First Time Posting - feeling helpless - FASD Support

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First Time Posting - feeling helpless

Trampoline11 profile image
3 Replies

What can I do to help my 12 year old adopted son? Having had 2 Ed Psychs see him at school, paediatrician has diagnosed ADHD. I disagree with this due to his birth mother's addictions. (I am trying to make this as short as possible, so do forgive me if there is not enough information.) Paed will not refer him for anything such as genetics. I even thought I could pay for Surrey clinic. Naiive of me I know! I did speak to the Dr there and he basically said that I need to get the Paediatrician on board as without this, I won't get anywhere. I don't want a label just for the sake of it but feel uncomfortable about talking to him about it without professionals behind me.

As he's getting older, his problems are becoming more apparent to other people. He doesn't go anywhere without adult supervision so I talking about school people. I can't call them friends any more as they seem to be blanking him. Ever so slowly at first - no invites back etc. My heart is breaking for him.

I don't know what to do. Will have to stop as I can't see for tears

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Trampoline11 profile image
Trampoline11
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3 Replies
bowiefan profile image
bowiefan

Hi I feel your pain. There are lots of parents out here who feel like us. Contact the Fasd trust for support and information and they also do fasd link (support) groups for families throughout the country. The Southampton one is in October. Also if you join the friends of the Fasd trust on Facebook it's a closed group you will see lots of posts are similar to yours which helps me stay strong and believe I will eventually get there for my children. Good luck

ourlife profile image
ourlife

Hi,

We are foster Carers for twins, and have been where you are, the system simply does not work, we have a diagnosis of ARND, we had every one refusing to see us in the beginning, persistence is the key. Eventually a GP made a referral to a geneticist but as both parents could not be tested results were inconclusive ( even though they both have the same chromasone dellition ) but did rule out any other symptoms, we kept going to GP, pedeatrition, social worker and threatened to go to our MP until eventually we got a referral to Great Ormand st.

Good luck,

Ourlife

dianakitten15 profile image
dianakitten15

Hi there,

Attention deficits (being unable to focus) and hyperactive behaviours (being impulsive) are symptoms which may indicate neurological damage. If the child with those symptoms has been pre natally exposed to alcohol (adopted children disproportionally affected ie. as many as 75% may have FASD) and there is evidence of pre natal alcohol exposure (n.b. evidence not required where the child has the facial features of FAS) then there is a clear case for the child being referred to the genetics clinic for an assessment of FASD. Therefore, so far the paediatrician has diagnosed the symptoms but not the cause.

Therefore, in your particular case, either the paediatrician is not up to date with FASD (and you can help educate by taking along FASD Trust leaflets) or, and I think more often is the case that, when we go along to see the medical professionals, as parents/carers, and having already dealt with a myriad of professionals, we tend to talk to each one about a separate issue in relation to the child (ie dependent on the questions they are asking, we may talk to one professional about meltdowns and to another about hyperactivity etc, and I think that what is happening is that each professional seen is not getting the full, overall profile of the child. I think we all end up not being able to see the wood for the trees!

Therefore, what helps is to write a one page overview of your child, starting with a) the fact that they are adopted, b) including the key reasons for removal from birth home (usually incorporates alcohol abuse or indeed other factors which would point to strong likelihood of alcohol addiction) ie these factors can be found in the child's permanence report or child's file from the LA. c) Any diagnoses to date (children with FASD can often be misdiagnosed with attachment disorder, adhd, autism, conduct disorder etc) Then list under the following headings your child's presenting difficulties in the following areas 1)physical, 2)cognitive (mental), 3) behavioural and 4) learning 5) sensory. Finally attach any professional reports which may include SaLT (Speech and Language, Occupational Therapy (OT), Clinical Psychology and Educational Psychology or letters to the school SENCO/teacher about social, emotional, behaviour or learning difficulties.

This will help the paediatrician to make the case for a referral to the genetics clinic and also when you simply pass over a written list of your child's difficulties to the paediatrician, this eliminates the requirement to speak about the difficulties in front of your child (which I know is a common complaint from parents/carers and one that needs addressing by the medical professionals). Also, leave a copy of the overview with the paediatrician to help them write up their notes. A one page overview also saves parents/carers the distress of constantly repeating information over and over again (ie print off copies of this one page overview and pass to each professional you see).

Pls note also that you do not need to pay privately for a FASD assessment, as this is available on the NHS.

If you require any further info about FASD Trust support groups pls contact familysupport@fasdtrust.co.uk

Diagnosis and formal support at school (EHCP) help to achieve the best outcomes for children with FASD.

I hope this helps.

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