Waiting for answers and feeling really alone

Denise - posted on 06/26/2012 ( 32 moms have responded )

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Ok, I will try to keep this as short as I can.. just every time I talk about this I get fired up and words spill out....

We have 2 beautiful girls who are only 13 monthes apart.. Our eldest was pretty much a planned pregnancy and we did EVERYTHING by the book.. her delivery was brutal but she came out a beautiful, HEALTHY girl and up until around the 9 monthes mark she was right "on track". We found out we were pregnant sometime around there, while I was on treatment for cancer. At that point we were late in the pregnancy and everyone fretted about the new baby and what would happen there... I feel so much guilt like I took my eye off our eldest for a second and missed something so crucial...

Our youngest was born totally healthy and continues to show signs of normal development, but our eldest does not talk.. she babbles and "uses jargon" she hand flaps, she runs wild and toe walks and ultimately has a hard time being engaged... She is an amazing child though.. she loves animals and seems at ease in nature, which is quite the stark contrast to the little gril throwing tantrums and smashing herself off of furniture at the drop of a dime... no one knows because she cannot communicate.

We have been working with an early intervention program since she was about 18 monthes old... we had to fight tooth and nail to get the referral. She has made STRIDES... we can engage her for 5 minutes at a time a few times a day, she has started showing us to things when she wants them.. the "jargon" as they call it has continued and transformed... she has even had a few words that stuck... but since they were all very random things they don't get used often (her first word was "sheep")

We recently went to a diagnsotic play group and I am so frustrated.. we met with an entire panel of "experts" who assessed her ( as much as they can in a room with 5 other kids and all the parents) and they just kept telling us how awesome we were... We are now on the waiting list for an intensive one on one diagnostic in the fall...

The thing about it is, any of my friends who DO have kids are getting out and enjoying all those "normal" milestones... it makes it hard to be around them and here them talk about "Oh Billy used his first sentence today" etc..... I am at a loss as to what next steps I can pursue for her outside of the program and feeling like I am treading water most days wishing I knew people who were in similar situations... or where to look for tips on how to relate to her and engage her

It is SO frustrating she has moments when she is the same bright, cheery little girl and she is THERE and then POOF in another instant she is gone...It breaks my heart.

MOST HELPFUL POSTS

Denise - posted on 07/02/2012

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@ Laura, no need to apologize you don't seem like you're trying to be harsh I can relate... Its not so much that I am frustrated with the EI people as I don't entirely know what to expect from this process, can feel a bit lost about it all. We had to FIGHT with our ped. doctor though! We weren't supposed to see him until her 18 month check up but we expressed our concerns about her not talking and some of the behavioural stuff that had come up at her 1 yr. and he waved us off.. THEN over Xmas, around 15 month mark things did a REALLY dramatic backslide and the one day she started wailing like a banshee and just wouldn't be comforted.... so we took her to our GP.. she was in so much just pain and writhing that they couldn't even get a good look but the GP at that point told us she thought we should take her BACK to the ped. and ask for more in depth advice with regard to the speech etc... they also ran tests and figured out the poor baby had a bladder infection so NO WONDER she was so upset.... Our doc gave us the cold shoulder at the appointment when he set up her hearing tests, her speech pathologist and gave us the early intervention folks information but has since seemed to calm down?

As far as knowing she was having probs though.... its weird, some of the more "obvious" stuff DIDN'T come until around that 15 month mark, thats when she started hand flapping, rearranging toys, staring into space etc.... but around 9 monthes she went from being this just relaxed, contented little girl who loved exploring to yeah... tantrums (full throttle, stiff as a baord, throwing herself around), she smiled less but we were at a loss.. we started looking for playgroups thinking maybe she needed more interaction with kids.. and it was like pulling teeth trying to find one in our area! We also figured it was a lack of sleep... as I was saying in my reply to Sharlene we had a HARD time with the sleep thing... weird because at 2 1/2 monthes she started sleeping through the night... then around 4-5 monthes we visited his relatives and they convinced us to have a "date night" and they would watch her... she woke when we were out and wouldn't calm down (duh, strange people, where's Mom and Dad, right?) and so they gave her a soother which we had managed to avoid until that point... We were so focused on trying to ween the soother we didn't realize it was a BIGGER sleep issue til around that 9 monthes mark... when we had gone through three or four rounds of successfully getting her to sleep even most of the night without upset only to have the behaviour almost reverse itself... I won't go into a lot of detail because it was seriously a TRYING time but suffice to say 9 monthes is when we starting noticing a gap in behaviour.. even things like her babbling changed, some days she wouldn't peep at all...

