Monday – Music Therapy and Speech and Language Therapy
Tuesday – nada
Wednesday – Physio
Thursday – nada
Friday – Physio and Hydrotherapy
Maybe that doesn’t sound like a lot to you. Maybe you are thinking, “Isn’t Stacie on maternity leave? She can fit that all in.” Or, “An hour or two a day, every other day isn’t much for May.”
So also, please consider the monthly visits by May’s community therapists (OT, Physio, SALT)? And Small Steps School?
Not to mention each of these people give May and I homework and that homework takes hours in itself.
At what point is May doing too much? Let me rephrase that. May is doing too much. I’ve already removed her from Small Steps – which was a hard decision months in the making. Everyone at Small Steps was a huge support to us. Why did I do it? Several reasons:
1. May couldn’t do three therapies on Fridays. Even I know that is too much for a toddler.
2. Small Steps is the furthest away and the longest session (2 1/2 hours) so it would take that much more out of May than the other therapies.
3. I can’t handle it.
That’s the truth. I can’t handle day-in-day-out of meetings with specialists that I know can help May – or, worse meetings where I know they won’t help May. Meeting after meeting where well-meaning people sit down with me and we discuss how disabled my daughter is. How she needs standing frames and future wheelchairs and hoists to get her out of bed. How she needs splinting and lycra suiting. How she needs to try chewing with solids, sipping from cups, assisted standing. How we must do for her what she can not like brush her teeth, dress her, hold her chin so she can chew better. How when we dress or bath her we must support her in ways so that she can support herself and encourage her to reach.
I struggle to see, not only how I can physically do all the above x 10 in one 24-hour period, but also bear the weight of the constant voice in my head, “May can’t. May can’t. May can’t. You must.”
I have a splitting headache.
Here’s my final thought. Every time one of them comes to my house and sees my May-bell in her Bumbo seat, they say, “As May’s physio/OT/bum off the street, I have to tell you that May really shouldn’t sit in that chair/She’s too big for it/She’s going to fall over/Shouldn’t push back like that it’s a bad habit.”
Here is a question for them: Do you see her smile?
How can I take away her Bumbo? No one has suggested another means of letting her experience independence. This is the only time she spends on her own, entertaining herself all day.
Every meeting opens up new questions. What I want is answers.
You can read more from Stacie over at BabyCenter.
I say you know when enough is enough.
Hi Stacie: This one really tugged at my mother-heart-strings!
WHO will suffer from a mistake? You and May. So WHO should rule in all difficult decisions? YOU and May, who is making her wishes known in the lovely, lovely picture above — even if she can’t speak, she IS communicating very clearly, as you are so brilliantly aware! ‘Deliver us from the Experts!’
Seems to me, in leading with your mother-heart, you can’t go far wrong. The WHOLE child and her needs must be considered in every decision — and you, her parent (and dad of course!) are the only ones who see MAY — the others, well-meaning, caring, talented as they may be, see ‘a case’ of ‘whatever disability they specialize in remediating’ — not your lovely little Maybelle!
You can do all these for May they are all options to help her. What you and Griff need to figure out is which ones are best for this seasons? I would think of it like seasons of a school year. Then plan her exsperiences to that. Like over the summer their is more time for you and Griff to have off of work. More opportunity for him to take her to one of these and you to have some alone time with Iuean. Then in fall pick two, in Winter pick two new ones or one new and one she is doing well in. Then in Spring go down to one for more time like first Steps. I think if you cut it down then it would be easier for you to handle. And also give May an opportunity to see and learn different things. Maybe too much is too much for her to learn as well, not just you. You are amazing parents so you and griff just need a plan to better serve you and may to learn and enjoy learning.
i completely agree! i am so tired of therapists telling me how horrible the bouncer is for austin, and his high tone muscles. But its so hard for me to keep him out of it, because that is where is the happiest! And completely independent at that. But i agree with madgesw. you know may best and you know when enough is enough for her, and what makes her the happiest
Stacy,
Our foster son kept fussing when school put him in his stander. I kept
him home, and then they came and did it here. I believe his poor little
leg received a hair line fracture. (that’s why he was crying) Then when his
nurse was changing him, his leg was broken very bad. We rushed him to
the ER. He could not take all the meds. they used, and he passed away.
