Feel so let down by the HSE – I have let my DD down

[Alison,]

Hi All,

God I feel awful about posting this as its probably a a mild problem but to me its everything.
Our dd is 2 yrs old and she was bron 4 weeks early, she ended up in NICU for 5 days as her lungs collasped and she spent a further 2 weeks in SCBU before we got to bring her home. She went home with a referral for Physio as she had very bad low tone.
We got a letter from the HSE when we got home saying that her appointment was 14 mths from when we got home , as you an imagine I went mad :bomb: :bomb: . We brought her privately which was not cheap and the lady we went too was a angel she fought our case with the hse and we got seen within 3 months.
Our DD is still attending Physio but in Jan 08 she was called for her 18 mth check and we were told she has a speech delay problem, we knew this but did not think it was as bad. Any cutting a long story short DD was referred to the HSE for assesment to see if she was eligible for the Enable Ireland Early Intervention Program. The lady from the HSE came asssed DD and sd yes she was goin to be put forward for Enable Ireland , this was end of Jan 08.
I had not heard anything back until i called the hse 2 weeks ago and I was told that the lady who had assessed dd was out sick and that our dd HAD NOT BEEN REFERED TO ENABLE IRELAND. Her file was not even looked at :bomb: :bomb: :bomb: :bomb: . I was so so so upset as DD is getting so fustrated over not being able to say what she wants and with us not understandg her is making it worse.
I got a call this am to say that Enable Ireland go the report from the HSE only yesterdat and that they would be out next week to get more info from us.
DD has to have a Physio,OT, Speech Assessement & Physcology (sp)Report done. and we were told that there was a 1 yr waiting list on the physology report so that could delay dd help with enable ireland.

I just feei I have let dd down so much as a mother, my stomach turns just looking at her and when she gets so upset and sinks her face into her hands and sobs when she cant say what she wants that just kills me to pieces.

Has anyone ever been let down let this. I KNOW THE HSE LET EVERYONE DOWN BUT WHEN IT COMES TO A CHILD YOU THINK THEY COP ON.

[scole1]

so sorry to hear what you are going through it’s terrible, but don’t put yourself down either you as a mother are doing everything that you possibly can in order to get her what help she needs, taylor went to a speech therapist and didn’t have to wait too long……. what about attending sign language….that may help with communication…..don’t be stressing out you’re the best mom your little girl could have…

[Gismo]

Alison your post is so heartbreaking. Please don’t be so hard on yourself. You didn’t let your child down the HSE did. Its unbelievable that this could happen.

[Alison,]

it is just getting worse I swear to god . we applied for Domcilliary Care allowance via HSE over a month ago for dd and I just rang there to see if it has been approved and the dr that asssessed dd is only writing her report today which has to be sent to another doc for her to review it , she said it will be 2-3 months before we know if she is approved for the allowance. DD was also refused a Medical Card and GP Card 😥 😥 😥

[Babs]

I am so sorry to read what you are going through. The sad fact in this country is if you can pay for it (and it can be considerable!) you get seen to first, otherwise like the rest of us you will wait way longer than is acceptable for a child and their development and then be seen by a service which is poorly funded and overstretched. All I can say to you is don’t give up, keep ringingand pushing for your child as he who shouts loudest is heard first (believe me, there is power in pestering them, I’ve seen it myself! ). Have you considered contacting a local TD? Sign language is a great idea for your daughter’s communication and frustration too. And give the Citizen’s Information Centre a call and see if you may be entitled to any financial assistance towards your daughter’s treatment. It is obvious what a dedicated and loving parent you are, my heart goes out to you. Best of luck!

[Anonymous]

Alison, this is not your fault at all. The system isn’t working and has let you down. You haven’t let your daughter down.

I agree with Babs, it’s sad but true that the loudest gets seen first so if I were you, I’d try being very nice but very firm and VERY persistent until someone does something. I took my dd to the Ballsgrove clinic about her speech and hearing not that long ago and they were great, could you not try and get them on your side too? I wouldn’t open a new file on it, just get more people pushing for you if you can.

With a loving, caring mom like you your dd will be fine. Just remember that it’s not your fault so don’t be apologetic. Oh, and get the names of everyone you speak to so you can keep hounding the same person until you get up to someone high enough to help. KUP.

[Taylor5]

Alison its heart breaking reading your post but as the other girls said you havent let your dd down its the system. I would agree with the local td or the health centre.
When I had ds at his 18 month check I wasnt happy with his speech and asked him to be seen by a therapist, it took about 6 months and the assesment went very well. I went on a 6 or 8 week course to develop my methods and see my faults and new methods to make ds speak. I did learn that I wasnt giving him time to answer and speaking for him.
I did do sign language with him from 10 months, I used BSL and learned it all from books and internet… by 12 months ds could sign words that another child of the same age couldnt speak, he would sign Plane, car, food/eat, drink, nappy, play, mammy, daddy, sleep, home, etc….
I would recommend signing as it rules out the childs frustration and makes understanding easier, you could just use a very few everyday basic words.

