Communication is Key

This is an email I sent to E's preschool teacher. The director of the school called me soon after to say how useful it was so I am glad. E starts tomorrow. He is very upset and clingy today, tearing up off and on. I am trying to keep strong!

Dear teacher,

I wanted to write to you about our son, who will be in your class this year.

E has PDD-NOS (pervasive development disorder-not otherwise specified), and high anxiety.

I thought I would give you as much information as I could so that you are as well equipped as possible to manage E.

He is a kind-hearted, sensitive boy, but is easily overwhelmed and not well versed in social protocol. We think in part this is due to the PDD-NOS, but the anxiety seems to really get in the way of him having the opportunity to develop much needed social skills.

E is very attached to me, his Mother. He has always called his father and I by our first names, however, he knows that we are his "Mum" and "Dad." He has a two year old sister named M.
E spends little time away from me and is usually by my side. We have been working hard to get him to enjoy spending time away from me or on his own, but this is still a cause of great distress for him at times. He will stay happily with his Aunties and with his Nanny and Poppy, but has never successfully stayed with others.
He has a tendency to call other children "Sam" if he does not know them well. Sam is a friend of his, and therefore all friends are Sams!

E is very fearful. He can worry a lot about hurting himself, or about dying (drowning in particular.) He will ask us a lot of questions about something or a situation he is afraid of, but tends to panic and melt down if he is scared and I am not around.

His expressive language is advanced, but he rarely talks when meeting new people.
We assume his receptive language is fine, but were unable to test that during a speech therapy assessment. He was very aggravated, upset and uncooperative, so the session ran too far over time.
He does have a few speech idiosyncrasies, but they are quite random. For instance, he calls wisdom teeth "wizard teeth", power lines "power lions", and a crotch a "crutz." He seems to genuinely not understand that he is using the wrong word in these instances, and there are many other examples.
I will attach a copy of the speech therapist's comments and findings.

E does not like to be touched or hugged, but does touch other people. The Occupational Therapist we were seeing last year suggested that he had a poor ability to judge where his body is in space (poor proprioception.) He often bounces, crashes, tackles etc., and can play too roughly with others (if he can overcome his fear of actually talking to them!)

E is very particular about his clothing and is very prone to taking his clothes off (shirt in particular, but would be too embarrassed to go nude in public!) He regularly complains that he is hot, especially when feeling overwhelmed by noisy or crowded environments.
He does not like wearing a shirt once it has had water etc. dropped on it. I will pack extra t-shirts for him.

E is toilet trained (bar overnight), but is extremely self-conscious about going to the bathroom. We had a lot of trouble getting him to be able to poo on the toilet. He would hold it in for up to a week and eventually stretched himself to the point of foecal incontinence. Fortunately, this is no longer a typical problem, but I imagine he will be extremely reluctant to use the childrens' toilets. He may also try and urinate outside, somewhere private, to avoid having to use the toilet. I would love for him to be able to use the childrens' toilets, but it may be necessary for him to use the staff toilet if it is obvious he needs to go but is refusing.

A "meltdown" for E can be either quite explosive, or internalised.
At home he tends to scream, kick, cry etc. (basically have a tantrum), but it can last up to 90 minutes. Fortunately, it is not that common for this to happen away from home these days. Instead, you may find he tries to "hide" either under furniture or blankets/cushions, or if there is nothing available, he will pull his shirt over his head and curl up in a ball. He will often suck his shirt, fingers or sleeves to soothe himself. He some times flaps his arms.
To be honest, we have not managed to find any one, foolproof strategy for dealing with an explosive meltdown.
Where possible, we try to distract him or get his attention in another way. He is particularly interested in bugs and spiders, and likes the bugs encased in resin at the preschool.
If he is overwhelmed by his environment, we try and remove him. Where possible, we take him outdoors or to an empty room/quiet space where he can not hurt himself. Trying to hold him, or touching him at all, generally intensifies his reaction. If he is not too distressed, but clearly wants to "hide", we allow it where possible. It is a way he has learned to regulate himself.

E is a collector and a hoarder, and will hide things away. He also has a tendency to line things up. He becomes quite attached to random objects and can be quite possessive of them. A few days will pass, and he will have forgotten the once important spoon or seashell and will move on to something else. We try very hard to get him to share, but he can be quite ruthless about 'his' things and gets upset when people move them or touch them. This is obviously something we are really working on improving. We are trying to stress the importance of not taking things that don't belong to him, but we often find items missing from our rooms or the kitchen, only to discover them later, stashed in an old bag or box with other "treasures."

Unfortunately, many social niceties confound E. For instance he does not seem to know that when one is greeted with a friendly "hello", it is polite to respond. We model good manners and always prompt him, but he rarely says "thank you", "please", "hello" or "goodbye."

He is a real stickler for the rules and gets upset when others break them. He just needs to know exactly what they are.

His attention span is pretty limited, as with many preschoolers I suppose! However, he is far happier playing outside and being active than being inside with a book or activity. The OT has suggested that his fine motor skills are not where they should be, but we feel this is more a result of where his interests lie than a physical problem. I have noticed he has a tendency to either press too soft or too hard with the pencil, but I don't know how remarkable that is in a four year old!

E does tend to give "messy" play a go, but can be very sensitive about stuff getting stuck to his hands or face in particular. We find the best way of coping with a messy activity is to have a packet of wipes, tissues, washer or tap nearby, so that at any point he is able to wash his hands. We have been working hard at home this past year on his tactile sensitivities, and he has made dramatic improvements. He used to need to wipe his mouth after every bite of food, but that has improved a lot as well. We have also been working on trying to get him to stop blowing raspberries or making repetitive vocal sounds. We encourage him at those times to try and whistle instead or to at least be very quiet if he must make sounds. It often helps to distract him and break the cycle.

We have been working with a psychologist over the last couple of months. He said he is available to discuss E's needs if required, and I shall attach his contact details to the end of this email.

We have been in contact with a clinical psychologist at a child and adolescent mental health service. We are due to have E assessed there soon, hopefully within the next six weeks.
We are hoping to re-visit with the speech therapist in order to test E's receptive language. We will pass on any results we obtain.
We are also meeting next week with a new Occupational Therapist and again will pass on any relevant information she gives us.

If you have any questions, please don't hesitate to contact us at any time.

I hope I have not included too much irrelevant information, but I thought it best to give more info than not enough.

Kind regards