We need to listen to our gut and listen to our kids. Good Luck!!
Stacy, I agree with other posters that as May’s Mother and Guardian (two words that should strike respect and fear into hearts of therapists everywhere – a shame they don’t) you should be the arbiter of how much, when, and what May ultimately does and doesn’t do. Trust your instinct. You can add Small Steps back in when you’re ready, and there’s no rush. You can take only as much as you can take.
As to the practical matter of the Bumbo – and the sheer happiness it brings May. I think the happiness counts for so much, it must be taken into consideration against what the “professionals” are counting. Miss May is also growing, and it’s probably time to be looking out for what comes NEXT. I wonder if there is a “corner sitter” or other moulded, plastic chair sold in a therapy catalog somewhere that might be the next potential supported sitting device that May will love? The independence of sitting – and bouncing! – is so very important… and the support and form she needs have got to be out there. Somewhere.
I don’t know what’s available in Great Britain, but here in the US I peruse the Adaptive Mall (dot com) catalog for inspiration and examples of what other kids use. There are tons of chairs – some on the floor, some slightly elevated, some that fit into larger chairs – and if there isn’t one that looks perfect, there are probably a few that are likely or possible. She’s going to keep growing. You absolutely WILL find her “next great thing.”
Keep breathing. Keep doing what you can do. You’re not alone.
When my son was younger, I turned down services for him. Seven in-home sessions of Early Intervention between naps and lunch and nursing his infant sister made it impossible to ever get out of the house. I had to cut back simply to retain my sanity.
Looking back, I now wonder if the choice needed to be so binary, so “either” sanity “or” craziness and over-taxing for my son. What if there had been an easier way to work the therapies into getting dressed in the morning, eating lunch, or the other daily tasks that we needed to do anyway that I could have desperately used some help with? I was so unsure of myself and the situation at that time that it was hard to think out of the box.
One thing I also remember is feeling guilty about letting my hypotonic son use a walker. All of my typical mom friends talked of the evils of walkers but as their children were already walking, I had the confidence to find one and let my son try it out. He loved it and the independence it gave him. Luckily, our EI PT was very supportive and realized how important it was for his development in other areas–emotional, social–to be able to move himself around with the family.
Later I began to trust my gut a little more. (http://embracingpsnparenthood.wordpress.com/2011/09/14/durgas-toolbox-4-my-gut/) It sounds like you’re already there. Good for you!
Sorry for the rambling response–your post clearly triggered a lot of memories for me and I just wanted to lend support to you for whatever choice you make.
Thanks for lending me a bit of your insight. It is much appreciated! Your post was also very interesting and I would encourage other parents to give it a read. (Great blog theme btw – hahaha!)
My dear daughter~
You are providing such a wonderful, loving home and learning environment for May. I am very proud of you. I realize there must be times that are overwhelming. That is when you need a break or support. I do believe May, on the other hand, benefits from all the therapy and stimulation you give and arrange for her. As for knowing what makes May happy, trust yourself, and for now, Bumbo it is! If anyone can figure out how to balance all this, I have faith that you can. I hope you reach out for what you need. I am always here for you. In response to your birthday request, I am glad you will spend a holiday with us in December, during which time I hope you and Gareht will have some alone time because I want alone time with my granchildren!!
LOL~ Mom XOXOXO
You know what causes May pain or discomfort. Let her use the chair until she will not. Just not when you have guests. Save yourself some grief, don’t ask, don’t tell. If a presidents of the US can go down this road, I figure we as parents can to. There is a positioning chair out there that will work for May. It is a US data base but I’ve found AbleData to be a good starting place for ideas.
I am way late reading and commenting…but I second (or third, or fourth….) the other comments. Do what is best for May, and for you, and for the family. How will you know what’s best? I don’t think, as the mother you are, that you could do something NOT in her best interests…!
And Grandma Barbie…you made me cry!
Have you seen or heard of the Childrite Seat? It’s been designed in USA for children with special needs and is based on the bumbo. Never used it, but sounds like it might be what you’re looking for! Apparently they are happy to ship to UK.
I have bought one for May and she loves it. We are now at the web site mamalewis.com – that’s why this took me so long to answer.