We have our visit with her EI worker tomorrow, where we will find out more about the diagnostic and hopefully have a date ironed out...

As for being her rock I am definitely trying but sometimes its hard to be SOLID when you don't KNOW, you know? Even the EI folks have said that while she's got these "red flags" as they call them, they are inconsistent... they actually told us SHE is "consistently inconsistent" and so its hard to really do too much in depth anything on my own without having a clear direction where to go and unfortunately my gut isn't leaning one way or the other...

Its frustrating when she has these moments... you see it in her eyes she is THERE and angaged and there's this glimmer and then all it takes is a second and they get glazey, and its like the world is shut out...

As for the Vit D stuff i will definitely do more reading though as I am learning information is power... especially while we wait to even get IN for a diagnosis that might not even come (they will NOT give us a diagnosis or prognosis if even one team member is not in agreement so October could add up to being frustrated-- I think that where my frustration is... wanting ANSWERS so we can move ahead and forge the BEST path for her.. )

I think though that even through talking to some of the ladies on here and hearing their stories and some of the things they have or are trying helps... it gives me a little bit of peace of mind knowing there are other options out there and having some idea of the direction to look.

I am getting all wordy on you though but wanted to say Thank You for the response, and for the words of advice, encouragement and just your story... it helps so much.

Sharlene - posted on 07/02/2012

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@Laura and Hubby. thanks guys for that info. that would be great if it does work,please stay in contact with me and keep me posted about the outcome of your progcess. take care both of you's

Laura_ruddy - posted on 07/02/2012

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@ sharlene

we are waiting on appointments with EI.. etc ... should hopefully hear from them shortly

i am going to let my husband tell you about VIT D ...

Hi Sharlene , I stumbled across an article on the Internet last Thursday evening regarding Vitamin D and Autism. The reason for this was because our son has pronation ( in my mind weak ankles ) and I wanted to see if this was common. The article basically linked autism to Rickets disease ( which I had heard my Mother talk about in the past ). Rickets disease was very common in the Industrial Revolution ( late 1800's / early 1900's ). It was prominent in children who were made work in factorys all day long. Basically they were starved of sunlight. Anyway some old articles on rickets discussed not only the well known weak bones but also a change in the childrens personality ( ie aloofness / no eye contact and slow in the mind ) Rickets was treated with Vit D. Anyway , fast forward to the late 70's / early 80's and the sudden rise in Autism. According to the study I have been reading this coincided with the medical world telling us of the dangers of the suns rays. Parents were now caking their children in sunblock , making them were big hats and not allowing them out when the sun was strongest.
Anyway , this led me to Dr. John Carnell and his research. If you google him and look at his posts and MORE importantly the responses from parents u will see why we are so passionate about the possibilities of Vit D. One parent described her autistic boy and non verbal , Zero eye contact etc.... She said that she had noticed that there was a marked improvement in his alertness and eye contact during the summer but then he regressed during the winter ( sunshine Vit D ). She then began filling him with VIT D supplements ( way above the recommended daily dosage ) and within 3 - 4 months he began to point , talk etc. He is now in mainstream school and has friends.

I will finish by saying we have only began Vit D so I cannot say one way or the other. What I will say is that giving lots of Vit D to oury child will not be harmful so if it doesn't work u have not done any damage. However if it does make a change , even a small one isn't it worth a go?????
we live Ireland we dont have much sun even now its summer months and has rained for weeks
there fore we stay in ... (p)

a person who i spoke to her friend son is 8 and has autism she put him on the vit d too and noticed a big difference with him when she is away on vacation in spain in the sun but when comes home he regressing so she started the vit d his autism only cam when he was 3yrs old away another child that was not out much now he is a happy child like any other child of his age and in school with friends .. she had gone through all EI and that helped in the speech and swallowing area but she is a vit d person ;-0 (L) i just found this out from my aunt today

again we are sharing what we have found out and we are NOT selling any quick cures or fixes this is for our child and what we feel in our heart at this point is right for us
laura & hubby

Laura_ruddy - posted on 07/02/2012

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@ Denise. re-read your post and you reply's

if you feel that your child has a little benefit form the EI etc ... speak up to people. you are her voice , you are her mum, your her rock, you are her power,

as for friends etc ,i know some mothers talk about there child in same ages group and what they have done .i am same here 3 of my friends had babies roughly few months before and after i had my son i hear it to and can put you on a bit of a downer ....

