SPD Grandparents Perspectives

by Don

I am a grandfather of a 6 year old boy with SPD. I am trying to help my daughter-in-law and son in how to approach relatives and close friends about SPD, plus, I am still trying to fully understand that this is a real problem that cannot be handled as was done in my generation.

Intellectually, I understand, I've read the books and the websites, but emotionally it is difficult. I'm sure the problems there are well known to you. The skepticism, lack of knowledge and the thinking that SPD is just some problem with the parents not disciplining a kid who manipulates situations, and uses his parents, is probably a very common problem for SPD families.

Where can I go to communicate anonymously with others (relatives of SPD kids, not the immediate SPD family) to gain a better, well rounded set of answers on specific methods for the relatives from their point of view to use when dealing with SPD kids? Methods that move relatives and parents closer together in acceptance and uniformity of approach to managing the problems of the SPD child?

Is there a good book that specifically addresses how to bridge the generational gap and find common ground between SPD parents and older relatives? That details specific methods and approaches to use that somehow allow a bridging of the gap between old and new approaches to what was called a discipline problem earlier and now is really SPD?

The problems for others outside the immediate family are many; we don't want to override parents unless they say we can when our

grandson is with us. We don't want to be subject to an out of control kid or manipulative kid without knowing what is acceptable to the parents for us to do.

In our case, he is very smart, and as such, he is even better at seeing how he can be in "control" of situations, where he sees attention (even negative attention) as control, and so he works that when he gets bored or when things aren't going the way he wants and he isn't the center of attention.

I advocated to my Daughter-in-law that for best results, she needs to get into the shoes of the skeptics in our families first, so that they see that traditional methods of discipline have been tried without success, and that she understands their point of view. Then, and only then, will most people be more receptive to understanding this problem and the best approaches.

I know this adds to their already heavy load in dealing with this day in and day out. But they acknowledge that without coming to terms with the divergence between generations and outlooks, there will only be the two obvious answers of

1. trying to distract the SPD kid towards some more positive activity a tiring task, indeed and

2. avoidance of the problem by less contact, which no one wants to happen.

In both cases, the problems are being circumvented and/or ignored.

But perhaps I can do some leg work and come up with something they can then integrate with their approaches and move forward with on their own.

Any comments are welcome.

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Jul 13, 2017
From a parent to a grandparent.
by: Anonymous

I am another parent who was searching for help to help relatives understand.

And I know this is old but clearly people still come here.

Maybe this may help some grandparents looking to support their own child and grandchild. This is what we want and need from our family as one of many spd families. And likely you will find your own child wants the same sort of thing.

I apologize in advance for any mistakes as I'm just spilling it out as it comes.

We are 15 months post diagnosis and things will likely change again as they do.

My 4th child has spd among other issues, my first 3 don't. This was all new to us.

My 4th child was born prematurely, well before his brain and nervous system had fully developed and signs of sensory issues became obvious from being a really tiny baby. That couldn't bare to be hugged.

Back then we did wrong and with instinct carried on trying to hush a 2 plus hour screaming sessions with no sign off illness, even gp visits clueless we were making it worse.

In the earlier days i have almost rushed my child to hospital to discover it was a pain response to.........a hair on their hand I initially didn't think about. I genuinely thought we were looking at broken bones or a bad sprain.
Hair moved,screaming fades into sobs. Once my child recollected themselves it was over. On with the day (until next sensory under/overload)

My child is now a preschooler, who is full of fun, lively and incredibly intelligent, kind and helpful as well as very well behaved. Often too well and doesn't cope well with a rule change, and gets very distressed that things are all wrong.

Seriously my child is more likely to pull me up on my behaviour or rather mismanagement than I am of theirs!

My child has tactile, auditory, oral, visual disorders. And has some ocd tendencies

My child can't tolerate bright lights,or too much touch particularly light touch. Can't tolerate swinging, can't tolerate dirt or hairs or fluff touching the skin. That causes huge huge distress and screams and 9x10 if there is a huge screaming outburst you can almost be certain you will find a loose hair on the skin. Even if you think you can't see one. Look hard enough and I promise it's there.

My child likes to grunt and hum and blow (sometimes unintentionally releasing saliva) can't eat chips or cake among other things without gagging. My child has now 19 food varieties most of which are soft peas...carrots....grapes....unbreaded fish.

My child can't tolerate loud sudden sounds and will cry or try to sound out the noise using their own noise and he flaps and swings and runs excessively he needs hard work for his body.
Those are just a few examples of our world. Child to child varies so hugely.

As a parent I would say it's not the parent that needs to see the relatives perspective as much as the relative need to be educated by the parent to the child's individual needs if they are to be involved. And that's it. Education and teamwork.

We do know the difference between a tantrum and a meltdown. We have been taught this and more by the therapists. It's our life,day in and day out.
But you can't discipline something that stems from a neurological problem where the brain and senses aren't coping. Only fix it.
You can discipline behaviour. And we do!

As a relative particularly someone with frequent contact then I urge you to ask questions about the child,they all vary so much.read as much as you can. Don't judge or jump to conclusions. Don't question or shout down their decisions regarding their child even if you dont get it,Learn the reasoning behind it.

If you work with the parents you will learn,just like they did to spot the signs and tell the difference between bad behaviour and sensory possessing and even foresee triggers. And learn coping techniques.

Be calm and patient and always offer support and bite back the judgments that may surface. Your child is having a tough time without worrying their own parents see them as a failure who is making excuses for bad parenting.

