Here some suggested organisations that offer expert advice on SN.

Twins one with special needs

(21 Posts)
Albaba Fri 05-Jul-13 08:52:40

I have 21 month old twin girls who were born at 33 weeks. One is perfect and an absolute joy and the other has special needs. The affected twin has been late meeting all her milestones and at 21 months old still isn't walking. She is at the stage were she is pulling herself up on to furniture and side stepping while holding on. She can be a very difficult child. She seems to get frustrated that she can't do things. She can be very emotional crying at the slightest thing and when you try to comfort her arching her back and going rigid. She had an MRI done which showed that she had white matter damage to her brain affecting her gross motor skills, basically mild CP. We only found this out recently, I was praying that the Dr would say her MRI was normal and that she just had development delays but obviously she didn't.
I do try to be patient and understanding with my daughter. I can't help though looking at her sister and thinking that she should be just like you, running about and climbing on furniture and causing mischief but she's not. Ironically the affected twin was the bigger twin, sailed through NICU and was sent home seemingly 'normal'. It was only when she was late at meeting her milestones that alarm bells started ringing. The smaller twin was much sicker and is hospital for longer and escaped unscathed. I don't know what went wrong and when. I feel guilty about what has happened. They are twins but one is 'different' I think it is becoming more obvious now that they are getting older. One is running around and one just sits there. People are noticing now that something isn't 'right'. I am a very private person in RL and don't want it broadcast that she has cp.

OneInEight Fri 05-Jul-13 10:02:32

I have twins and appreciate they are hard work at the best of times but even more so when one or both has special needs. It is natural to make comparisons, however, much you try to avoid it and even when you don't you can be quite sure that they will be comparing themselves to their sibling. In our case both mine have recently received a diagnosis of Aspergers - we wonder whether we did not pick up their problems earlier on because they were both so similar so assumed their quirks were normal boy behaviour. dh and I are also very private people but have found it easier since diagnosis to let people know the reason for the behaviour rather than letting people speculate or assume bad parenting. I know very little about CP but would have thought sidestepping and pulling herself was a very good sign that she will be able to walk before too long. There can also be extreme differences between siblings even without CP - my sister was walking at 10 months whilst I was nearly two blush apparently and content just to watch the world go by at that age. I think we all have a tendency to blame ourselves when our children have special needs but in most cases it is just bad luck so try not to feel guilty - easier said than done I know.

iwanttoscream Fri 05-Jul-13 11:31:39

My twins are 11, dd has special needs, ds does not. They were born at nearly 33 weeks,dd had problem with her umbilical cord. But she's always been different. In September she will start at a ss, while her twin will go to ms. He can't wait! It's hard watching one twin learning, while the other is 4/5 years delayed. I didn't know about mumsnet until we got internet when they were about 8. She finally got her statement a couple of years ago. DD has severe speech and language disorder and learning difficulties, she's quirky as well. Hopefully someone else who has knowledge of cp, will post later.

lougle Fri 05-Jul-13 12:35:08

"One is perfect and an absolute joy and the other has special needs."

Ouch sad Can you not think of any joy that your 'affected' twin brings you?

WRT to people noticing, it won't be a huge comfort, but I've found that as DD1 gets older I have to do much less explaining. Now she's 7 I never actually have to say 'she's got SN', although my reflex is to do so. People have already seen it.

Strongecoffeeismydrug Fri 05-Jul-13 13:23:10

There is 9 years between my kids and I still compare them.
Dd was an easy baby, joy to have child and is now a delightful young adult.
DS was an easy baby, hard work child but still a delightful child.
DS has severe autism but an absolutely amazing adventure for life and his smile can't fail to melt the hearts of people who come into regular contact with him.
It's hard at first but as he's got older its obvious he's got additional needs and I know longer have to explain it to people.

Thereonthestair Fri 05-Jul-13 16:28:45

Lougle I think that was a bit harsh. Especially as Albaba is in the early days. We all know it takes time. The question of what joy the affected twin brings is a good one, but in all honesty I think my DS with mild cp gave me little joy until he was slightly older.

In respect of people noticing I actually think CP is an "easy" one to explain and I was advised a long time ago that you have to have a neutral explantion as your DD will learn how to answer from you. My answer to any questions is his legs don't work like yours do, because he was born too soon. That works for most children. For adults I just say he has CP. I am quite open though, but I found it easier to be upfront than I did to cope with the questions etc.

