[jdmum]

Hi i was just wondering if anyone has advice on how you make a choice between mainstream and special needs school - my daughter has downs syndrome and will be 4 in May.  She is starting school in September this year and i went to see a spcial needs unit which seemed fine her oldler sister goes mainstream and have always been quiet keen on sending her to the same school - but not sure which way to go.  Any Advice?

[Julie]

Hi jdmum

It is really difficult for any of us to advise you what to do, as all children are different.  However, I do sympathise with you, as it is a difficult choice.  My son (who has Aspergers) is in Mainstream school and is doing really well.  However, I do know that if he were to go to another Mainsteam school nearby he probably wouldn't be doing so well.  If you want to send your daughter to the same school as your other daughter, why not have a chat with the school to see what they can offer.  Why not see if you can speak to other parents of children with special needs at the school, to see what their experiences are (although this can be quite difficult).

Good Luck anyway, and welcome to the site!
Best Wishes
Julie

[johnvb]

Hi jdmum,

Well, where do I start? We have 2 children, Micheal who attends a special school and Elise who attends a special needs nursery attached to a mainstream school. She is reception age but has been back-yeared in the hope that she will cope better with the reception class next year.

As to which approach is better, if there is anything our experiences have taught us is that there is no right or wrong answer. It galls me when I hear of professionals and politicians who believe that a blanket policy along the lines of "all children should attend a mainstream school" is right. Equally the policy which was often enforced not so long ago of sending all children with additional needs to special schools is just as damaging for some children. All children are different and need to be considered on a case by case basis, and if at any point you feel that your daughter is not being treated in this way then fight your corner and stand your ground!

Michael attends a special school for children with additional physical and medical needs. The advantages for him include small class sizes with high supervision levels, a tailored curriculum at a pace suitable for his needs, access to speech, physio and occupational therapies at least once a week (in many mainstream placements this might be once a term!), and a fully inclusive environment where no-one is left out. All these attractions aside, the disadvantage is that he interacts with only a relatively small number of children of varying communicative abilities. But the bottom line is we know in our hearts that if you put him in to a mainstream class he would be unable to understand the same topics as his peers, he would not be able to do the same PE lessons or play the same games at break times, and his speech is hard to understand for the uninitiated leading to frustration and rejection. We often try taking him to a more mainstream environment such as a party but always come away depressed for these reasons.

Elise, on the other hand, is a very different child. She has ADHD (not formally diagnosed yet though), ataxia and emotional issues relating to adoption. But what makes her different to Michael is that her "pace" is much higher - she can absorb new concepts quickly and although I'm sure she will find some things very difficult, I think she will broadly be able to follow a mainstream curriculum. I really hope that the mainstream environment will be supportive enough for her though, and was quite disappointed to hear that the school are concerned as to whether she will manage in the main class and are suggesting we look at special schools.

So, in terms of advice I think its got to be along the lines of that you know your daughter better than any educational psychologist or other professional. Go and take a look at the various options in your area, ask if you can see some classes in action, and try to imagine which environment would be best for her if she had the appropriate support. Once you've decided then make sure you get it! My wife Paula said that it's one thing to be able to cope in a school environment, but a completely different thing to flourish in an environment and I think she has a good point!

Hope my waffling helps a bit, and best of luck with the decision,

John

[Speeds]

Hi

I send my son to mainstream with no resource unit and he is doing really well now.

In his class there is a little boy who has Downs who we have known since they were both babies and he is doing well there.

My only concern is that it has taken 2 years for Thomas to be able to access all lessons with his classmates and that is with leaving him down a year (he should be in year 2 but he is in Year 1 now having done reception twice).  I feel the same for the DS boy who has many lessons with his helper.

Personally, while I think we all want to do the best for our children, what matters is also what is best for you and your family.  If the unit at your daughter's school looks good and your other daughter is happy at school and you are happy with the school then I would IMHO send your little girl to the same school.  The other things to think of is for you - different schools, different holidays potentially, clashes on events, your girls may miss each other.  On the up side, your daughter may be better at a Special Needs school.

It is a minefield and personally I feel that you need to take the advice of your support workers and also what is best for you to ulitmately make your decision. 

Whatever you decide, remember, it can be re- evaluated at a later date and just because you have chosen one path, it does not mean that this has to be stuck with.

HTH and good luck with your choice.