Sensory possessing disorder isn't bad parenting. It's hard and rewarding and the most menial task can sometimes require so much planning and consideration.

Look outside the box is the child with auditory problems screaming,yelling,banging......maybe you are talking too loud. Or TV too loud.

Was the child with oral spd ate dinner nicely to have a meltdown at dessert. Look at textures of the food.

The child with visual spd screaming in a heap? Turn the lights lower, pull the curtains. Offer sunglasses.

Remove or lessen what pain triggers you can.

Redirect unwanted behaviors positively.

Oral spd child Spitting? Give them a straw and cotton wool to blow around or a small bottle of bubbles.

Throwing,running,bouncing wildly? Make it appropriate....cushion "lilliepads" on the floor. Wheelbarrow walking,Simon says games and work those areas they are needing to feel the stress on. Running it's feet and legs. Throwing arms and shoulders and so on.

See the behavior and redirect it to something more appropriate but dont stop it completely.
Where you see pain. Ease it and offer comfort.
For a child who rejects cuddles and touch.don't force it,they will come to you when they are ready to feel that input. Let them know you are there when they are ready.

If you need to scratch an agonising itch,you scratch. Where it's not appropriate, you work to make it so you get that relief. It's the same concept for a child with spd.

As for discipline of genuine bad behaviour then it's just like I do with my other children. And I don't make excuses for it. Which for my preschooler is a time out. Older kids have loss of privileges.

Talk to your child and work together and in time you will be just as able to deal with things as they are.

And in a grandchild that's able,let them use their own voice too. Hear their side. Ask how you can help.

And as for people wondering how to offer help. Just go for it. Often they are more fearful of asking with a child that's not as understood or written off as naughty or have fears regarding how the child would be handled in their absence because in my experience mishandling a situation can very quickly undo weeks of hard work put in by us,our child and the therapist.

Have an open mind and heart and be willing to learn. It's very rewarding and when done right can build such strong bonds.

Sep 11, 2015
just found out today 9/11/2015
by: Anonymous

My 7 yr old gr dtr has SPD. Just beginning to look for info on how we can be part of the care. Thanks for the website.

Nov 16, 2013
Caring Grandmother
by: Anonymous

My daughter who lives in NY and is a single parent who's 15 month old son has been diagnosed with SPD. I live in MD. How can I let her know that I want to help her even though we live 3 hours away from each other. any advice would be helpful.

Oct 04, 2009
How do you handle the relatives?
by: Anonymous

Seems there aren't [m]any grandparents reading this blog. So how are you parents getting your relatives to a level of understanding of SPD in their grandkids, nieces, nephews? What do you do/say/write to them that gives them some more insight into why the kids need more than some "old fashioned discipline"?

Aug 29, 2009
Listen to your heart
by: anon

I have read many of the posts and recent replies. One struck a familiar chord - the child said his brain made him say/do things he didn't want to do. I know our little boy has said similar things, and he always comes back to say he is sorry after situations occur.

In a reply, a parent said they had some success with telling their child to "listen to your heart" when his brain is making him say something he doesn't want to/shouldn't say.

As a relative, I am going to try this approach the next time it is called for. Up until now, I have only tried diversion to another subject or area, and that only works when he is not angry or mad. Then its timeouts while he calms down and thinks about things.

Can I ask you parents out there to ask your relatives who are dealing with SPD kids to reply with their approaches? Most relatives would never find this site unless their SPD family parents told them about it. I think that anon responses from relatives who are having some success would help parents, too. It is difficult to maintain your equilibrium as a parent with this constant burden, and SPD looked at from another's perspective that does NOT have to deal with it constantly will provide insight, and maybe actually change some outlooks. Several parents have said that the most trying times are with relatives who don't understand. So send them here to read, and hopefully they will learn more, and help all of us, too.

Aug 26, 2009
Experience is what I'm hoping for here
by: Don (Ohio)

Thank you for your comments.

I believe that most relatives [of ours] believe that my grandson is suffering with SPD. But the symptoms are not as pronounced as those of many others with SPD. Which is why I added the comments about hesitancy on the part of some to question, somewhat.

The idea of talking to the OT is a good one, for those who need that verification and understanding. But there also is much info on the web, as you noted. Reading is good for starters, and provides the background needed. But there is nothing like experience from others in a similar situation.

What I'm hoping for with my post are more comments on specifics of how other relatives coped and what they did when there was a problem, and the parents were not there. If you have experiences in dealing with an SPD child as a relative without the support of a parent being there to take over when things look like they are approaching a point of confrontation, what do YOU do besides the obvious of trying to divert attention into a more positive direction?

And how do you do it?


Aug 25, 2009
by: Anonymous

Well in our case we decided that it would be best to setup a meeting between grandparents and our private OT. She is willing to sit with them and answer all of their questions.

I'm hoping this will help them 1). see that this is a real diagnosis and 2). feel like they are participating in his care. I think the best way to get people 'aboard' is to make them part of the team.

Our OT explained to us that while yes these children have a tendency to control situations, they do it because if they don't it may mean the difference of having to handle a hard situation for them. Example, my son has a proprioception problem, if his grandpa tosses him into the air it really bothers him. So my son refuses to stay with his grandparents because there is a chance he may get tossed up into the air if he does. This may be called controlling to some because we can't leave him with his grandparents which means no babysitting. Makes it harder for mom and dad. Others say, 'oh just leave him'. But it also shows the lack of understanding in the older generation (just stop tossing him!)

To me if someone wants their opinions/concerns to be taken seriously, then they need to be willing to read a book on SPD or talk to the OT.

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