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How do you fit enough therapy in?

(12 Posts)
OuchDownThere Sat 27-Apr-13 09:04:39

salondon I love that list idea, I think I might give it a go as it might help me get a bit more focus. My ordered head likes to 'clear my desk' each day and it's just not possible to apply that mindset to a child! I need to find a new way of getting some structure, even if it's a loose one, just something that at least makes me feel a little less like am drowning.

moomummy thank you for posting, can I first take my hat off to you for sounding so calm and rational when you have such young children. Your post is reassuring on a number of levels. We have the huge question mark of whether to try for a second child, The more I hear of families who have gone on to have more children gives me confidence that we could cope. I think DS would benefit form having a sibling hugely and I don't want to deny trying to give him that but the thought if going through it all again terrified me. I just want to do the best for him and want him to be happy, making that judgement call needs to become a leap of faith I think.

there I admire your honesty with yourself that you don't want to become your DS therapist, I am sure there is a lot of that going on with me. I feel out of my depth, I found the transition to mum hard enough without also becoming expert OT/PT, i don't have the skills that the pros have and am struggling with trying to have. I have just contacted a potential private PT and said that I need to find someone who can give me the confidence to work with him at home.

Feel really energised today and can start to see a way forward, your posts have been a huge help, thank you. Am going to get that DLA form done today, first thing off the list......

thereonthestair Fri 26-Apr-13 18:07:08

I have a ds with moderate cp. again I am tempted to say I don't fit it all in. It is better now than it was to start with. We had slt to start with but don't now. Now it really is just physio, paeds and a bit of ot. I work 0.8 of a ft job, dh works ft.

we kept working as i am determined not to be ds therapist. so I work to pay for others to do a much as possible. Unfortunately my DS lovely private physio is currently off sick and this is a real problem as the nhs are useless. But when she is working I pay her to do as much as possible. I have a cleaner and a gardener. So outsource whatever I can.

I also find I try and fit in physio in everyday activities. which I manage to a greater or lesser extent, and now have stopped noticing that I just hold things in certain ways, make ds stretch etc when he needs to do things.

I started to read books again after about a year post diagnosis. I found I had to do some things for me. Otherwise I would go mad. I also try to do the best I can as much as i can, so for example I am teaching ds to swim because I would teach any child to swim, and it is therapy DS doesn't notice.

Also I get DH to do his share to get some time for me, he takes ds on his trike, and does various other things.

And I live in a messy house and have very few friends left! They have to be patient with me. I also ask for practical help when I can. So lifts, food, anything I think of. People rarely say no but don't know what to offer. I do however think it might be easier to have a cute child with a physical disability as people can see the dfficulty which they can't with all conditions and I am not shy at asking for what I need. And I am immune to the stares a lot of the time.

MooMummyMoo Fri 26-Apr-13 17:45:12

Ouch, I don't often post but I saw your message and just wanted to reassure you. I have a 3 year old daughter with severe global devleopmental delay. I then also have a 2 year old and a 1 year old (and one on the way!). Like you, I work from home too.

You can't do it all and things will slip. Therapists only see their own therapy and forget you have all these other things to fit in. Their view of half an hour of this and half an hour of that....well there are only so many hours in the day.

The number of appointments for us has improved as some happen at my daughter's pre-school where she goes each morning. But we still have weekly private physio, weekly donkey riding sessions, private speech therapy and many NHS appointments for one thing or another to fit in. To be honest I don't do much dedicated hands on therapy myself. I try to incorporate it in to what we are doing already as much as possible or snatch 5 minutes here and 5 minutes there. For me it isn't realistic to sit down for half hour or one hour sessions to work on one thing with her. I also think smaller, shorter bursts and lots of repitition works just as well if not better in our case.

I also think for my daughter, I want her to live her life as well. Yes we go to lots of appointments but I also want her to have time when she is just doing regular things - playing with her toys etc without me/someone 'working on her', but just playing and enjoying herself for the sake of it.

Anyway, I am starting to blabber on I think. What I am trying to say is that you'll never feel you are doing as much as you should - that's just par for the course of being a parent I think! Give yourself a break and just do the best you can, and that WILL be good enough x

salondon Fri 26-Apr-13 11:27:42

Ouch - I think that feeling(not doing enough) never goes away. You will always have something new to try. I read on one of the Facebook groups recently or probably the TACA pages that you need to have 2 lists - One that is current things you are working on now and another that is you want to do but cant do just yet. You then move one or two items from the second list to the first list every few weeks. I still have to make these lists blush.

Another thing I want to do is read more literature about the spectrum and intervention(only then you can keep 'topping-up' the second list). Cant find the time or energy to do that. I recently spoke to a mum of 3 and she sleeps only for a couple of hours a day!

OuchDownThere Fri 26-Apr-13 11:06:20

Salondon I think we need a bit of your approach in this house. Like your 'show' analogy a lot. Will be having a chat with DH I think about getting our house in order.

