Whether you are on the road for a diagnosis and services or just wondering whether you should perhaps get a few things checked out, you might find that your “SatNav” does not have the settings to get you where you need to go.
Obviously the advice will need to be updated as legislation and access changes. Much as the directions you get change when the council build a new roundabout or someone plonks a port tunnel over the road you used to go on to get to Clontarf.
The oldies can get you the general drift but it is the most recent travellers who will be able to give you the latest information about the new route.
With Contributions from Olli and Stormcloud.
1. Do out a CV of your child.
In this will be;
PREGNANCY: How was the pregnancy? Were you ever ill, did you have any infections, a high temperature, could you eat normally or were you very sick all the time?
DELIVERY: Was it full term and normal or were there any complications.
FEEDING: Were they a good feeder or poor? Fussy and hard to get to the bottom of the bowl or bottle.
SLEEP: Always sleeping? Or were they difficult to settle always crying and preferring not to be touched or the other extreme ‘too good’ on looking back, very quiet and not requiring much attention.
DEVELOPMENT: As much as you can remember when did they first sit independently, crawl, walk.
SOCIAL/PLAY: Does he/she seek you out to play, make eye contact, play with children of own age or older?Do they respond to their name being called? Do they play appropriately with toys or prefer to line them up, turn them over and play with wheels, or other repetitive actions. Do they gather objects and collect things that are not very interesting to others? Do the play with other things inappropriately, turning on and off lights, opening and closing doors etc.
TOILETING- Do they seem to have any recognition that they need or have gone to the toilet. Are their poos normal or do they suffer from constipation or diarrhoea?
PERSONALITY- Are they happy and content or a bit frustrated and cross with life? Uncomfortable in their own skin? Always in need of comfort and attention? Totally adrift and seemingly oblivious to others including siblings and peers?
FAMILY - A little bit of who is in the family, other brothers and sisters and how they are and ages.
MILESTONES:I did this on a time line basis.Birth to 6mts6mths - 1yr1 yr to 18mts check up18mths to twoTwo to two and a half etc.and I update it every now and then which is handy for myself also to see how far she has come.
When I did it first it was soooooo depressing and read;“No speech, no eye contact, no response to name, no play skills”And I cried inside doing it.
Now I am writing lots of “Can Do’s” so just be strong for the moment.
Bring this CV with you to each and every appointment that you attend.You will get fed up with answering the same questions and can just hand them all the details beautifully printed out by you and they will see the time and effort you are making into dealing with your child’s well being.It shows you expect a high standard.
You mean business. (As Hammie says, in a nice way)...but never the less you are no push over.Unfortunately in dealing with the HSE and Dept of Ed, those who shout loudest get the quickest response! So get vocal.
COMPUTER.If you don’t have one, investigate whether there is some way of getting access to one on a regular basis. Can Santa bring one this year? There are basic laptops available from internet sales companies for less than €500. From that you will get a V.A.T. refund of about 20%.
Another tip: Always take the accidental damage policy when you buy, you will live to be glad you did!
When you get your computer set up; Open a new folder with your Child’s name and keep the CV in it.You then will be able to print if off whenever you want. As you get your appointments ask them to post you out a copy of the report and if they can email it to you also. This is nearly always possible nowadays and it means you just have to print it off from your new folder when attending appointments or applying for services.
Very handy and time saving!!
Also in this folder keep note of all appointment dates such as what age your child was at the time, whom it was with and what the outcome was.
For example: “My child had ears checked (normal), eye (Slight problem) Brain scan (normal), Bloods (normal) Saw a paediatrician, two psychologists, O.T and on and on. It can be a lot in the first while but as I say.You’re on the road now just mark down the route markers and go with the flow until you find your own way along.
2.
Get a Sponsor!
Just like A.A. there is going to be someone further along the road to diagnosis and treatment than you are.
You can only take in so much information at once so making contact with someone who can tell you what you need, and then tell you again when you are ready to listen; is invaluable.
Start building a network. If you are in a school placement, join the parents association. Chat to the other parents there and ask questions, someone will take you under their wing.
If you are getting a health based service, ask about facilitating parents groups. Most health centre based services will offer some kind of parent involved service such as "Hanen" or "Early Bird" where you can meet other parents and start chatting about where you are up to.
If you have none of the above, look up your local advocacy group. There may be a national body which represents your particular disability and can direct you to locally based members who meet regularly. Swallow your pride and front up to the next meeting or, if you get a contact number, GET ON THE PHONE! Don't wait for them to ring you.
And, when you are in these group situations, stick out your hand, introduce yourself, and suggest meeting for coffee or something stronger soon. Remember a problem shared is a problem halved and when you can share it with someone further along the road than yourself, they are going to help you.
Now, nobody is going to ride in on a white horse and pick you up and rescue you. You will have to listen and act on the advice given.
Being helpless will only get you so far in this world. At some point the Hero in those melodramas is going to get sick of rescuing the maiden from the railway tracks/burning building/stampeding buffaloes and say, "Heck! When is she ever going to help herself already?"
Listen, learn and take action. Show the sponsor that their advice was well taken and they will look out for you and help where they can. "Offer it up" and you will be on your own.
Then, when you have your shit together (it takes about 2 years) take a look back at your old self and then see if you are ready to help the next person coming along......
This is for FrancesJ. Who is doing great, Joy and I can retire!
xx
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