I know that the Drogheda area is much better and quicker for seeing kids, I know a girl from Dublin who has to Travel to Dundalk every week with her dd and another girl who travels to kells. Mad I know. Dont give up and send a load of emails, Mary Harney, The minister for children (dont know who it is now)
Good luck and dont give up hope, but those who scream the loudest get heard

[Alison,]

Not one person in the HSE , PHN OR DOC has ever mentioned sign language to help out our dd. I dont even know anywhere in meath that would do it.
All the HSE have mentioned to us is "has anyone mentioned cerbal palsey" like that is helping the situation. 🙁 🙁 🙁
dh and i are just sick to the stomach over it all.And the god dam waiting is just unreal.Is it expensive to do the courses on SL ?

its just breaking my heart to see her get so fustrated because she cant say the words and when she sinks her head into her hands and sobs , I end up crying and she gets more upset and she would just get up and hug me and hold my cheeks with her hand on each cheek and say "hi" and she would stare into my eyes its like she is looking deep into my heart and she knows its hurting.
I am just so upset its not right. 🙄 🙁

[kasia]

so sory to hear about your situation. don’t put yourself down because the system is failing you!!
as far as i know you can buy books on child sign lang and do it yourself.
as girls wrote it’s deffinitely wort trying.

and remember – at 2 your child doesn’t have to be a chatterbox. it’s normal that she get frustrated when she is not understood, try also ask her to show you what she wants.

to cheer you up a bit – einstain started to speak when he was about 7.

[scole1]

try simplysigning.ie the girl there lorna is fab her husband is deaf and she’s worked with hearing impaired for years and has started her own business in order to help others not only kids with communication difficulties but baby sign, i did it with my ds when he was a baby and again like taylor he could sign what he wanted it helped ease frustration you’ll get her number there and she may be able to advise etc…hth…

[Taylor5]

Alison I would recommend you go online or buy a book from Waterstones etc…
Scole did ISL in her course (Irish sign language) but I used the Brittish version as its more widely avaliable in books and internet sites. I total it cost me about 25euro to get set up compared to Scole who did a course for (i think) 150 euro.
I you dont know which one to choose ring the counsil for the deaf if there is such a government body or the Deaf school on the Navan Road in Cabra. There is also ASL (american) but this is a bit harder then the BSL
I would highly recommed it as its a form of communication for you dd and cut down on the confusion and tantrums.

[Alison,]

Thanks for the words of support& advice girls it means alot 😉

Well the news today is : I had 2 missed calls form Enable Ireland and I phoned them back and They are coming to the house on Monday next to get more info on LM and then on Thursday they want her in their centre to be assessed I think. the girl said to me " you are away for the month of august so that rules out any reports being done for LM then " I said no we are not " she said the lady from the hse had it on LM file that we were away for the whole month of august 😈 😈 😈 JESUS give me strength. Idont know how haf of the people get such important jobs. Anyway with all that cleared up she said she would be here on Monday and would go thru what will happened Thursday. This will be the start of a long haul I reckon but a postive move.

I also bought LM Baby Bumblebee dvd online , I seen them on the Late Late before how they help children with speech probelms etc . so I am goin to give that a shot with her.
Has anyone used these or know of anyone that has . I see they are recommended on the Autism Ireland Website.

[scole1]

if you want i have the sheets from the class i did, i could copy and post to you pm me if interested will get them sorted for you…..or turn on cbeebies in the morning they do something special they do sign language

[Taylor5]

That sounds like a move in the right direction. God how could your one from the hse have on the file away for the whole month!!!! Are they over worked or just total idots?

I would highly recommed the signlanguage but if you want the cheaper option I’d use BSL as you can buy more books and the books are much better quality and clear pictures. Waterstones only stocked bsl or asl I’ve only seen an Isl book in Scoles house and to be honest I thought it was utter crap, not one child in the pictures were doing the correct sign not even close…. I cant remember the name of the guy (but half the waterstones books are from this author) but he is a world leader in sign books and the photos and Illustrations are brilliant and easy to follow

[Alison,]

well I just got a call form enable ireland to say Lm assessment on Monday is CANCELLED due to a breavement of the girl who was doing the assessment 👿 , God its awful that they dont even have anyone to cover such things.I dont know if Thursday is even going ahead now 🙄 🙄 the lady said she would ring me back.

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