but i personally knew my child was having problems before he had his 1st birthday. i argued with myself in my head for about 3 months before putting my foot down with doctors etc ... i take no BS from anyone any more.. yes i can sound nasty or harsh etc .but after all these people are there to teach-guide- us and our child with the tools we need to help them if you feel low or not happy with her progress speak to them ..

as i said i have found out about my son 5 days ago... and i am putting my action in to place now i cant sit and wait for other people and long waiting list with the health systems to help with my child so i am trusting in my mammy's instinct .until they advise me otherwise .

go with your gut feelings.

sorry if i sound mean etc .. i am not trying to come across like that ....
laura

Laura_ruddy - posted on 07/02/2012

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http://www.vitamindcouncil.org/

this is the main website ,, if you please read and see what you think i know each parent and family can have different views etc ..as i try not to read to much internet things i rather talk to people that are in same position as my son

thank you

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Jessica - posted on 07/05/2012

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My 3 year old is exactly the same way. She was diagnosed with Aspergers. She is by all means completely normal, but in social situations, she melts down. She also turns the switch on and off. It is hard and it does drain you. We don't get invited to much because people just don't understand. You are not alone. My daughter developmental pediatrician said that some children even show fewer sign and symptoms as they age. It sounds like your little girl is going to be ok. Just keep encouraging her and everything will be ok.

Laura_ruddy - posted on 07/04/2012

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@denise

that is great with all i read above... i am happy for you. today was a good day too ..3days no had flapping. 3days feeding himself ;-) ... i read that kids with autism like routine my son was in one but from reading and learning i change my mind now with that ,, feed him when i feel like it (lol) and change rooms which i feed etc .. not to let him get to routine so where he gets used to feeding in different areas and by different ppl. etc ... but thats my personal choice .. have to say he is not fussy about it ,,
today threw is 1st tantrum over his juice bottle being empty (he drank it) ,, lol .. but i had to let the voice tone change at him to say thats its wrong .. i know things like this are part and parcel but he is 20 months and i think the terrible 2's will come along soon OH BOY !!!
from me to you and other gals here stay positive ... and hugs to you all ... and our children ;-)
again keep me posted with updates etc ;-)

Denise - posted on 07/03/2012

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@ Laura that is amazing... it seems like leaps and bounds for you guys. As far as tv goes we have always kept it to a minimum ... using it only when she was inconsolably upset and NOTHING else was working but I have definitely noticed a change in her behaviours between the days when she has had it (in her mood etc directly afterward) and when she has not... Thank you so much for all of your advice and the postings about this doctor though....

As for being messy haha that is like us and Ella... she is just NOT into utensils and when we had to go to the playgroup diagnosis (so you meet with all the specialists) the OT had noted that she doesn't like to be fed with utensils and hasn't shown a lot of interest in using them herself... and was giving us all manner of suggestions.... but really I am happy she is eating AT ALL and if I have to work around finger foods as far as meal planning goes, so be it.. occasionally it cannot be helped so for the most part we strip Ella down to her diaper for supper and let her go... manners can be refined later... and if not well at least she is eating something :P

I am really happy to hear the positive stuff for you though, seriously!

Denise - posted on 07/03/2012

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Ok a general note: Ella had her appointment with her EI worker Ruth today it went SO WELL, I couldn't get over it (and neither could Ruth).

She slept in again this morning, which she does EVERY time Ruth has a morning visit haha. When she got up she was chipper, she seemed very rested and was engaged with me right away having a "conversation" -- she babbles, she does have a handful or so of words but they are random and don't come up a lot in every day conversation, so for the most part she is at the "jargon" stage as they call it. We are supposed to continue mimicking her noises as it helps her feel we are paying attention and that it matters and the hope is she will eventually feel encouraged to reciprocate and more words might come? Either way I like babbling with her because her eyes come alive and it feels natural.. so this morning she was feeling chatty and so we chatted away. She didn't even try to kick her sister off the edge of the couch when Amelia came to visit and see what was going on...

The morning progressed typically from there, she had her FIRSt breakfast.. she was really upset to see Daddy off to work today but she bounced back and played a little bit of chase, then rearranged some shape blocks and was very insistent on the little mermaid book being read 8 or 9 times. During this I got both girls dressed and everything ready for the visit.