[paula]

Lots of good advice here. One thing that I would add is that sometimes there is not an ideal school and the best is the only choice. We are in that situation a bit with Elise as academically she would just about manage having been back yeared but socially and concentration wise she wouldn't in a mainstream setting. Do we go for the academic or social benefits? Still not sure where she will end up but wherever it is it will be the best place that we judge at that time (education authority allowing!!). As Speeds says, things can change and it may be that a year or so down the line the choices we make may not be suitable and they need reviewing.  Go with your feelings and just do the best that you can.

Good Luck!

Paula

 

[jdmum]

Thanks for all your advice - very helpful it is a very hard decision to make but I have now decided to go with my heart and send my daughter mainstream where her sister goes and see how she copes.  At present she is in a mainstream playgroup with 1 : 1 support and coping quiet well.  At the end of the day if she does battle and is unable to cope we can then always change schools while she is still at such a young age.

[Speeds]

Wishing you all the luck you need.  I am sure that it will work out.  It will be hard wherever you go - honestly, it is not easy so do not be put off by Mainstream and Special Needs.  If the staff are willing to listen and help then you will be just fine.  Younalready have experience with the school so that should help you identify up fromt  any areas that you think may be difficult at first.

One thing - which I am SURE you all do is to label absolutely everything - and I mean everything. 

[Dibleydowns]

Hi there

Sorry to bother you but I have just had a baby who has down's syndrome. We didn't know utill he was born so it was a complete shock to say the least. He is now 12 weeks old and has just recovered from open heart surgery. The past 3 months have been really stressful and my partner and I are fighting all the time. We also have another son who is 2 and he is more than a handfull! I'm feeling really overwhelmed at the moment and really need someone to talk to who might understand all the feelings and emotions we are experiencing. Alex is beautiful and I fell in love with him straight away but I'm also feeling alone with all this. As your daughter is now four I was hoping you could offer some advice or confort

[paula]

Sorry to hear that things are so difficult for you. You have been through a lot in a very short space of time and you experienced a whole load of emotions which is tough. Elise is adopted so we pretty much new what we were getting ourselves in for, but I remember when we first had Michael - our natural child - experiencing the overwhelming feeling of loss for everything that we had expected parenthood to be. Whilst we loved our son to pieces all the worries about sleepless nights, changing nappies and breast feeding paled into insignificance when we were faced with the prospect of raising a disabled child. It is a very overwhelming experience and all of a sudden you are faced with the situation of getting your head around the diagnosis, finding out about benefits etc , together with a seeming endless parade of appointments and having to explain to everyone else what is happening with a brave face whilst crying alone on the inside. Combine this with the other 'normal' relationships and day to day stuff that you have to do, then I am not surprised that you are feeling overwhelmed.

Certainly I would advise you to access a support group or find someone in a similar position to yourself if possible, possibly through Portage or the Health Visitor. I know that we began to turn the corner when Portage introduced me to another mum who was also going through a rough time - the overwhelming sense that I was not alone and there was someone that I could cry to on the phone with them absolutely understanding without me having to talk was phenomenal. Wanda still is and always be a fantastic friend and is one of the few people who really understands. Hopefully this website too will be able to offer support as it is so important to talk to someone.

Not sure what your circumstances are or where you live but another thing which I found very useful was counseling. I know that it is not for everyone but I was very lucky and was referred to a fantastic pediatric counselor. The best thing that she ever said to me was that all the emotions that I was going through were perfectly normal and if I was not feeling these things then it would be weird. This acceptance was very important to me as I was feeling very guilty at having a beautiful son but feeling the saddest that I ever had. Being surrounded by happy smiley families just made the situation worse. My counselor was brill and even now, if I am going through a difficult time, I know that I can ring her up at any point.

Another option could be contacting a local befriending group such as Face 2 Face. I am involved with this group now and basically parents of other children with similar special needs will come around for a chat and sign post you to information. It might also be worth contacting your local Family Centre as they often run sessions for children with special needs.

Overall, I would say that you need to take things at your own speed and if there are times when you want to shut that front door and not face the world, then do that and eat a big bar of chocolate at the same time! It is very early days still and there is a lot to take in emotionally and practically. Discovering that you have a child with special needs is often likened to the bereavement process - for some it is relatively quick and for others in can take years to come to terms with the situation we have found ourselves in, if at all. What makes this process difficult is if you and your partner are at different stages and for men particularly because they are not so involved in the day to day business they can find this very difficult to accept. Try and keep channels open and talk to each other as much as you can - it is hard but admitting that things are not right is the first step to mending.

