29 PM
 

Alli06
Baby #3 coming this June

Member since 8/05

6721 total posts

Name:
A

Re: wow my first post on this board...would love to talk to those btdt

You are doing everything you can for your child. It's so hard having a child that is different from his peers, but getting him the services early ( which you are) is the best thing you can do for him.
The whole thing is not easy. My DS is 4.5 and I remember watching other kids his age or hearing friends stories and thinking " my child doesn't do that". I even had him evaluated at 2 and he didn't qualify for anything but I knew something was off. I have known since he was 6 months.
His second evaluation at 4 got him services. He goes to a alternative pre-school and receives OT/PT. He is making big improvements which is wonderful to see. He still has his moments, sometimes he is great and other times I may get sad or embarrased when he shows some of his quirky behavior.
I wish you the best and remember your a great mom!!

Posted 12/27/13 12:55 PM
 

aliwnec10
mom of 3 boys

Member since 4/06

11426 total posts

Name:
Ali

Re: wow my first post on this board...would love to talk to those btdt

My son was never a cuddler like my 1st was. He just now at 23 months starting giving hugs. He doesn't give kisses either yet. When you pick him up, he pushes you away and wants to get down. For a long time it made me sad because I felt like my own kid didn't like me.

He also never sat still. Thank god my 1st son is 5 1/2 and is well behaved because when I had to take them to parties by myself... I'd be all over the place chasing after my 2nd son. People would make comments to me all the time about how he doesn't stop moving. Even now at 23 months he's very active. He has slowed down a tiny bit and just started to really play with toys... trains (without throwing them) and will watch mickey mouse. He won't really sit for movies, do puzzles, or anything else yet. SO different from my 1st.

He also doesn't talk. He's in speech twice a week through our insurance. We had him evaluated by EI at 19 months and he missed it by 7 points. But he definitely need it because he'd get so frustrated all the time. I'll be honest... I didn't like him very much for a few months. It was just very hard with him. He'd smack me, pull my hair, throw things and have escalated tantrums. I truly feel that he was so terrible because he was so frustrated that he couldn't talk.

My son had tubes in his ears at 15 months and couldn't hear in the 1 ear until then due to fluid being there.

have you had your sons hearing tested? like by an ENT doctor in the hearing booth?

Message edited 12/27/2013 8:33:01 PM.

Posted 12/27/13 8:30 PM
 

Mmm777
LIF Infant

Member since 2/13

330 total posts

Name:

wow my first post on this board...would love to talk to those btdt

Hi
Personally I know how you feel
After a marriage of 10 years , we conceived our first child by IUI with clomid
He too was born at 41 weeks, no labour, induction for 6 hours , failed , then csection , they commented he had meconium stained Aminiotic fluid in the uterus , but his APGARs were good
Since he was born, we are lucky if we sleep more than 2 hours without him waking ... this was until he was 3 years old
He would start whimpering and waking and full blown crying , we have to sing , hold him in our laps , he would not sleep alone , and we have to sleep with him
He did not say any words until age 2 , still non verbal , would play, but doesn't watch TV
When u take him to the playground, all the other children would be playing in the slides, he will find a slope and run over it , or try to catch other kids, and we had to keep running after him , this has decreased somewhat , but still there most days
We started early intervention at age 2 , with some speech and teacher, it did not work, at 2.5 years he had a pscyh eval and was diagnosed with moderate autism
He got services from Nassau , pretty good EI Lead, he learnt to point , still non verbal, but would do some puzzles etc

Another word about EI
Not all teachers are good '
I am not from this country and find it difficult to stand up , but I will tell u a few examples
My EI lead was excellent, on time, spent the required hours , genuinely cared about my son, was great , he did the best with her
Two of the others were really bad, one would spend an hour for the 90 minutes class, came late , took calls from home, was just plain lazy
The other was on time, but she would finish early , was too loud, my son did not get along at all with her
My speech therapist spent only 30 min for her 45 min class, and was out in 30..
MY EI lead told me I should have complained a lot early and not waited 4 months ..
I did speak up , but late,
I did not know I could have asked for a change of his teachers
So this is another information for people like me, new and without any friends to know what should be done

So we transitioned from EI to School
We asked for 6 :1 as we felt that was best, schools insisted he will only get 8:1:3
Well now 4 months later, I regret that I did not place him in the 6:1 as suggested by my team lead
My son is so stubborn he refuses to eat anything in school except maybe a few slices of orange or apple . He will eat only 1 type of food that needs to be hot and he wants us to feed him that , so he remains hungry the whole day ..
He has shut himself down in school, in home he will play point to banana , orange, pacifier etc if he wants them , plays with toys , jumps , is a happy child ... in school he is apathic , shows no interest in anything, cries everyday in the morning
Some days I start to cry when I think of him, I cant stop , I don't know what to do...
I will transition him to a 6:1 next year, maybe move from Nassau into Westchester
Don't go with the general hype regarding schools, I did and I regret it a lot
So we had a meeting in our school district and the social worker told my husband that maybe he is better off in a 6; 1 but she did not say anything to us before in the past 4 months .. I am so unhappy with them for not speaking before.. I don't know if I should be changing him now and then again in next June or Sept , or just change for the next year

As a parent of one special needs child , I will tell u this, no one knows how difficult our lives our except another parent with a special needs child. My parents and inlaws certainly don't .

Defenitely get his ears checked like the prior poster said , my sons was fine
I wish u the best , if u need any specific details u can FM me

Posted 1/2/14 11:07 AM
 

prunepie
LIF Adult

Member since 7/06

4357 total posts

Name:
jennifer

Re: wow my first post on this board...would love to talk to those btdt

I will update more next week after we have a plan implemented. we still are waiting for the ot eval....but he is definitely getting speech intervention. everyones words and experiences have meant a lot to me....I will be on here a lot more I am sure.........hugs to all@

Posted 1/9/14 3:44 PM
 

HoneymoonBaby
LIF Adolescent

Member since 11/11

635 total posts

Name:
CJ

wow my first post on this board...would love to talk to those btdt

My DD is a few weeks older than your DS (4/25/12) & we are going through EI right now because she is toe walking. The special Ed teacher that came said that she is noticing a lot of sensory seeking behaviors, as DD is always on the move. The OT is coming next week. I came on this board to search for sensory seeking threads. I was crying this morning at work over the eval with DD, Even though I am a special Ed
teacher myself! Just wanted to say I understand a lot of what you feel!!

Message edited 1/10/2014 8:30:59 PM.

Posted 1/10/14 8:30 PM
 
 

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