When Ruth came Ella was babbling and playing with the shapes... she immediately zipped off to the kitchen which is fairly typical. Ruth had some new toys and things she had picked up from the dollar store in her bag today so she brought those out while Amelia mauled her ( Amelia is the polar opposite of Ella in that she wants to attention of everyone in the room at all times haha)

First were those party horns... you blow and the paper curl sticks out?? Of course this was less effective than Ruth was hoping because she thought they made noise... so Ella being in a seperate room put a damper on it.. but Ella came back a few minutes in and saw the party horn... she was very intrigued by it... Ruth gave her her very own and she even attempted to blow in it herself... then zip.. off to the kitchen...party horn in hand..

Then came the jiggly character that lit up and flashed different coloured lights when you shook it... Immediately that was snatched out of Ruth's hand and kidnapped to the kitchen as well...

but then she started coming back in... so Ruth brought out a ball which lit up and flashed when you drop it... and Ella actually was ok with trading the jiggly guy for that... which is new.. she is little hoarder our Ella and likes to build herself nests with whatever toys she happens to be fond of that day..

she started coming back more regularly. Ruth's initial hope was that she would try to indicate she wanted help with making the toys light up but Ella is a little tinker and so not surprisingly she figured them both out and could do that for herself... but she kept coming back and babbling... Ruth brought out stickers and stuck them to her face... Ella actually was comfortable enough that she approached her and took them off... kidnapped the sheet of sticks at one point but brought them back, then when I put stickers on my face she noticed and crossed the room, took them off and tried to put them on her own face which was HUGE... she has pretty much NEVER shown an interest in mimicking.. except when she absolutely cannot figure something out for herself and then as soon as you have shown her... she goes off and plays by herself...

She was making a noise that sounded a lot like "get out" and waving a toy.. Ruth copied her and she got a huge kick out of that.. she laughed which is SO rare I wish I had the video camera handy...and then she tried to blow her own nose because I have been down with a cold for the last few days so she has seen me do it a bunch..

I couldn't get over how easily she engaged today and even initiated things between herself and me, and even more surprisingly herself and Ruth...

After Ruth left we had errands and so I brought out the stroller and she proceeded to climb herself in and shut the front pice over all by herself... she kicked her feet and noticed her shoes weren't on and waited for me to help her with those...

The catch 22 came later when she fell asleep for a late nap.... when she woke up she was REALLY upset and it took a bit to calm her down, her mood was much less jovial and she didn't seem to know if she wanted to go off and do her own thing or be cuddled...(but when we cuddled her she would be ok for a minute and then squirm to get away.. then freak out again)

The real downer was hse had a rough time in the bath and cried a bunch when we put her to bed... it always makes me feel so helpless because we never know WHY she gets upset like that at bed time and we can't do a lot because it offsets the routine and then disrupts her sleep schedule.. delicate balance...

I just wanted to share the positive stuff though because it is so rare that she is so relaxed and ok in a social setting... and these were pretty big leaps so even if tomorrow she doesn't do ANYTHING like it... there is something to be said in knowing she has that capacity... and to just keep working with the strategies we have, looking for others and ultimately just listening to Ella as best we can.

Laura_ruddy - posted on 07/03/2012

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Dear Dr Cannell: Autism update
Posted on July 3, 2012 by John Cannell, MD
Dear Dr. Cannell,

I spoke with you awhile back regarding my autistic son’s progress (age 5). I would just like to update you though that the school district recently closed his IEP and he no longer qualifies for any special education or related services, which is truly a miracle.

He does still have deficits in fine motor skills and we have therapists still working with him in this area, and occasionally struggles with anxiety and sensory issues. We had his 25(OH)D level checked last week and it was at 131 ng/ml, which is a bit high. I give him 5,000 IU/day, his blood calcium is normal. I would like to get it down a bit and be able to sustain that.


He weighs about 45 pounds and is 43 inches tall, so he is quite skinny, and the levels increase rapidly when we give him more IU’s, and drop dramatically when we cut back. I have found it very difficult to sustain the 25 (OH) D at any given level. I would greatly appreciate your guidance.

I would like to thank you again and G-d bless you and all the work that you do to help these children. I never thought I would live to see the day when his IEP was closed.

