Feeling helpless

poconnor16

Hello to all.
I am a mother based in Cork and I think my 2.5 year old son is on the spectrum. I have a nephew with severe autism who I am quite involved with so have some previous knowledge and exposure. I have brought my son to an S&L and she has raised her concerns. We are currently waiting to be contacted by the assessment of need officer - I contacted her today and she confirmed forms received and we would hear in the next few weeks.
I have so many concerns, but my first is how long this will all take. He needs intervention now and I feel useless because I cannot give it to him. I am willing to look into private assessment if anyone can recommend? I might not be able to afford it, but if it helps him I will find a way.
Thinking longer term, I sense he will need me big time. I'm looking at my current lifestyle and I don't think it is or will be conducive to giving him the support he needs. My average work week is 48 hours, I am expecting baby number 2 in October......I feel like I need to give up work but financially we will struggle.I am so stressed about how we will cope with all of this. I see fabulous support groups like Shine but I cannot access them right now.
I am not afraid of what this may or may not be - I'm lucky to have such a wonderful nephew who has taught me not to be afraid of autism. He is a great person to be around. My son is an amazing little guy with such potential. But it's my job to maximise this and right now my hands are tied.
I'm so sorry for the long post, for anyone who is still awake and reading I am very open to comments, suggestions, information.....anything that will give me direction.

angelll

Hi PoConnor,
Don't dismiss shine, i'm from limerick and had no diagnosis for my 3rd son and rang them one evening as i had heard they were good and they were so lovely, gave loads of advice even though i was out of the area. You could get a diagnosis privately now but it won't entitle him to early intervention unless your local service provider accepts it so i advise waiting on the aon for that. However given your sons age he is actually entitled to home tuition from 2yrs 6 mths in the home. This would mean a qualified primary school teacher coming to the house for 10 hrs per week (goes to 20 hrs when he turns 3) doing therapy/aba/floortime etc. This is diagnosis dependant and only available to children with an asd diagnosis. I recommend going to prof fitzgerald : http://professormichaelfitzgerald.eu/cv-2/ He comes to cork once a month for clinics, it's €350 (€250 if a member of dca warriors on facebook) to see him and receive diagnosis on the day, he's v quick, it won't be a big long report but it will enable you to get the tutor in place. If your son is in a childcare setting the tutor could actually go there to work with him so don't discount keeping your job yet, see how things go. The diagnosis will also mean you can apply for the domiciliary care allowance (not means tested), incapacitated child tax credit and/or carers allowance or benefit. There's also carers leave to consider. Hope this helps

Violet Sun

Okay gaining access without a "diagnosis" is like trying to unlock a door with out the secret key.

I realise the above statement doesn't really help. To add to the fun your going to be told this is the worst part but once it is over things will be easier.

As for working or not. Look it really depends on the needs of your child & the services available allowing you the ability to work. I had no choice but to go part time until she was in school. Because I had to take my daughter to therapy & pick up. All an hour at a time. Except for ABA therapy which is a minimum of 1 hour per session.

There are schools that provide ABA therapy as part of their corriculam. Some kinders I haver heard do too. Fund is available also once diagnosis is there.

In meantime I'm curious as to what early intervention you have been using to begin this. Speech pathologist???

Look up ABA therapy & some u-tube clips to help you do stuff at home with your little one. If you like look for ABA therapists I saw some advertising here on boards.ei. Look up Pecs & u-tubs clips (if little one is non verbal). Look up Makaton also which is sign language just for key words you use a lot. Like Help, want, thank you, etc. it's just a visual add but it all helps.

If you have an I-Pad see if you can down load some free ABA apps. They may too advanced now but will help. Play to you kids strengths.

Oh boy there is so much you can do. I promise it's going to be okay. My girl was barely able to string 3 words together at 3.5 years old and when she did no one could understand her. She was screaming, concentration span of a pea, anxious, no eye contact, hypo, unable to even hold a crayon.


She now feeds herself, dresses herself. Was fully toilet trained by 4. Fully audible is learning to read & write. Is no longer doing specialist math & joined the rest of her class in that area. Whilst her reading & writing is still behind. She's catching up, and the school she goes to is mainstream. She is skipping, she can catch a ball, throw too (ASD kids are not known for their athletic prowess)

This is scary, but I again promise there is light & lots you look up to start helping.

CaraMay

Go to prof Fitzgerald ASAP. He has an office in cork and his diagnosis will be accepted by the dept of education for home tuition purposes. You get 10 hours from 2.5 years to 3.

Violet Sun

CaraMay wrote: »

Go to prof Fitzgerald ASAP. He has an office in cork and his diagnosis will be accepted by the dept of education for home tuition purposes. You get 10 hours from 2.5 years to 3.

He is supposed to be great. I'm not in Cork so services in that area local are not known to me. But I have heard this about him. Definitely use the at home services. I makes a huge difference

poconnor16

Thank you all for your input and helpful words. A lot has happened and I feel like my life has taken a spin!
I contacted Shine and they have been an amazing support. They recommended a private psychologist, we went and he has been diagnosed with an ASD. Her diagnosis will allow us to get the home tuition and she stressed the need for ABA. I now have to face all the forms etc. but at least I know the direction to go in.

CaraMay

poconnor16 wrote: »

Thank you all for your input and helpful words. A lot has happened and I feel like my life has taken a spin!
I contacted Shine and they have been an amazing support. They recommended a private psychologist, we went and he has been diagnosed with an ASD. Her diagnosis will allow us to get the home tuition and she stressed the need for ABA. I now have to face all the forms etc. but at least I know the direction to go in.

I can help you with forms and to find a tutor if you need help. Just send me a pm with wuestions you may have. Well done so far

poconnor16

Thanks CaraMay , will do!

mohawk

Waiting for the diagnosis is very tough. There is so much uncertainty. I remember worrying about if I would be able to continue to work, who would take care or him etc. I think it all depends on where a child is on the spectrum and if they are verbal or if there are behavioural issues.

Some kids on the spectrum don't need things like ABA.

I don't know what areas of your sons development you are worried about but if it is speech then look up the Hanen Centre website. The HSE in my experience uses a lot of their resources for speech therapy.