Waiting on needs assessment - What can I do at home?

yellow hen

I have applied to HSE for a needs assessment for my 2yr9mth old. Having passed the denial stage, I'm still in the devestation phase but slowly moving towards being proactive at home whilst we're awaiting the verdict. My son has only about 10 words and even at that, they would only be understand by me and my husband. I was thinking of making laminate flash cards for learning and repetition at home. Does this work well? Can anyone recommend me online resources for same? Would be delighted for any advice anyone can offer as we just feel so helpless at the moment.:o

Some background on my son if it helps:
-He's had a history of reflux as a baby and now has asthma
-He had grommets fitted in August (more to do with ear infections than hearing although his hearing was prob average/below average). One has already fallen out and due to be replaced in January
-He processes requests and orders quite well although engagement can be an issue.
-He's very cuddly, loves creche and other little people although he's often on the peripheral of a group enjoying watching the kids rather than participating with them
-He's hyper and since I've read up on indicators of ASD, I can see that he does things like run in circles, used to (although doesn't do it as much anymore) walk on his tippy toes
- He definitely regressed from where he was at about 18 months to now.
Not sure if any of the above helps but it might be useful to someone who's already been through all this.

CaraMay

Book an appt immediately with a private paychologisy who will give you a diagnosis. Should he be diagnosed with asd then you are entitled to tax rebates and home tuition to help your child. I went to professor Fitzgerald in blanchardstown whose diagnosis is accepted by the dept of education for home tuition purposes. Where are you located? He costs up to €350 for the diagnosis which is a lot cheaper than most of his contemporaries.

yellow hen

Hi Caramay, I actually booked an appt with Prof Fitzgerald yesterday and we're meeting him this monday. I feel sick with anxiety about the whole thing. I know so little about the implications of this diagnosis. ie. At 2yr9months, is he likely to exhibit stronger symptoms later or if they are mild now, are they likely to remain so? I'm amazed at how little traffic comes through this particular forum also which indicates that it's not particularly common, no?

CaraMay

Hi op it's very common. Our HSE psychologist reckon it's close to 1 in 20 boys now. Have a look at my post to mangotracy from a week or so ago and you will see the immediate steps to take. Pm me with any questions you may have and if I can help I will.

My fella also had reflux and a lot of antibiotics as a baby. Turns out he now has leaky gut so he's on a special diet and supplements to help fix his gut. That's another story though

CaraMay

No one can tell you if his 'symptoms' will get worse but the sooner you start early intervention, in my case, the less likely it will be.

Prof Fitzgerald will ask you for all your sons history etc sitting up, crawling, walking etc and any 'issues' in your families eg Down syndrome. He asked if we had many bachelors and 'spinsters' in the family. So be prepared for a detailed history of the child's milestones and family background as well.

eviltwin

Wishing you the best of luck today Yellowhen. I was you a few years ago, my youngest had issues and I was desperate to hear that it was nothing. I have an older child with ASD so I should have been prepared and ready but its a tough thing to hear that you child has issues, even mild ones. I also went to see Prof Fitzgerald and it really helped to have the formal diagnosis, its a lot easier when you can actually put a name to his condition. Its made a huge difference to me and to my son and has made his school experience so much easier. My son has Aspergers and ADD and he was a total handful when we went aged 3, he's 6 now and doing great, you're getting in there even earlier so better again.

CaraMay

Are you on the autism mamai page on Facebook? I believe you get €100 off his consultation fee if you are.

yellow hen

Thank you both. For the most part I honestly feel that there is something wrong but that it's mild. I'm terrified of getting a diagnosis of something more severe. In a way, I've cried most days this week and I feel like I'll be ready to accept some form of diagnosis when it comes. It's something you never imagine for your child is it? He's had such a crap time already with reflux and now asthma
Appt is on Monday evil twin but I'll post back here sometime next week. Caraway I'm not on that Facebook group. I don't need family and friends to see I'm in the group until we can deal with it ourselves first.

Roselm

yellow hen wrote: »

Thank you both. For the most part I honestly feel that there is something wrong but that it's mild. I'm terrified of getting a diagnosis of something more severe. In a way, I've cried most days this week and I feel like I'll be ready to accept some form of diagnosis when it comes. It's something you never imagine for your child is it? He's had such a crap time already with reflux and now asthma
Appt is on Monday evil twin but I'll post back here sometime next week. Caraway I'm not on that Facebook group. I don't need family and friends to see I'm in the group until we can deal with it ourselves first.