Sincerely,

Mary

Dear Mary:

I’m so glad they closed his IEP but 131 is too high. Stop all vitamin D for three weeks. After three weeks, recheck his level and when it is below 70 ng/ml, start him on 2 capsules of D-Plus a day for the extra magnesium and zinc it contains, or give him 3,000 IU/day of Ddrops and purchase a magnesium/Zn supplement and give his at least 200 mg of extra magnesium per day. Trader Joe’s makes a good CA/Mg/Zn preparation; give him two per day. Then check his 25(OH)D in two months. I suspect the additional magnesium will help his anxiety and, due to its complicated relationship with vitamin D, may help stabilize his 25(OH)D levels.

Also, remember that some of the fluctuation you see in his 25(OH)D levels is probably due to the laboratory method used to determine them. What method is used? It will say on the lab slip.

Again, that’s great news; no more need for special education.

John Cannell, MD



****WERE TALKING to this doctor right now as i share this ****************** .......

Laura_ruddy - posted on 07/03/2012

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well thank you... to not going in to much now ,,as this is your thread ,, but today when i woke up i really wanted to cry,, felt so low ,,,

but i had a cry like 5 mins and got over myself ;-)

yes knowledge is power ,, thats my new phrase ..

my son has eaten his breakie this morning for 1st in his life on his own .. ok he is very messy but i really dont care,,,, at that ,, his is happy .. so why was i flipping crying.

we do what we feel is right for our children ... not one person in this world know everything even the doctors !!!!

please let me know how you get on at your appointment ,,

please cut out tv for your kids both of them .. with in days you will see a difference if you have not done this already,,,

laura

Denise - posted on 07/02/2012

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Wow lots of action in here! haha Ok.. still digesting a bit of this but will try and reply coherently:

@Sharlene-- thanks for being so supportive, seriously it helps hearing from other Moms! Your days sound tiring (I think thats the same for everyone going through developmental delays with their kids though, am I right?) Our days go: 5:30 or so I get up with Amelia, our youngest and usually feed her, chill out and let both of us wake up. Ella gets up anywhere from 6- 7:00 am depending on a lot of factors including how much she was up at night. It has gotten BETTER we went through a lot of hell trying to get her to be ok sleeping at night, we assumed it was because his folks introduced the soother when we visited them for xmas after Ella was born, around 4 months but now are learning this could all be part of her delays. She usually plays sporadically throughout the night but it has lessened from a place where it was around 3-4 HOURS in the 12 hour window she'd be in her room, with some fussing periods when she would want OUT of bed, be lonely etc... meaning she was sleeping MAYBE 6 hours a night if we were lucky and then she REFUSED naps... she has only recently taken to those, maybe in the last week or two but a big difference in our days now... When she gets up she likes a bottle right away, and time to unwind and adjust... Breakfast is in stages.. usually she gets 3/4 of a buckwheat waffle in pieces ( she won't do utensils or sit at a regular spot to eat breakfast) and then a bit later its a whole egg, scrambled and some fruit..... Once both girls have eaten we get dressed and packed for the day these days-- between Ella's appointments with doctors, My appointments with doctors and just trying to keep both girls engaged and happy we don't spend a great deal of time at home.. Even when we DON'T have running around to do I end up taking them for a minimum 1 hour walk so Amelia gets in her am nap and Ella gets to see the sights. She loves being outdoors and does better when she has had a chance to "explore" ...I wish we could graduate her to WALKING outdoors because she is so hands on but she is runner and especially when its just me its a safety issue you know? We ALWAYS come home for lunch and then lately its naptime about 50% of the time, she goes down for a 30 minute to 90 minute nap depending... When both of them are up we play A LOT.. the focus they want us taking is to engage her AS MUCH as we can and it can be really difficult, she often goes up to her room by herself or hoardes her toys away with her in a corner... OR on the flip side she makes an attempt to get me to engage in an activity, say reading a book with her and then refuses to stick around when her sister inevitably comes over wanting to be involved. Night time is VERY set in stone because of the sleep issues.. dinner is at 5:30 and then she goes for her bath at 6 and is in her room for 6:30 (she gets rocking, is offered a bottle which she rarely takes these days and some singing, then she usually has herself a aprty in there... it kind of makes me sad that she has such a good time all by her lonesome, just wish I could tap into that you know?)

Obviously once a week at the moment we have our intervention counsellor who comes to our house for between 1-2 hours.... I totally know what you're saying about the zero signs of a dirty bum though haha.. she does tend to go off and squat when she is having a BM, but dirty diapers don't tend to irritate her the way they say to watch for when you're talking potty training.

