The best of intentions

February 22, 2011

The best of intentions

i'm finding myself becoming increasingly frustrated with people who mean well but ultimately get it wrong and make things worse. Yes they're much better than those who are intentionally and outwardly prejudiced towards William, but the steady 'drip drip drip' of good intentions but poor judgement is starting to get to me so i need to vent some of my frustrations here. Feel free to skip this post if you want.

An example of what i'm talking about: recently i've started trying to introduce solids to the boys. Finn took to it like a natural, eating competently from a spoon the first time i tried (without too much mess!) and thoroughly enjoying the rice cereal and applesauce i have given to him so far. William on the other hand is not so impressed and has refused to take any solids at all, even when i dabbed some on my nipple prior to breastfeeding him - it makes him very very cross indeed! So what i've decided to do is get him used to taking some of my milk on a spoon first and then gradually mix small amounts of solids into this, until eventually he is taking just the solids. A plan which i thought was going well so far even though he hasn't actually accepted the spoon into his mouth yet, he is curious about it and not screaming at it, so i thought it was just a matter of time........
In comes the health visitor today who tells me i'm going completely the wrong way about it and it's 'just' his sensory sensitivities preventing him from trying the solids so we need to get him past that so he can actually taste the solids and 'discover that he likes them'. Then she proceeds to smear his lips with the rice cereal which makes him cry very loudly, which she ignores and moves onto opening his hands up (he keeps them closed into fists usually) so that she can smear more rice cereal on them for him to 'explore'. Of course William does not explore either the rice cereal on his lips or in his hands, he just screams and screams and screams. At which point the health visitor mumbles something about him 'needing more time' and beats a hasty retreat, leaving me with an extremely cross William who needs cleaning up and soothing and then feeding. All of which took a long time, so he was late going down for his nap (as was poor Finn who was wondering what on earth was happening), so i'll probably have 2 cranky boys to take to William's hospital appointment later.

i know she was only trying to help and 'do her job' but as William's mother i feel that i know him the best out of anyone so surely she should have listened better when i told her what i think the best solution is for him? i wonder how many babies like William she has actually worked with, or if she knows much about his condition at all. And what exactly is her philosophy behind stressing out and 'forcing' a baby with extreme sensory sensitivities to experience a sensation he was clearly avoiding because he hates? And why when she realised her plan hadn't worked did she feel the need to leave so hastily, leaving me to clear up the mess (literally and figuratively)? i don't think i'll be taking anymore of her advice or letting her try out her little theories on William again because she clearly doesn't know him well enough to be able to be of much help. So thanks for your well-intentioned 'assistance' Mrs health-visitor, but leave well alone in future.

Another example: those people in the supermarket or the library or just out on the street who see the double pushchair and come over exclaiming 'twins? how lovely!'. Then when they get closer and start interacting with the boys and realise that William doesn't give eye contact or show much response to being chatted to or support his own head or grasp their finger or any of those things that Finn does so well, they either go quiet and walk away or they ignore William completely and carry on playing with Finn as if suddenly i don't have twins after all but only one baby. Or if William has a seizure when we're out somewhere and it's an obvious one, i'll get people coming over asking what's wrong with him (he tends to make a funny noise which draws their attention) and when i explain that he's having a seizure they tut and look at me like it's my fault and i should be doing something to stop it or at least be doing something more dramatic than just holding him and soothing him. Or they'll point out to me that Finn is crying (he always gets upset during William's big seizures) and tell me i should be looking after him 'because he's aware of what's going on'. Or they'll ask if i should be bringing William out with 'problems' like that. Or they'll tell me to go home or say 'can't you take him somewhere else?', presumably so they don't have to ever be aware of the fact that some babies have disabilities.

i'm sure that it's difficult for them when they realise that William has some kind of disability and they don't know what to say or how to interact with him, but pretending he's not there isn't going to make him or me feel any better (though it might solve the problem for them). And trying to give me well-intentioned advice in the middle of a William seizure is neither the time nor the place, especially as they have no knowledge of his condition or the correct procedures to follow during a seizure or of our particular circumstances. i'm aware that it would make things much more comfortable for them if i just took Finn out in public, so there wasn't that awkward moment when William doesn't perform in the way that they expect a baby of his age to. And i'm sure it would be much more comfortable for them if they didn't have to deal with the knowledge that some babies have disabilities and medical problems by seeing one have a seizure in the middle of the supermarket. But i'm not going to lock William away, or deny him the stimulation he gets from all the places we go to. So all those busybodies in the supermarket and other public places: you'd better get used to it because we're going nowhere.