I do want this feeling of not doing enough to pass!

zumbaleena Fri 26-Apr-13 10:31:24

SALondon...I think I finally understand where you are coming from and that yes...you are a good mother....sorry...I misunderstood and gave you that yelling I gave you the other day!

salondon Fri 26-Apr-13 10:17:56

How do you fit enough therapy in? - I don't. This is my biggest concern as of now. The only way I managed to get some sanity in my life was by hiring tutors and paying for their professional service. I don't think I can myself do that quality of therapy at all. I am good at running the show, cant perform in the show myself

I work full time outside of home and use my travel to read/relax(How does one relax on a packed Jubilee?)/facebook(am on a few facebook groups related to ASD)/yahoo groups. My lunch hour/quiet periods at work are spent in filling forms, calling various "professionals". I spend an awful time on Mumsnet and such forums at workblush.

My daughter is 3y7m and she has a lot of gross and fine motor skills issues too. That is one area I struggle with the most. We take her to the soft play areas, messy play etc, but not enough. Have had to deal with ear infections and eye patching in the past.

I try and schedule 2-3 appointments in a day - so that my day "off" can be utilized effectively. I have also started sending some "experts" to the day care and asked the SENCO to deal with them. All "observations" are done in the day care. My excuse is that she clings to me when I am around and you dont get a full picture wink

Personal life/me time - What Personal life/me time/exercise? That one's on the back burner for the time being. We aren't going on any holidays and haven't done so for the last 2 years. All my annual holiday is used up for appointments and the money is going on therapy

Have hired help to cook, clean & help me with my daughter. I am also thinking of getting a special needs nanny for Saturdays and train her on ABA

I don't want this to simply "pass". I am sure our kids will do well because of all the intervention, want to make the most of her pre-school years.

OuchDownThere Thu 25-Apr-13 19:49:12

Skewiff thanks for posting, it's nice to hear that the hard work pays off and the DC can catch up. Sometimes it's hard to not focus in the worry of will he catch up and just crack on with working hard and seeing him flourish.

Thank you, got a lot of perspective from your post and realise that we need to look at priorities not trying to do everything.

skewiff Thu 25-Apr-13 13:45:25

You have my sympathies: My DS is now 6 and has mild cerebral palsy.

Therapies, for us, took up most of our time at the beginning. My DP took over all the cooking and cleaning jobs. I chose not to go back to work and made my full time job the therapies that we did at home and going to all the appointments for DS.

It paid off and he caught up with other children over time. Not completely, but enough that nowadays things are not a fraction as stressful.

This time will pass. Just try and enjoy your time with your DS. I tried to do as much as I could at home, rather than rushing everywhere. We paid for therapies ourselves, but I chose to get home programmes that we could carry out ourselves.

There are often NHS things/ appointments that are a waste of time. Sometimes I wasn't always brave enough, but I tried not to bother with things that weren't actually helping DS.

I gave up on personal life and exercise for a while and came back to that slowly.

Good luck and be proud of yourself because you sound as though you're doing the best you can for you son.

OuchDownThere Thu 25-Apr-13 13:39:22

It's it working out what is best isn't it. I think working is best for us too as kit and therapy is so expensive, am fortunate can do from home but it doesn't help with freeing up time to concentrate fully on DS. I do wonder if that is the thing that needs to give sometimes. But you can't live on fesh air either!

Will PM you the OT, not in London anymore but know a good physio who also has OT's.

sioba Thu 25-Apr-13 13:29:03

Hi, Apologies for not answering your actual question but could I just ask if you are situated in London and if so could you let me know who the good OT is? I'm looking for one to work with my 9.5m old son (he is developmentally delayed with agenesis of the corpus collosum) but can't seem to get a recommendation from anyone.

On the appointments thing - I know exactly how you feel. I've been back at work for about 1.5 months now and am really struggling. I work a 4-day week and try to organise appts for my off day but so far I have either taken time off or switched my non-working day every week I've been back. I really feel like a total slacker. I also feel like I am not doing enough with my son - his nanny takes him to some of his phsio led groups and I am worried about losing touch with his treatment.
I also have a nearly 3 year old - who gets lost in all of this - most Fridays (when I am not at work) he is coming along to appts for his brother.

I still think that me workig is for the best - it means that we will be ableot afford private treatments etc. But It really is hard - thankfully my employer has been amazing about it.

OuchDownThere Thu 25-Apr-13 13:06:20

Am finally admitting that it's all too overwhelming trying to fit in enough therapy for DS (17 months / gdd). How do you make it work whilst also doing some part time work at home, do things for fun and just live / keep on top of cleaning, do some exercise so you don't end up like the unfit blob I have become / cook / have a personal life and so the list goes on.

I've finally found a good private OT so DS is now starting to play with toys, still looking for a decent private physio as still not weight bearing but in the meantime also seeing NHS OT/PT and weekly portage, as well as the regular hospital appointments - you know the drill.

I am spread too thinly trying to do it all so not doing any of it very well, how do you guys fit it in? I can just manage getting him to each appointment, but then transferring that into every day life I just can't seem to crack. Do you have set times in the day? How do you manage to do all the therapies when your DC has so many areas that need addressing?

And don't get me started on spending forever doing the DLA form online only for it to crash the day before it was due.......... I do now have a paper form sitting looking at me.

Can you just give me the kick up the bum to just suck it up, try harder and know that it will (might) get easier.

Does the mumsnet mantra of 'this too shall pass' ever become applicable?

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