Desperately need car seat advice for Autistic non-verbal 3.5 year old

[sakuramiyagi]

We are at our wits end and desperately need help.

My son has been rear faced since birth. After he outgrew his infant car seat, we bought Axkid MiniKids for each of our cars. He’s sat quite happily in them until last month. It’s as if a switch has flipped in his head and we cannot for the life of us work out why he doesn’t want to go in the seat.

Each car trip is fraught with stress. On a good day we can bribe him with a Colin caterpillar gummy for each hand and that distracts him enough to get him into the seat. But his meltdowns are becoming more frequent and more violent. We need two of us to go anywhere now as one person is not able to manage putting him into the seat and maintain his safety, if he were to slip out of the car whilst we try to seat him.

My husband and I have had to change our work patterns to ensure that we are both available for nursery drop-off and pick-up. This is obviously impacting us at work and financially. There’s only so much goodwill our employers will bestow upon us.

We now avoid going on outings for fear of the drama around the car seat. It’s just awful.

Yesterday’s nursery pick-up was genuinely the worst one ever. He immediately went stiff as a board and fought tooth and nail to not go in his seat. We managed to get him buckled in and I sat in the back with him. Our drive home takes 20 minutes along country roads. He thrashed so hard that he managed to escape the car seat despite me trying to hold him in. The straps on the Minikid completely locked up and were inoperable when we tried to put him back in.

In order to get him home, we had to sit him in the passenger seat next to me with him belted in with the standard seatbelt. We drove home at 15mph with our hazards on. Please don’t make me feel worse by sharing crash force data. I’m aware it wasn’t safe but there was no other option to get him home.

Clearly this situation cannot continue. I’m worried sick about his safety in a seat he partially escapes regularly during a meltdown. I worry about the stress of recurrent meltdowns and seeing his parents so upset and trying to force him to do something he doesn’t want to do. The stress of this is making us ill, on top of having a child who doesn’t sleep and dealing with the usual battles that come with being a parent of a child with additional needs.

I really want to keep him rear facing but at this point, I think we may need to try a front facing seat. This goes against everything I believe when it comes to car seat safety. However, I don’t see there being another option.

I’ve been up all night worried sick about today’s car trip. I feel like the world’s worst mother and feel so utterly hopeless at the moment. We are literally on our knees and so close to breaking point.

Can anyone offer any suggestions on seats that we could look into?

Are there any parents of ND children who have experienced this and found a solution?

Any advice you can offer would be great fully received.

Thank you for your help.

Are you anywhere near one of the In Car Safety Centres? They’re specialists, have lots of seats suitable for disabilities etc.

You are in a really difficult situation and you’re doing your absolute best to keep your child as safe as possible. If you forward face him now, you’ve still had him rear facing for longer than most people do. You dealt with yesterday’s emergency situation in the best way that you could. You sound like a great mother to me.

Do you know anyone with a suitable size forward facing seat who would be willing to help you with a test drive? See whether just forward facing helps?

Front facing is the safer option if the driver is dangerously distracted and the passengers are frantic.
We had DC1 rear facing til 4½.
Dc2 could open his straps (we tried everything to stop him, gadgets, non safety tested extra clips etc). From about 2. We HAD TO put him ff. He could climb out of his seat and would pop up between the two front seats on the main road. Terrifying. And we had the frantic trying to escape tantrums almost making him sick. I had to sit beside him and almost forcefully hold him in.
That was not safe.

So we got a cybex platinum. It has a big..
cushion... that goes across the child's torso. Keeps them safer and they can't slip out of it.

To add, my child is not ND but I really think this seat will be suitable. And you shouldn't feel bad about how you brought him home yesterday! It was your only option. You are doing your best.

This seat is suitable up to 7 years old. If he likes planes/boats you could call it a special pilot seat/Captain seat

(photo of seat currently under review!)

You likely need a front facing special needs seat. It’s madness for it to take both of you and eventually you’ll hurt him.

Mumsnet resident car seat expert @BertieBotts will be able to help I'm sure. How heavy/tall is your little boy?

You have my total sympathy - our DS is non verbal autistic & car safety is one of our battles.

Your son might not be big enough yet - but you could try a booster seat with the crelling harness in the future, that’s what we use for our son xx

First of all, emergency measures. Well done for getting him into a seatbelt when he was melting down. A seatbelt is MILES better than nothing, even though it would be better for him to be in a car seat. And nothing happened. Please don't feel bad about this - you did the exact right thing.

Could you maybe get a high back (Maxi Cosi do a folding one) or backless booster to keep in the car, in case of another emergency? Again it is not ideal, and probably wouldn't recommend this as his main seat unless it turns out it is the only kind of seat he doesn't melt down in. But it would offer you an improvement over the seatbelt alone. Even a backless booster is a significant improvement - you can also slide the front seat as far back as it goes, to increase distance from the airbag, and consider turning it off if it's easy to do that - it's often a key turn in the glove box.

If you do end up driving him just in a booster or just in a seatbelt, it is probably safer to drive normally as you will be more predictable to other drivers. I understand why you went slowly, but it's probably not necessary - I would just try to get home by the most direct route so you're minimising time on the road when he's in a non ideal form of restraint.

In terms of forward facing options, you have a few.