Come over here

www.mumsnet.com/Talk/special_needs/1671211-Support-information-sharing-thread-for-parents-of-children-with-Cerebral-Palsy-Part-2

for more cp related questions. But also one other thign I would say is at 18 months - 2,6 CP is actually more noticeable as so much of what this age group do is running around.

lougle Fri 05-Jul-13 16:49:30

I was asking a question, Thereonthestair. I found it a bit harsh to read such a stark comparison.

Don't get me wrong, I'm not in the 'Welcome to Holland' camp, but I do think that children with SN can be an absolute joy as well as having SN, when they're on a good day, like NT children.

Swanhilda Fri 05-Jul-13 19:45:19

I have twins of 11 too, one of whom has Asperger's diagnosed at 8 years. Tbh I always found the one who turned out to be SN a joy, and the NT one a bit trickier when they were little. Ds(ASD) needed me even more perhaps than dd in the early weeks due to jaundice and feeding problems, and I think I tuned in to him at that stage, not knowing he had any specific SNs.
I wonder whether the same thing has happened with your daughter who was in special care; ie: you invested so much in her that you now love her better. Tbh it took me a long time to recognise that I was lavishing far more love on ds than on dd.
Now I love them both passionately, and I am beginning to correct the imbalance.
So, to conclude, give as much love as you can to both as you never know how things will turn out.

Beanypip Fri 05-Jul-13 20:13:44

my dd is like yours (though only 16m) she has white matter brain damage (she was 11days late though even though doctors are adament its only seen in Prem babies!) I found it so hard to enjoy her and constantly looked a her faults (can't move stand pull up or get from lying to sitting etc) I was really bad with comparing her to others at baby groups I'd go home in tears most weeks begging her to catch up. when she hit 15 months and one day did the actions to nursery songs I realised I'd spent too long driving myself insane that I looked at all her good points and realised they were more rewarding. yes she can't walk or move but means I can sit on my bum all day wink

I never know what to say to people I just tend to mumble something or if I'm more confident I say she has cp

it must be hard with her sister meeting all her milestones but she will catch up.

mymatemax Fri 05-Jul-13 21:34:16

SCBU is an emotional, awful time & something that stays with you for ever & finding out that your child hasn't comet hrough entirely unscathed is hard.
DS2 was born at 28 wks & has mild cp, autism & learning difficulties.
But his medical diagnosis are just a part of him & although the effects don't lesson as he has got older we see his disability as a much smaller part of him.
It is natural to compare your children, my first was nearly 9 pounds & overdue & soaks up knowledge & new skills with ease.
You will learn to see your girls as the individuals that they are & cherish their achievements no matter how seemingly small

mymatemax Fri 05-Jul-13 21:35:29

Oh & find out where your nearest SN baby group is, there are no comparisons or awkward questions, just support.

Albaba Fri 05-Jul-13 23:16:27

Thanks for all your replies ladies. LOUGLE I didn't mean to sound harsh about my daughter she can be a sweet girl at times too. The previous night she had been particularly unsettled and difficult and I was just feeling a bit down about it all. THEREONTHESTAIR thanks for sticking up for me. You are right we are still in the early stages and new to the SN world. We knew that our daughter had development delays but it is only very recently after getting an MRI done and seeing the Consultant that we have found out that she has mild CP. Seeing the physio once a week now and making slow but steady progress. Thanks for the invite to join the CP thread. I have been reading it. I'm sure I will have many more questions on our new journey. Thanks Albaba.

zzzzz Fri 05-Jul-13 23:53:10

Like lougle I was struck by how negative you are about your daughter with CP. I don't think you should take that as a criticism but as something that may be an issue for you both. I think you need to talk to someone about it, because comparing and finding one a poor comparison to the other will make a very difficult dynamic for the three of you.

I too have twins. My eldest son has a severe language disorder and is very "different" from the average child. Parenting a child with sn is not the booby prize, it's just different. If you don't want to explain to people just say, dd had a harder birth than her sister and look into the middle distance.

It can be a very happy life, challenging but very happy.

bishboschone Sat 06-Jul-13 12:46:07

I just wanted to say my son is very similar to your daughter . He was born at 33 weeks and has just turned 2 . He can cruise well and walk with a walker but won't walk independently . He also doesn't talk and cries at the slightest thing . My paediatrician says he has a genetic condition and had a micro array which was inconclusive. He is globally delayed too. I have asked for a MRI but they have refused as they think his brain is fine . Anyways the point is he is very difficult and cried through frustration which is very draining . I have an older dd so I know he isn't 'normal' although we don't really know how our lives are going to pan out yet . Pm me if you want .