She had a good weekend this weekend though-- we took her to the zoo and while MOST of it was a bust she went WILD in the petting zoo and really reaffirmed for us that she needs the hands on approach and so we are going to try and focus more on that.... She tried feeding her dolly also which we made a HUGE fuss over but haven't seen more of... The early intervention folks have all seemed put off that she hasn't tried initiating any pretend play... so we shall see?

Sharlene - posted on 07/02/2012

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@ Laura. You are completly right. and Denise. she not having ago at you hun. These spcialist's and doctors dont have a clue what us parents go through with a child/ren with special needs and if you have to push and get in their faces do it course like Laura said we are their voices .

Sharlene - posted on 07/02/2012

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@Laura, I also kept a daily diary with my eldest son james and his behavior when he was much younger. Has the speech suggest a feeding clinic if hes having choking attacks my daughter kara has a feeding tube course she can't swallow at all and chokes and goes completly white. and even with the feeding tube she still seems to vomit or chokes. Try to get early interevention and that should help with the process and help you and hubby and with the Vitamin D study whats involve in that study. I have'nt heard of it lol

Laura_ruddy - posted on 07/02/2012

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again sorry .. i know we will need alot of work in the area of speech therapy and with his swallowing problems ..... i am not thinking the vit d will fix that ...

;-0

Laura_ruddy - posted on 07/02/2012

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yea sharlene

1. hand flapping
2. no eye contact
3 no speech only mama-dada-nana- but would not call me mama- so on. these are just words and only he repeats them
4. loves spinning toys and anything he can make spin
5.he can chew food even though he has all teeth. (we had throat x-rays done all fine)
6. sticks to places and people he knows and wont accept new places or people
7. is sociable again to people he knows . he will select who he wants to go to
8. you can NOT console him when he hurts him self in any manner ,, "don't hold me" type thing
9. not such a great sleeper "from being such a great sleeper form when he was 2wks old" slept all night only bad teething kept him up but very rare
10. no pointing ever - or hand gestures -
11. wont answer to his name
we dont know what "name" or stage of autism he has until we go the EI center ... as all PDD/CDD/SID/ADD/ADHA/ (to name a few) are all forms of autism



this is what we have done so far for him

1. CUT OUT ALL TV .. it has to go. they cant understand that TV is fiction and we are reality
2. we have done the VIT D ... ( i can find the post from this DR we are speaking to)
3. took away all toys that spin and that he can make spin. cars - balls etc .
4. i started to speak slower than what i normally would . both me and husband "have to speak to him with same words"


today we had NO hand flapping NONE
today he looked at me twice and poked my eye like he was pressing a button (sore lol)
today he walked to me with hands in air to lift him he looked at my stomach rather than looking at the floor
today i covered my face with my hands like peep-a-boo but did not talk or make any noise he walked by me 3 times , on the fourth time he came to me took my hands down from my face and kissed me.
today he tired cake and some fruit ;;; he ate some cake small bit not much ...
so in my world with him today was a great day ...

he is on 4000ui of VIT D now 3 days and no TV .. it can take 6-8wks of VIT D to take major effects . we are currently doing this while waiting on all appointments with all DR.

no harm in trying the VIT D will not hurt your child in any way

if your child is on a VIT A for any reason the VIT D wont have that same effect if the VIT A is a higher dose

it will make bones-teeth-muscles -immune systems -hair-nails-sight- and many more STRONGER

i have started a daily vid diary and written one with him..

i am hoping that tomorrow can bring the same with him . or a little further ;-0

Laura_ruddy - posted on 07/02/2012

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hi.

i am currently going though this with my 20 month old .. i have done alot of reading in 5 day from when he has been diagonsed with autism

both me and my husband are working in the vitiaim D programme

4days into this eye contact today ,,, and NO hand flapping ,,,


if you would like to know more or ask me please reply .... i am not here selling a idea of a cure or quick fix. its from a mother to my son ..any and all advise welcome to

Sharlene - posted on 07/02/2012

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@ Denise ,If it works then use it. Whats your day like with her. I know with kara she up at 6am every morning does'nt cry give her a tube feed and throughout the day she has always being a well settled baby not whinny or really ever cryed to be honest very content then she's up and about pushing along on her bottom to get around and throughout the day we do theraphy work that her speech ,OT, physio have planned daily. She does'nt give me any signs of a dirty nappy or what so Im constantly smelling her bottom lol. then she goes to bed at 5;30 and its feels like along day but its worth it. thanks for letting me have this little vent. I am going to try with her what you suggested with the photo album and pics.Keep in contact with me I will love to hear if Ella is doing anything new . take care