Highly recommend two books:
Hanen More Than Words (for kids with asd or characteristics of asd and focuses on getting the interaction going) and
Hanen It Takes Two to Talk (for kids with language delay.more focused on the language development)

Both give ideas of how to use games and everyday situations as language learning opportunities.
I wouldn't recommend flash cards as they take away the fun.
Kids learn when they are engaged with what they are doing. The Hanen books give advice on how to modify your language to highlight it for your kid and create clear opportunities for him to try out new words.
Both can be bought through Amazon or ordered into bookshops.
Local libraries sometimes have them.
Best of luck with your little boy

yellow hen

So the day is finally over and we're all exhausted. I'll briefly try run through everything....

We met with Michael Fitz early this morn. Fairly grim clinic and stuffy office which wasn't really for kids so that was stressful trying to entertain him there. To be honest, he only asked maybe 20 questions. I asked twice if we were minimising his symptoms and we both said we felt we were being very honest. I wasn't mad about how he was forming his diagnosis....just one example -

'How is he in creche?'

'He loves it and he sits down with all the other boys and girls etc.'

'How is he at playtime?'

'Yeah, he gets excited by the other kids but I would consider him maybe more of an observer than a participant'

His take on that??? - 'So he's a loner?'.

I thought that was a bit of a leap for a child under 3years of age. In general, he's a bit of a strange man but I would say that he doesnt intend to be rude. He felt our son displayed tendencies of ASD but there was a fine line between ASD and Speech/Language delay. In particlular, I felt he formed alot of his diagnosis based on the milestones he had not reached by 18 months ie. pointing, waving etc. He asked if we would be comfortable to treat it as ASD for now and err on the side of caution. We were happy with this diagnosis and to be honest were just relieved that he didn't say our son's symptoms were in any way severe. He dictated a letter there on then which stated that he recommended the maximum number of hours of home tuition. In total it took about 40mins.

We then went from there to the HSE to meet our new PHN (we've just moved counties), She was really nice and reassuring and said that to her eye it was encouraging that he was so happy and playful and good with eye contact. Also the fact that he even has 12 words was a promising development. We told her about the morning's diagnosis and she said that was enough for her to request more urgent input from the area medical officer so we could go ahead and push for physio/OT. S&L won't occur until he's had his full AON. Finally, this eve we had his first real private S&L session. It's frustrating and he could only give attention for maybe 2-3mins at a time but the therapist wasn't deterred by that and told us to persevere with engaging him at home.

All in all, it was a good day. Probably what we expected but relieved it wasn't worse. I felt a weight lifted about meeting the HSE lady and reassured that this was indeed something we would learn to handle and work with.

CaraMay

Hi glad it's all behind you! Tbh it doesn't really matter what prof fitz says as his diagnosis is just a means to an end. You can advertise for a home tutor now and get the diagnosis into your seno so they can sign it and send it to the dept for approval. Likewise I would get the diagnosis into the tax office to get your
Incapacitate child tax credit. Make sure the parent who has paid the most tax over the last three years applies for it. Please shout if you need any more detail

yellow hen

Thanks caramay, I know I'm going to hound you with dozens of questions in the future. I'll get the form for home tuition filled in as soon as I get the written diagnosis. As my son is under 3, he has to get the hours tuition in the home is that right? I guess that means I need to take time from work to be at home for that.

Where does one even begin to look for a tutor or what am I looking for? I feel totally clueless

CaraMay

I'll drop you a pm.

CaraMay

yellow hen wrote: »

Thanks caramay, I know I'm going to hound you with dozens of questions in the future. I'll get the form for home tuition filled in as soon as I get the written diagnosis. As my son is under 3, he has to get the hours tuition in the home is that right? I guess that means I need to take time from work to be at home for that.

Where does one even begin to look for a tutor or what am I looking for? I feel totally clueless

Sorry missed this question. Would you consider carers leave from work. You can still work 15 hours per week and are entitled to 200 per week as well for 2 years. It wont be too hard to manage when he is on 10 hours per week but when it goes up to 20 it gets tricky then.

Be aware that if you state on your home tuition form that he's in crèche for e.g. 3 hours per week they reduce his home tuition by 3 hours, even if the tutor is in crèche with him!!!!

The Black Oil

yellow hen wrote: »

We met with Michael Fitz early this morn.

~

In general, he's a bit of a strange man but I would say that he doesnt intend to be rude.

He is supposedly on the spectrum himself, afaik.

yellow hen

So I'm back with more questions!!

Hi, I've posted here a while back but just to update... our 2yr10month old has had a diagnosis of ASD from Prof Fitzgerald. He was considered borderline, to be reviewed in 6 months. There is a small chance that it is just a S&L delay. We're awaiting an AON but having spoken with the local officer that will be late April at the earliest. We've met our local SENO also and have filled in the home tuition application and submitted that.

