Letter to the Speech Therapist

On returning home from our weekend away I received a letter containing two reports from the speech therapist who had seen Rosie.

This is my response...from which you will gather the gist of her reports......most galling is I never knew she had seen her!


Dear J,
I was slightly taken aback by your two reports I received in the post this weekend. Firstly I was unaware of your involvement in Rosie's care. Secondly we had not been invited to be there when you saw Rosie!
Beyond that we are totally bemused by some of the sweeping statements and assumptions made in your report and the reference to areas that are not concerned with SALT. Equally we are dismayed in the lack of reference to the issues that do impact on Rosie's communication. Going through the reports I will highlight some of our concerns.
I will agree with your first statement that Rosie understands simple requests and instructions. She will take a pile of her clothes and attempt to put them away when requested. With support she knows which items go in which draw and will let us know where she needs help. She will also follow instructions to take things to each of her siblings to put away! If they leave things she will give them to the right person where she knows who they belong to. Rosie will when asked take her yoghurt pot to the bin, and put her spoon in the sink. She will also attempt to wipe her table.
The second statement however I will argue with. Rosie has had a really difficult time with abnormal brain activity and complex partial seizures which have caused outbursts of aggression and agitation. This seizure activity has had a serious negative affect on Rosie's personality. Rosie also has some underlying issues with pain, most obviously connected with her gastric tract, this causes further aggression and agitation. Therefore she has often resorted to kicking and pinching, either as a release of her own frustrations or to indicate to others that she hurts or
feels unwell in some way. We have begun to get a better control of seizure activity in recent weeks and Rosie's one to one has commented in her book that Rosie is much happier at the moment.
Rosie engages well in any activity that attracts her attention. It is difficult to find a varied number of activities that she will engage in to enable her to demonstrate her abilities. Rosie will not engage in an activity that she sees no purpose in. This can make her appear uncooperative, however she possibly feels the same about us! Working to find something that does interest her and attract her attention is well worth pursuing as she will then often amaze you with what she can do and what she does understand!
Rosie has a problem with her eye movement and will often use the nul point to fix on an object. This gives he impression she is not looking at things properly. When Rosie is inerested in the objects or pictures being offered her she will always show an interest and preference. Rosie is given opportunities to choose frequently at home, what she wears, what she eats, where she sits what she plays with. We use a verbal choice and offer a choice from two clenched fists, if Rosie wants to make a choice she will, she will also choose to ignore at times too.
I agree with total communication, however in some instances falling back on the fists is helpful! Rosie also makes her needs and wants known very effectively with gesture and facial expression. Taking someone by the hand and showing them what she wants. Rosie understands NO but will ignore it if she wants what we are saying no to. No means no in this house!
Rosis was very good with augmented communication at 3-5 years of age. She regained confidence eventually having had to learn a different language when we moved from an area using Bliss to and area using PCS. However after a year in that setting she entered a period of education where she was not allowed to flourish and she lost interest in her camelion and all other forms of “formal” communication. Rosie then learnt to control her environment by refusing to co-operate, and switching off.
This has been a behaviour that has been perpetuated by staff refusing to accept her abilities and insisting on her proving herself over and over. Just as we would not want to repeat a boring task...ie washing the car....just because someone felt we had not proved we had done it already....Rosie does not want to keep revisiting skills she learned long ago.
Although I understand the need for this to some extent it has been an issue that has over the years robbed Rosie of development.
I would be interested to know why we were not invited to discuss the strategies of co-operation with yourself and the class staff?
Why has Rosie been allowed to get her own way? In what way has this been happening in school. I am hoping you mean in school because on first reading this I was furious to think you had made such a wrong assumption of her discipline at home. Having calmed a little I realised you probably meant this happened in school. No Rosie certainly cannot always have her own way, and this must stop as it is never going to happen for her at home! I will be sure to check that they are being more consistent with this in class, so thank you for bringing it to my attention.
We use time out when Rosie refuses to accept no, or is being particularly aggressive, if it is possible that this is pain related we will give pain relief, and possibly sit with her in bed for ten minutes. If need be, Rosie has a safe space we will use, to enable us to remove her from a situation. In other situations we may just sit with her with as little interaction as possible for a few minutes. This is often enough to ensure she is not going to repeat the misdemeanor. If however it is seizure related it can mean just keeping her from harm until she calms, or in severe episodes administer rescue medication. The seizure related activity can go on for long periods and removing her from the classroom to somewhere she will be safe is the only way to deal with this. This is not giving in to her behaviour it is managing a medical situation. Hopefully as school have now seen Rosie in good epilepsy control they will find it easier to recognise the seizures.
Rosie's cognitive ability has in my oppinion been severely affected by her epilepsy. So to has her personality, the personality is shining through again as we get the seizures under control I do not know if the cognitive ability will also come back. It is very hard as a parent to observe the deterioration in your child's development and health. To then have it presented to you in a way that implies blame is doubly difficult.
As I have previously mentioned we offer Rosie choices in most things we do at home. Rosie is able to make choices when they are of interest to her, she will choose not to if she does not see a point!
What inconsistencies in behaviour management do you see...bearing in mind you would not recognise me in the street let alone know how we deal with Rosie's behaviour?
In what way do you feel this impacts on Rosie's ability to communicate?
Taking out the bandwagon you have chosen to jump on regarding Rosie's shoes...if you want consistancy there throw them out! What child do you know who displays the same behavioural issues at home/school/grandmas/church/friends house? How many tmes have you heard a parent say...oh he wont eat that at home or he can do that when he wants to???
All children do things differently in different situations...as a mother of 5 children, a former TA and a Nursing assistant I have many many anecdotal stories I can tell you of such things!
Things we would like to see handled consistently are:-
Remaining sat at the table to eat. Get down once you are asked to come back get down a second time dinner is over!
Food, other than obvious finger foods, to be eaten with a spoon not fingers and hands out of mouth during eating.
If Rosie throws something or deliberately knocks things off the side/table etc she must pick it back up...same if she tips a box of toys out she has to pick them up!
Signing please and thank you...we seem to have to work quite hard for a please and thank you these days where once they were spontaneous. If it is not forthcoming the biscuit or whatever is put back. This usually gets the desired action.
I do feel it is essential that people are aware that children with Cornelia de Lange Syndrome are notoriously reluctant communicators. Even those persons with the syndrome who have good vocabulary are rarely chatty, using few words and preferring not to engage in pointless conversation.
It is also worth remembering that undesirable behaviour more often than not has a medical cause!
What is happening on 6th March???
Best wishes.

I do not know what the future holds, but I am glad I know who holds the future!