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Deafness, Sensory Processing Disorder and now potentional ADHD

(9 Posts)
CMW14 Thu 22-Sep-11 09:26:14

My son is nearly 5 and is profoundly deaf with bilateral cochlear implants. Despite being implanted two and a half years ago his language is poor at best. He is a very difficult child, choosing to climb, screech, swing, jump anything except sit. He has no sense of danger or consequences and is at worst like a feral wild animal. At best he can be gentle, attentive and interested but always on his terms. He is medicated at night to sleep which still doesn't keep him asleep. For 3 years I took him once a week to The Elizabeth Foundation in Portsmouth which is an aural preschool for deaf kids. They were fantastic but suggested he had other issues. I took him to the John Tracy Clinic in California (another preschool for deaf kids!) for a month last year and they suggested he had Sensory Processing Disorder. The OT's were brilliant but their strategies largely inneffective, unless you are able to time-manage every second of your life. I have tried as well but I am no superwoman. Now after waiting a year for assessment I have heard from High Trees Deaf Children Psychiatric Services that he has scored above the thresholds for ADHD but too young to diagnose. In some ways I am delighted as we can technically treat him but it's like a light switch has gone on in my world and I can see his unmanagable behaviour for what it is and now I need it to end.
Is there anyone out there with a similar experience or can anyone give me any advice/ info on ADHD, treatment and hoops I am going to need to jump through? A lot has been done already, but the battle continues and I have experienced some very good support from doctors, OT's TOD's and other professionals, albeit painfully slow. Some days I spend in tears and others I see glimmers of hope. Today though, I honestly believe that the fault is not mine or his and now we can move forward.

dolfrog Thu 22-Sep-11 15:31:14

It is possible to have co-existing problems, of which ADHD may be one.

Cochlear Implants can also sometimes result is in some auditory processing issues which are still on the cutting edge of auditory research.

This issues can take some time to positively identify and diagnose the UK centre for these complex issues is Great Ormond Street Hospital.

anonandlikeit Thu 22-Sep-11 16:14:07

not sure if Lottiekenkins still posts on here but her lovely ds is deaf but also has other dx.
He is a lovely young man I'm sure she'd be able to help.

kissingfrogs Thu 22-Sep-11 22:45:18

It's so complex when you have co-existing conditions, and very difficult to identify whether one condition exists independantly or is a consequence of another.
My daughter does not have the level of difficulties that your son has but she does have a hearing impairment combined with a language problem that isn't ususal for someone with her level of loss and who is aided. She's 6 now and has started to say one or two revealing things like she can't hear people if they speak loud (yes it does sound like a contradiction but think of the distortion of sound as volume increases), or if they speak fast (to her a normal pace of speech is fast, speech needs to be lazily slow, unhurried), or if it is noisey in the room. Certain people she can't hear at all (seems to be those people with accents, monotone voices).

I know this post isn't helpful re adhd, but I wanted to reply about hearing issues in the hope that something may be useful (and wanted to bump the post for you).

mariamagdalena Thu 22-Sep-11 23:41:33

My DS was treated for ADHD before the official age of 6. I would have thought that it would be even more justified for a deaf child as the consequences of not being able to concentrate and attend are even worse.

I pushed for a trial of treatment. it's unlicensed in under 6's but then most drugs are, as no companies want to test drugs on babies and preschoolers.

rebl Fri 23-Sep-11 11:18:04

My ds doesn't have the same level of deafness as your son. He's mod / sev bilateral, dual aided. He's got behaviour problems and he's been assessed by CAMHS for a while now. They were sure he had sensory processing problems so is now just starting being assessed by sensory OT. She's is sure that there are a multiple of issues with DS, deafness being one. She says that when there is already a big dx (such as deafness) it can be very hard to unpick everything else. For instance with my ds she's convinced that there is SPD but she thinks that there is a medical issue with his swallow and something is really not right with his gait and needs to be assessed as well. But until all these things have been unpicked they can't easily dx. CAMHS for instance won't tackle the challenging behaviour more until they've got a sensory diet from OT. OT can't go jumping in with a sensory diet until swallow and gait have been assessed. Its taking an age.

daisydoodle1 Fri 23-Sep-11 16:25:05

I don't post much but just wanted to say I have a son with bilateral C.I's and ADHD too. There are 3 teams of psycs around the country who specialise in deaf children. It was through them we got our sons ADHD diagnosis. There is 1 team in York, 1 in Dudley (Birmingham) and another somewhere else. At 14 he was also diagnosed as autistic so I think I probably know alot of what you are going through. You are not alone. If I can help let me know smile

CMW14 Fri 23-Sep-11 17:44:49

Thank you all for your posts. I have a lot to think about.
daisydoodle, did you have similar problems? Was your son medicated? If so did it help his language? How did you cope with his behaviour? Who helped? I think we must be with the 3rd team of psychs in London. We have a meeting in 2 weeks when they outline their intervention package. I worry so much about time slipping away and he still can't talk. His frustrations are only going to get bigger. They are now trying to involve social services which I am hoping will be a good thing?

rebl Fri 23-Sep-11 18:20:30

My son is under the specialist team of psycs (his is an outreach team based in Manchester). They are really very good.

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