Above all though, don't lose sight of the fact that you have got a very special little boy who needs his mummy and all the love that you can give him. He might need therapy and medical intervention, but at the end of the day he is yours and always will be. Look after yourself too and if things get too much then please don't bottle it up - there are people out there who can help. I hope that Special Families can too. There are a really lovely group of people on here and you will never be on your own - feel free to bother us at any time!

Love to you all

Paula

[Speeds]

Hi

Sorry to hear of the streses that you are going through.  I know your life has been turned upside down.  All the happy "normal" things you thought you would be doing (and for you have done before with your now 2 year old) have not materialised with your little boy.

It also must be extremely difficult watching your little boy uindergo surgery too - very mixed emotions I can imagine.

I must admit that I did always feel a little different with Thomas my little boy , now 7 who has a chromosome problem - like your little boy has with Downs.  It has been hard, frustrating and sometimes made me feel like life is so unfair but on the up side - I have a beautiful, polite, smiley happy little boy who's give away is his academic ability - not anything else.  Thomas is in a class with a little Downs boy who we have known since Thomas was about a year and he is doing really well with his support.  All the children inthe school (mainstream) love botht eh little boys which is fantastic.

It sounds like you and your partner need to sit down and have a good heart to heart over you family.  Your little boy will become the light of your life, just as your other child is.

Good luck and don't forget, it is natural to be angry, sad and all the other emotions - just come and talk about them though.  As Paula suggests, see if there is a support group - it does not have to be one for Downs but finding others who you can talk to will help.

[Dibleydowns]

Dear Paula

I just wanted to say thank you so much for taking the time to reply to my post. It really does mean a lot and thank you so much for your friendly words of advice and kindness. Your , it is still early days and 'we' as a whole family just need some time to adjust to our new addition.
Alex is a wonderful baby and I'm still surprised how strong my feelings are towards him. He has started smiling and cooing now whenever I talk to him. He is so sweet and so contented. He is a joy to have.
I just wondered, did you adopt your daughter when she was a baby?

Thanks again I am very gratefull

Sarah

[Dibleydowns]

Hi there

I just wanted to say thank so much for your kind words of support, it really means a lot to know there are other people out there who understand what we have been through.
Alex is such a wonderfull, baby and when ever I look at him I feel so much love I wouldn't change him for the world.
I was just wondering, did you know of Thomas's condition before he was born? If you don't mind me asking, what chromosomal problems does he have? I'm really glad he is doing so well and he is a happy contented little boy.

Thanks again

Sarah

[Speeds]

Hi Sarah

No I did not know - he was diagnosed with Prader Willi Syndrome at 4 weeks old - bloods were taken at 4 days after birth though - that is how long it took.

Thomas has a Chromosome 15 defect int hat he has two of my chromosome 15s instead of one from each of us. 

I had no inkling that I was carrying a child with difficulties.

It was a huge shock at 4 weeks old to be told you baby has an incurable chromosme defect - especially after he was doing so well.

Big hugs to you and speak more soon - Thomas is just off to additional needs football and needs me to find the shoe that I KNOW is with the other one under the stairs 



Thomas in his PJs with his bestest friend Zola

[paula]

Hi!

We actually adopted Elise when she was just two years old. It was funny as her prognosis and how she has turned out are very different. When we got her, the consultant said that she had moderate to severe learning difficulties, significant physical delay and would never live independently. Now, although she still has her physical problems and manages to crash into EVERYTHING (in the last year she has fractured her collar bone and knocked her front tooth out!) her understanding is fine (if selective!) and she is attending a mainstream school albeit in the special needs unit. Her main issues now are behavioural and emotional but when I think back to when we first got her she has come on so much. Because her prognosis was so poor, social services were about to give up on trying to get her adopted which is really sad for even though she is challenging and certainly hard work, we all love her to pieces, especially her 'big' brother Michael (most of the time!). People often say how hard it must be having two children with complex special needs, but we don't know any different and wouldn't know which way up "normal" children go!!

Take care.

Paula 

[Dibleydowns]

Hi there

Thomas looks like such  a lovely, happy little boy! And yes I can certainly relate to the shock of finding out your child has an incurable problem, especially with all the health issues that go along with it. For me it's not Alex's Down's syndrome which bothers me. It's his heart condition and all the other health risks and complications which may also crop up in the future. Hopefully most of it won't materialise. All I want is for Alex to be happy and healthy even though his heart will never be perfect and he may need further surgery in the future. I just want the best possible life for him. He is a very dertermined little boy, I can see that in him already.

I hope you find the shoe! Speak soon and take care.

Sarah