Denise - posted on 07/01/2012

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@Sharlene, I am not sure whether she understands necessarily BUT she does definitely seem to be familiar with them and have favourites? We did one with different foods she eats through the day and then things we see on walks, and the house etc... Our intervention counsellor suggested it for us :)

Sharlene - posted on 06/29/2012

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@denise, that's a great idea, the mini album, Does she understand the pics. I should try that with kara. thanks

Denise - posted on 06/28/2012

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fingers crossed Sharlene! We had pretty much given up on the signing but I was thinking of introducing it again... hadn't thought of the cards though-- we made her "books" by grabbing just some cheapy dollar store mini albums and stuffing them full of pictures of things she sees everyday and she LOVES flipping through them so maybe if I try adding a label it could help? Ultimately it generally can't hurt..right?

Same goes for you if ever you want to message me!

Denise - posted on 06/28/2012

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Hi Danielle,

We are in Edmonton

Thank you so much for your reply... I try to keep a journal of all the positives and thorugh the program we have to make what they call "interest webs" to try and find things which keep her attention naturally and then build on activities from there. This is the frustrating thing, we keep getting praise from the "experts" because we can pretty much make a new web every visit.. We take all of their advice and try to implement all of the steps and it is frustrating when they want to praise you for it but kind of look down their noses for wanting to go outside of the box...

For a time they wanted us to try signing but she just got frustrated (mostly because they wanted to withhold things, only for a few seconds, to be sure she was WATCHING the sign and my child comes from an Irish-Finnish background and thus has a TEMPER) and then eventually they told us to cut that out entirely and try literally talking to her like a caveman, one word sentences.

It has helped, but still there are many times, and my partner and I get into arguments about this, that I think she "gets" more than everyone is giving her credit for... I don't know yet how to be a really effective advocate for her I think.... am just lost trying to muddle through this diagnostic stage and let her be a kid at the same time?

The other thing I didn't mention is that she doesn't like her little sister... I know that is awful to say but she showed no interest in the baby when she came home from hospital and then used to get upset if Amelia would even chirp or coo.... Now she has calmed about the nosies since they are a part of her day to day... but will NOT engage in activities whatsoever if her sister is anywhere nearby....

I will keep the motto in mind... she definitely has days where I need to remind myself.. this is not ALL the time....

Sharlene - posted on 06/28/2012

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Hey denise, Do you sign to her or use sight cards, I do abit of both with kara, And yes some days she wont eat at all where she will vomit up her fluids from her feeding tue, Im seeing speech and hr specilaist today and asking them can we go to see a deveolpmental specialist for a diagnoisis, fingers cross. If you want to ever chat message me anytime.

Denise - posted on 06/28/2012

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Hi Sharlene,

We are still waiting for them to even start into diagnosis but yes, they keep throwing around the word "autism" ... Shedoesn't have a lot of words, and uses them infrequently... and really only started those around 18 monthes, like you said the specilaists simply tell us she is "really behind for her age" but the BIG issues they are seeing is her ability to engage with people and communicate. Feeding is ..different for us... she refuses to use utensils and so we had a long time ago given up trying to FORCE feed and embraced the finger foods, we still give her a utensil with her meals and she mostly plays with it and LATELY has been trying to use it... Mostly it is just that she is "independent" they say... she is quite happy to just meander off and amuse herself for hours.. and sometimes she stares off into space... she has a lot of the little "ticks" that they associate with autism and the others in those spectrums like the funny hand gestures and wanting to repeat things (but NOT what you want her to repeat haha I think that is the way with ALL kids?)

there are lots of things she is starting to be considered "behind" in and it is so frustrating because its stuff that isn't HER doing.. like potty training.. I keep telling everyone she is showing those physical signs and they all wave me off and say "she's not ready" ARG!! SHE isn't ready or YOU aren't ready? Thats what my head screams... I cannot even imagine what its like with a feeding tube.. I hear everyone's stories and wonder if I have it in me to be strong for her.. you know? not strong but STRONG but am really glad to know I'm not totally alone in my frustrations and mixed up feelings...