StillinMyPJs Sat 06-Jul-13 14:24:59

Hi there. The early days after a diagnosis are really tough. You do not have to mention anything to anybody until you are ready. A quick 'she'll do it in her own time' and a change of subject worked for me.

People naturally compare twins and you get so much more attention from strangers than when you only have one. This only makes it harder.

My twins are 12 months and both have the same metabolic condition as ds1. I found out when they were a week old. I was devastated and did not want to tell anybody. So we kept it to ourselves for as long as possible. I needed that time to come to terms with it myself and eventually I could talk about it without becoming an emotional mess.

It does get easier.

Your dd sounds like she is getting close to walking. Pulling up to stand and sidestepping is great. My ds also gets frustrated at not being able to do things and it is very trying, especially when you don't get a break from it and you have other worries on your mind.

Hang in there, pm me if you need to chat.

babiki Sat 06-Jul-13 15:10:49

I just wanted to point out that most developmental delays do not catch up, they get later renamed as learninig disability, autism, etc or various combinations...it's a silly silly term - delay...

zzzzz Sat 06-Jul-13 17:05:16

Delay is just that, though I assum it can be so severe you don't "get there". The key is that you are experienceing the same developmental path as the verge person but not at the same rate.

Disorder implies that the order is different than the norm, but says nothing about the rate of progress.

Itis not so much that delays get renamed as children age, more that in the early days "delay" is all that can be said, and later it becomes clear what the issues are.

Swanhilda Sun 07-Jul-13 13:40:43

I've been thinking about your post OP and this time when I read it what resonated was the way that one twin is very draining and one twin makes you feel happy. Whether she had SN or not that is the most important thing for you at the moment, that she feels like v hard work. Which I totally sympathise with. I think with twins, in comparison with siblings, the contrast is so marked that it is difficult not to feel that life would be better, different, a success, if that twin were as they "should be". But I say that in the strange paradox of remembering that my SN child was the one I perceived easy, and my NT child was a constant drain on my emotional reserves. Our children are so much part of ourselves, that it is particularily painful to feel that we could have had a "perfect" child, and yet we are going to be judged on the less perfect child. This is all subconcscious of course, but it affects how we deal with the "difficult" twin.
Now I'm in the reverse situation, and I feel the contrast between dd having friends and fitting in, and finding so many things effortless that ds2 (with ASD) struggles with. And how much it impacts on dd that ds2 should be "difficult". It takes a very long time to be the "perfect" parent for two such different children.
I take comfort from a lot of these posts, and see I am not alone and that parenting itself is bloody hard, whatever children you may have. It seems like other people have it easy a lot of the time, but on Mumsnet you tend to discover that there are so many different children and so many issues that people have to deal with.

Swanhilda Sun 07-Jul-13 13:41:55

Also, that no-one is going to "judge" you because she has CP.

childcarehell Sun 07-Jul-13 22:32:31

My sisters were twins, and one had far far greater needs than your dd. My sister had hydrocephalus which really drew looks, as well as other issues. My biggest advice is treat them as individuals and try to back off with friendships if possible, encourage friendships but don't treat them as one.

PM me if you want, my sisters were much younger so I was a near adult as they grew up and can offer some insight.

MelMc1214 Thu 11-Jul-13 18:01:32

I have b/g twins that are 19 months. During the entire pregnancy I was told my daughter was IUGR. They were born at 34 weeks. We did lots of testing (MRI's, CT scans, ultrasounds), but finally after genetics testing, we found out she has a chromosome disorder (7q terminal deletion). Which affects her development, mobility, speech, motor skills, etc. Her therapist put her at an 8 month old baby level, all the while her twin brother is at his right age of 19 months. She can only roll over right now. Not even pulling up, crawling, waving. She's had therapy since birth (even when she was in the NICU). We live in FL, and they have a schooling called PPEC (Prescribed Pediatric Extended Care). It's basically like home health, but she goes to the facility, instead of them coming to us. She gets therapy everyday. She is also on a g-tube now due to lack of nutrition.

So having twins, with one special needs, is very hard to deal with. I definitely can relate to everything you are dealing with. Try to stay positive, and check out your local resources.

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