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Spreading the Love When You Have a Special Needs Child

1
As is well documented, life with a special needs child can be hard. But it gets even harder when you have one or more children along for the ride.

It’s so easy to get sucked into the vortex of life with Child 1 (special needs) that Child 2 (no special needs) feels ignored and less important. How can we counteract that?

Here’s how I do it (and it’s a work in progress which is why I’m not saying this is how I did it):

A little background: Child 1 has a very rare neurological condition called Landau Kleffner Syndrome. Don’t worry if

SelfishMother.com
2
you’ve never heard of it, before his diagnosis, neither had I. It’s a rare and aggressive form of epilepsy which can cause seizures and more commonly, robs the child of expressive and receptive language.

In some cases, the child loses the ability to tell the difference between a dog barking, a doorbell ringing and someone calling their name. As with all neurological conditions, there are wild variations and Child 1 didn’t lose his receptive language skills which meant he could still understand everything he heard.

In our case, over a

SelfishMother.com
3
nine-month period he started having grand mal (aka falling to the floor and thrashing around) seizures. First one, then two and at their peak, 40. In one day. During that time, he also lost his ability to speak. It started with a stammer but 14 days later he was down to grunts and groans only. You can imagine how distressing this was for him and for us.

Over the following months we were at the GP what felt like every week, three different hospitals, meeting with the local authority special needs team, at private hospitals when the NHS were too slow

SelfishMother.com
4
and overwhelmed to help us and eventually finding a diagnosis and treatment at Great Ormond Street Hospital (who are just as amazing and wonderful as you think they are) which led to speech therapy, music therapy and weekly nurse visits to make sure his variety of medications weren’t doing irreversible damage.

During this harrowing time, all our thoughts and energies were so consumed with getting a diagnosis and treatment plan for Child 1, that Child 2 told us that she felt left out. Although she is four years older (so 7/8 years old at the time)

SelfishMother.com
5
she was still very much a little girl and although she was wonderful, loving and caring with her little brother, she couldn’t help but feel like all the attention was focused on him. Which it kind of was. So we had to step back and reassess the situation to make sure, to the fullest extent possible, her needs weren’t being sacrificed on the altar of his. Here’s what we did:

Explain
Child 2 had a front row seat to what this syndrome was doing to her little brother but it was mainly in snippet form and pretty much always the worst of what

SelfishMother.com
6
happened that day. So we sat her down, and in as child friendly a way as possible, we explained what the disease was, the affect it was going to have on him and as result, all of us. We explained that yes, he was going to take up more of our time but that it didn’t mean we loved her any less. This was our new reality and we were all going to have to readjust to it.

Involve
So she wouldn’t feel like an outsider, we took her along to as many doctor/nurse/therapy appointments that we could. Healthcare professionals are adept at dealing with siblings

SelfishMother.com
7
so if we had the option to bring her (and sometimes siblings weren’t allowed) we did. So she came to GOSH where she got to play with the toys too, to EEGs where she got to help place the electrodes on his head, to speech therapy where she also got to blow bubbles out in an at attempt to relearn tongue and mouth control. Nurses appointments to test blood pressure and urine meant she could have her BP tested too or test his/mine/the nurse’s. What was a necessary evil to us was fun to her, and by extension him. It meant less leaving her with a friend or
SelfishMother.com
8
family member and it became a family outing to his appointments. Of course, a sweet treat on the way home always helped.

Reassure
We had to constantly remind her that our attention levels are not an indication of how much we love. That his illness meant he required more time from us but that we didn’t love her any less. We had to put that into action too, so sometimes one of us would stay with him and the other take her to the park/cinema/restaurant so she could look back on the glory days of being an only child but also have our undivided

SelfishMother.com
9
attention for a while. Its so clichéd but true; they’d rather your time than a new toy and your time doesn’t require batteries!

Fast forward 2.5 years and we’re one of the lucky ones; medication and speech therapy mean he’s seizure free and has regained all his speaking skills. To all intents and purposes, he’s just another boy in the class. But we all remember what we went through during those trying months and actually feel closer as a family as a result. A silver lining maybe?