My question is, what is the right thing to do?

1. Leave our son in full-time creche and continue with private S&L while awaiting HSE S&L (probably March)

2. Do the above but in addition also avail of the 10hours home tuition. We got a cv of a current primary school resource teacher but we haven't a clue what we should be looking for. Is it detrimental and confusing to our son to introduce too many people into his life in short-term roles?

I'd be really grateful for advice from people who've already been down this road. We're totally confused as to what the right thing to do is.

CaraMay

Sorry for monopolising the thread. We were told our son needed to come back in 6 months for a full diagnosis as he was considered 'pdd nos' - asd traits but not full asd. He is definitely ASD but does have a lot of milder areas on the spectrum. Im personally glad I didn't wait 6 months to see how it panned out.

I don't trust the HSE / EIT as they cannot realistically commit to dates. If any one member of the team even goes out sick the whole thing tends to collapse. I know one county where there has been no psychologist on the EIT since last May - no diagnosis given on any child in the county since last May!!

If it were me I would get the ASD diagnosis from Prof Fitzgerald and get an aba tutor started straight away. Very few primary teachers have the skills you need.

Sorry if I keep beating the same drum.

limnam

yellow hen wrote: »

So I'm back with more questions!!

Hi, I've posted here a while back but just to update... our 2yr10month old has had a diagnosis of ASD from Prof Fitzgerald. He was considered borderline, to be reviewed in 6 months. There is a small chance that it is just a S&L delay. We're awaiting an AON but having spoken with the local officer that will be late April at the earliest. We've met our local SENO also and have filled in the home tuition application and submitted that.

My question is, what is the right thing to do?

1. Leave our son in full-time creche and continue with private S&L while awaiting HSE S&L (probably March)

2. Do the above but in addition also avail of the 10hours home tuition. We got a cv of a current primary school resource teacher but we haven't a clue what we should be looking for. Is it detrimental and confusing to our son to introduce too many people into his life in short-term roles?

I'd be really grateful for advice from people who've already been down this road. We're totally confused as to what the right thing to do is.

It sounds to me like the default ASD diagnosis that prof gives.

Although it might sound like he jumped to some conclusions based on what seems at the time very simple straight forward questions it's not really about one specific one it's usually when you hit a few.

E.g he might ask does he like to line up toys, that in itself doesn't mean it's autism but if that's a yes, walking on tippy toes is a yes and in speech delay / lack of social cop on....not pointing.....it becomes pretty clear as painful as that is.

If that's the situation you're in I don't want to seem alarmist but you need to take action and take it now. As Prof said if it turns out it's not well no harm will be done anyway.

I don't know what county your in but I would start looking for a BCBA / ABA tutor straight away. A primary school teacher is going to be pretty much useless you need people who are educated with the right degrees and have the right experience to help your child.

You should be able to find a list of BCBA's here http://bacb.com/
Get on to the Facebook group CaraMay mentioned previously. It's a private group so don't be worried about who might see you in it.

You can advertise there for an ABA tutor and you might also have a look on rollercoaster.ie . I can't stress enough how important it is to get this programe up and running as early as possible.

yellow hen

Thanks caramay and linnam. You're right, I absolutely don't want to hear that it's likely that the diagnosis is right but I appreciate your honesty and experience and it's really helpful in preparing us for what lies ahead. We've looked for an aba tutor on both that Facebook page and rollercoaster and have had no luck. I don't know where to go from here.

CaraMay

yellow hen wrote: »

Thanks caramay and linnam. You're right, I absolutely don't want to hear that it's likely that the diagnosis is right but I appreciate your honesty and experience and it's really helpful in preparing us for what lies ahead. We've looked for an aba tutor on both that Facebook page and rollercoaster and have had no luck. I don't know where to go from here.

I promise you that no one does but it will not help to wait 6 months!

I'll pm you email addresses in the colleges to contact re aba tutors. I know it's very daunting but get that diagnosis by email and you can start from there.

limnam

yellow hen wrote: »

Thanks caramay and linnam. You're right, I absolutely don't want to hear that it's likely that the diagnosis is right but I appreciate your honesty and experience and it's really helpful in preparing us for what lies ahead. We've looked for an aba tutor on both that Facebook page and rollercoaster and have had no luck. I don't know where to go from here.

Email the lectures in the college that CaraMay sends you.
They will circulate the email around the colleges for you.

You need to be posting your advert in the facebook group a number of times a day be very clear in it what you need where you are etc which will encourage responses.

On rollercoaster bump your thread often to keep it on the first page be clear in the subject what you require where your located etc.