Danielle - posted on 06/27/2012

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On a side note, where in Alberta are you located?
My son was diagnosed through the Aspire program, as we are also in Alberta, Canada.

Danielle - posted on 06/27/2012

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My son is 3.5, and we received the diagnosis of Autism for him this year.

One of the hardest things that I faced for over the last couple years, is comparing my son to other normally developing children. I started to resent my son for not being normal, and then feel guilty for doing so, and then depressed about it all. It was a constant struggle to love my son when he just didn't "get it".. and what was worse was when other parents didn't "get it" either. I hated when they felt like they were judging him and comparing him as well.
I hated playgroups because he was my baby, and I felt like I couldn't help him like a mother should; by teaching him, comfort him, and stand up to the snobby disapproving parents. I realized that I didn't have the little boy that I fantasized about when I was pregnant, and I felt a new wave of disappointment.

In the end, I realized that I needed to be my sons advocate, and that he still has that adorable little boy inside him that I love desperately despite his flaws. He has an infectious laugh, and is very funny and charismatic when we are alone. I started to make mental notes to myself whenever I felt like my heart was going to burst with happiness (just with him being himself), and it helped combat the sadness and disappointment I felt.
I stopped comparing him to other children, and I would try to find positive things to encourage him to keep doing.. like sharing, or taking turns while around other children. I can never be the parent who sits off to the side texting while their children play.
He needs constant supervision and encouragement to help build his positive characteristics. I feel like this has helped a lot in the long run.. we've used a lot of "hand-over-hand" technique to help demonstrate things like sharing. To help with his vocabulary, and comprehension, we had started to learn sign language. That alone has helped increase his understanding exponentially.

I know how it feels to think that this is a stage your child will never get past. A motto I came across that has helped me on my tougher days is: "This is not forever. This is just right now."
It is true. Try not to keep the blinders on to long. Remember to take a deep breath and love your little girl for all the things that makes her unique.

I feel that I have learned a lot more from my sons delays that most parents take advantage of. I can marvel and enjoy every milestone that others take for granted. I have learnt to love unconditionally. I have learnt to be a stronger person, and to love harder than most parents will have to. I feel this has made me a better parent and person.

You are not alone in what you are feeling. Don't bottle it up. What you are feeling is normal. Make sure you have a good support system who you can trust, and are unbiased in your situation.

Keep your chin up, and best of luck to you.

Sharlene - posted on 06/26/2012

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Hey denise, I knw what you mean the specilaist look at you like what is this on lol. May I ask what delay does your daughter have or does it look like autism. We cant get kara diagnois yet but the specilaist are saying she showing 3 differnent delays and it really hard to pick up two delays are very strong but the 3rd have to wait. Not speech or OT and pshyio she is really behuide for her age and lioke I said non verbal she also has feeding issues which is seem to choke on swallowing so she has to be tube fed. but They keep reminding that it does take time but I just wish it was happening, lol. Like I said if you ever want to chat message time

Denise - posted on 06/26/2012

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Thanks for replying... We are in the early intervention program through Alberta Health Services and have seen strides though not sure if that is her own accord or the program or both and we are CONSTANTLY being reminded it is nowhere near where a 2 year old should be.. she turns two next month...

I know it is silly but sometimes the professionals seem to have an attitude of almost "masking" the issue... they talk sometimes like the end goal is just to make the child APPEAR normal.. what about their happiness?

Do you find your intervention therapy is working? We currently work with an intervention counselor who has been amazing but I am just wondering if I should be busting out of the box! I am contemplating looking into a part-time mommy's helper to be an extra set of hands so I can try taking her out more without needing her to be in the stroller the whole time ( she is a runner and sometimes is prone to the temper tantrums which involve stiffening straight up and throwing herself backwards)

Thanks for the reply though and the support... as much as we have been dealing with this for monthes now I am getting really freaked out about the idea of a diagnosis and the finality of it all...I will try looking for support groups in my area though!

Sharlene - posted on 06/26/2012

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I also have a 2 yr old daughter that has GDD, non verbal, hand flapping hydrocephalus brain damage feeding issues and the list goes on seroiusly. She is also in early interevention ot,speech Pyshio and other services, Have you tried a mums group for those with children with sapecial needs someone to talk to and probably release some tention.What early intervention is your daughter in and do you see it working. Do you also use sight cards or sign lanuage , Im in one and we meet up once week no kids and just chat. Dont blame yourself either these things just happen. Look if you ever want to chat message me anytime ,take care.

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