Another example: those other mums at the early intervention clinic we go to each week who tell me that i'm doing too much with/for William, over-stimulating him, tiring myself out by doing so much therapy and activities with him, spending too much money on equipment and creating a sensory room for him, that i need to be spending more time and focus on my other children and my husband and leave William's needs to the 'experts' (i.e. the hydrotherapy and physiotherapy he gets once a week each), that i'm not spending enough time on me or looking after my needs, that i'll burn myself out, that i can't possibly keep going like this, that it's unhealthy for me and for William, that i haven't accepted his disability, that i'm trying to find a cure for him, that i'm placing too much hope in all these treatments and therapies and activities (that last comment came when i mentioned that i wanted William to be assessed this week by an osteopath with experience in special needs babies who is visiting the clinic - most mums have said they will not be getting their baby assessed, that she's just after the money, making false claims, that she can't help). They usually go on to compare themselves to me, tell me about all the people who look after their special needs baby for them to give them time to themselves, tell me about their wonderful relationship with their husband/partner, describe all the fantastic achievements of their other children, and then go on to say that they have to be 'realistic' about their special needs baby and accept that he/she may never achieve much.

i refuse to give up on William and just leave him to his fate without trying everything possible that may help. And yes that may mean spending out money on treatments and clubs and equipment that he needs. And yes that may mean me continuing his therapies everyday (because the health system here dictates he is only entitled to therapy from a professional once a week). And yes that may mean i have less time to spend on me, and that the remaining time i do have is spent on Finn and Poppy and my husband. i'm not saying that my way is better, that i'm looking after my special needs baby better than they are, or that William's progress will be more than their babies because of all that i'm doing. i'm not criticising them for leaving the therapy to the experts, for keeping their babies at home the rest of the week, for not building a sensory room in their loft, for using friends and family members to take their little one off their hands for some of the time (infact i'm planning to start doing that myself soon). i'm not in anyway saying that i'm a better mum than they are, i'm just a different mum with a different baby with different challenges and needs and i'm doing the best i can in the circumstances i find myself. So to all those other mums at the clinic (and it's not all of them, but it is most of them): concentrate on your own parenting skills and stop judging mine, i'll do whatever i think is right for my own baby and would appreciate support rather than criticism.

One more example: the people in the chatrooms i visit who either make comments like 'i can't believe how often you're here considering you have baby twins!' or 'i've given up greeting libby now because she doesn't always answer'; i can only assume they're jealous of the friendships i have in that room (with Dom/mes as well as subs) or think i'm 'getting away with not following the rules' because i sometimes don't greet people entering (due to watching William or he's having a seizure) or because i sometimes fall asleep without marking myself afk. To all those people i'd like to say: please put yourself in my shoes, imagine how hard it is to be bringing up 3 children under the age of 3, one of whom has significant disabilities and problems, imagine having to watch your baby suffer numerous seizures everyday and know there's nothing you can do to stop them, imagine your D/s life being put on hold for the foreseeable future due to these problems...... wouldn't you choose to spend your free time (evenings after the kiddies are sleeping) in an environment you find relaxing where you can catch up with your friends and interact in the way which feels most natural to you and which is lacking in your real-life at the moment, where you're accepted for who and what you are without having to hide it, and where some allowances are made for your personal circumstances at the moment? i'm sorry if it offends you in someway, but i don't intend to stop coming to the chatrooms anytime soon, so you'd better get used to it. Any problems, i suggest you speak to Ben.

Wow, that was quite a rant but i do feel better for it. i think some of my frustrations are due to the fact that the gap between Finn and William seems to be widening everyday now, that William is getting more and more left behind, and that even though we have stopped the Infantile Spasms there hasn't been the spurt in development that i hoped would happen and he still has numerous other seizures everyday. Hopefully the consultation with the neurologist later today will give us some new things to try, and hopefully he will continue making progress with his head control like he did in his therapy yesterday (yes the daily therapy that i carry out that some of those other mothers told me wouldn't do any good).

So as not to make this blogpost all doom and gloom, i also want to note here all the things Finn can do now he is the grand old age of 6 months (which will also highlight how much William is not doing, but not in a critical way as i know it's not his fault): Finn can now sit independently for quite long periods of time (though he does still topple over sometimes), roll over both ways from his front and his back, roll over and over repeatedly to move across the floor, push through his legs and bounce when held upright by a person or piece of equipment, lift his arms to be picked up, give hugs, interact with others and initiate these interactions, maintain interactions through different vocalisations, body movements, eye contact, facial expressions, smiles and giggles, have babble conversations with an adult, try to 'talk' to William, play simple turn-taking games with an adult, look to see where objects have fallen, reach for and grasp objects, bring them to his mouth, move them from hand to hand, shake, pat and squeeze them, blow bubbles and make raspberries, imitate tongue, mouth and other movements, copy lots of signs and spontaneously sign 3 different words (milk, ball, bath), try to imitate some sounds after an adult or Poppy, babble with lots of different consonant sounds over and over, squeal, coo, 'sing', kick in a coordinated way, explore toys and objects independently and purposefully, activate cause and effect toys and repeat the actions, look at books with an adult, and on and on and on. There's so much he can do and he seems to learn new skills everyday, whereas William only lays there, can't support his head, will only lift it very briefly on his tummy, keeps his hands closed, doesn't use his hands, arms or legs purposefully, can't play with any toys by himself, doesn't hold anything (or doesn't let go if something is forced into his hand), doesn't make eye contact or show much interest in people, doesn't look at or focus on things except lights or brightly coloured objects (only briefly), doesn't make any sounds except for crying or screaming (we haven't heard his happy noise for a while now), doesn't interact in anyway with others and is refusing to even try solids. It just makes me sad and i don't want to be, but that's how i feel today.

Sorry, depressing post over.