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By

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- 15 Sep 16

As is well documented, life with a special needs child can be hard. But it gets even harder when you have one or more children along for the ride.

It’s so easy to get sucked into the vortex of life with Child 1 (special needs) that Child 2 (no special needs) feels ignored and less important. How can we counteract that?

Here’s how I do it (and it’s a work in progress which is why I’m not saying this is how I did it):

A little background: Child 1 has a very rare neurological condition called Landau Kleffner Syndrome. Don’t worry if you’ve never heard of it, before his diagnosis, neither had I. It’s a rare and aggressive form of epilepsy which can cause seizures and more commonly, robs the child of expressive and receptive language.

In some cases, the child loses the ability to tell the difference between a dog barking, a doorbell ringing and someone calling their name. As with all neurological conditions, there are wild variations and Child 1 didn’t lose his receptive language skills which meant he could still understand everything he heard.

In our case, over a nine-month period he started having grand mal (aka falling to the floor and thrashing around) seizures. First one, then two and at their peak, 40. In one day. During that time, he also lost his ability to speak. It started with a stammer but 14 days later he was down to grunts and groans only. You can imagine how distressing this was for him and for us.

Over the following months we were at the GP what felt like every week, three different hospitals, meeting with the local authority special needs team, at private hospitals when the NHS were too slow and overwhelmed to help us and eventually finding a diagnosis and treatment at Great Ormond Street Hospital (who are just as amazing and wonderful as you think they are) which led to speech therapy, music therapy and weekly nurse visits to make sure his variety of medications weren’t doing irreversible damage.

During this harrowing time, all our thoughts and energies were so consumed with getting a diagnosis and treatment plan for Child 1, that Child 2 told us that she felt left out. Although she is four years older (so 7/8 years old at the time) she was still very much a little girl and although she was wonderful, loving and caring with her little brother, she couldn’t help but feel like all the attention was focused on him. Which it kind of was. So we had to step back and reassess the situation to make sure, to the fullest extent possible, her needs weren’t being sacrificed on the altar of his. Here’s what we did:

Explain
Child 2 had a front row seat to what this syndrome was doing to her little brother but it was mainly in snippet form and pretty much always the worst of what happened that day. So we sat her down, and in as child friendly a way as possible, we explained what the disease was, the affect it was going to have on him and as result, all of us. We explained that yes, he was going to take up more of our time but that it didn’t mean we loved her any less. This was our new reality and we were all going to have to readjust to it.

Involve
So she wouldn’t feel like an outsider, we took her along to as many doctor/nurse/therapy appointments that we could. Healthcare professionals are adept at dealing with siblings so if we had the option to bring her (and sometimes siblings weren’t allowed) we did. So she came to GOSH where she got to play with the toys too, to EEGs where she got to help place the electrodes on his head, to speech therapy where she also got to blow bubbles out in an at attempt to relearn tongue and mouth control. Nurses appointments to test blood pressure and urine meant she could have her BP tested too or test his/mine/the nurse’s. What was a necessary evil to us was fun to her, and by extension him. It meant less leaving her with a friend or family member and it became a family outing to his appointments. Of course, a sweet treat on the way home always helped.

Reassure
We had to constantly remind her that our attention levels are not an indication of how much we love. That his illness meant he required more time from us but that we didn’t love her any less. We had to put that into action too, so sometimes one of us would stay with him and the other take her to the park/cinema/restaurant so she could look back on the glory days of being an only child but also have our undivided attention for a while. Its so clichéd but true; they’d rather your time than a new toy and your time doesn’t require batteries!

Fast forward 2.5 years and we’re one of the lucky ones; medication and speech therapy mean he’s seizure free and has regained all his speaking skills. To all intents and purposes, he’s just another boy in the class. But we all remember what we went through during those trying months and actually feel closer as a family as a result. A silver lining maybe?

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I'm a London-based mother of two (aged 6 and 10) juggling family life, freelance communications work, writing and editing at The London Mother and attempting to keep my agent happy by getting my book in on time!

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