25kg harness R44 seat - Joie Bold R, Cozy n Safe Hudson or Cozy n Safe Excalibur/Puggle Safe Fit & Grow - these can use the 5 point harness up to 25kg. Cost about £100-150 depending on model. Fits using isofix, seatbelt and top tether. Do note to avoid the R129 type versions because they are usually limited to 105cm on the harness, whereas the R44 ones have no height limit.

Special needs harness seat e.g. Britax Voyager - these have higher weight capacity, but are much more expensive i.e. over £1000. You might be able to get funding somehow - I would ask on the SEN boards because I'm not sure how this works, whether it's through Motability or something else.

Special needs harness like Crelling harness combined with high back booster. Less expensive, around £200 per harness and you can combine with any booster you like (I believe) so you could look at things like Britax or Besafe or Axkid. The In Car Safety Centre sell these and have an advice service and I am sure there are other services as well which offer advice on these. He would need to be over 15kg and 100cm I believe. The harness itself is mainly designed to keep them in the seatbelt, rather than restrain them for crash safety.

Cybex Anoris as pictured above - that has an impact shield, rather than 5 point harness, and the Anoris has an airbag inside the shield as well which should inflate during a crash which helps support the head and neck. The crash tests of this are seriously impressive, but it's not a cheap seat - about £500/600 depending on the version - and it is limited to 21kg/115cm so doesn't last as long as any of the other above options.

Possibly something like Besafe Beyond? This is a 23kg/125cm limit rotating seat. So it can be rear facing, like the Minikid, but could be turned FF if he is struggling and needs that on a particular day. The downside again is the lower weight limit and the cost of it - it's about £650 because you need the rotating base and the seat.

If child is over 100cm and 15kg and is close to 105cm/18kg - a decent high back booster might be worth a go. It's not an ideal car seat at age 3.5, especially if he doesn't have the understanding that he needs to sit still, not play with the seatbelt etc. But OTOH any properly fitting car seat for his height and weight which he remains in is MUCH better than no restraint at all and you have to weigh this up.

Personally if money was no object and he has enough growth space to make it viable, I'd try the Cybex Anoris or the Besafe Beyond, but I'd want to try the Anoris out in a store to see if he actually copes with the shield because some children would find this too much in a sensory sense.

So in a more practical sense I would most likely end up with one of the 25kg harness R44 seats, and hope that by the time he reaches 25kg, he has enough understanding to use a high back booster correctly. If not, then readdress the Crelling harness / SEN restraint question.

OTOH if you are certain already that you will end up needing the longer term option eventually, it might be worth opting for that straight away, since they are pricey so you might as well get your money's worth.

Autistic (but verbal) child. We couldn’t use a car at all for the first 12 months (rear facing means he screamed until he went blue, threw up and inhaled...). Forward facing is safer than suffocating, so we went forward facing at 12 months.
A cybex seat with a crashshield worked for up to 10 minutes (but they are NOT escape proof). We can use a car regularly since he was about 7 years old.
Can you find a nursery/child minder that is closer?
Not what you want to hear, sorry

Thank you so much everyone for taking the time today to share your knowledge. BertieBotts especially for such an amazing breakdown of seats. I’ve got a notepad and I’m jotting down everything to investigate once he’s asleep.

Each one of you has restored my faith in humanity today. I had such a depressing experience on one of the Facebook car seat groups. It’s been so comforting that I wasn’t slapped with judgement. I’m already judging myself as it is.

We are going to (fingers crossed) try to get him to the biggest car seat retailer near us at the weekend to try out seats. The Cybex seats with the impact shield that have been suggested here look like a good possibility. We think he’s struggling with the 5 point harness and feeling trapped, not being able to see things.

BertieBotts - the emergency booster seat idea is genius and something we would never have thought of and I’m going to get one ordered tonight just to be safe. I cried all the way home last night and my poor husband was white as a sheet so anything that is better than just a normal belt would make sense for emergencies.

Everyone, I cannot thank you enough. We are obviously not out of the woods but I feel less lost and we have a plan of attack.

💐💐💐

Those Facebook groups are truly the worst and to be avoided. They really don’t help people unless you’re willing to do exactly as they say and that doesn’t work for all children.

Oh you have my sympathy OP. My dc3 is NT but she did the rigid thing when we tried to put her in her rf seat, and we couldn’t do a thing about it. I remember a stand-off on the pavement for 45 minutes at one point. You sound like you’re doing everything you can in a really tricky situation and I hope you find a ff seat which suits your ds.

In order to get him home, we had to sit him in the passenger seat next to me with him belted in with the standard seatbelt.
If he’s ok with this I’d just do this with a booster seat. Push the front seat back as far as it goes and consult your car’s manual as to whether the airbag should be on or off. Most 3.5YOs meet the minimum height to use a booster and yes ideally rear facing is safer but I’d argue that him being buckled and you being free of distractions is the most important thing. I don’t have SEN experience but I do have tall kids that are prone travel sickness and they were both in a booster at 3.5 and often I have a full car and need to put one on the front. Some times you have to make the best of what you have. If he’s often bribable with sweets maybe look for a seat with dual cupholders (we have HBB from Joie and a backless Graco that fit the bill) so he can have a juice and a packet of whatever within grabbing distance as a distraction. Emergency backless booster in the boot as suggested by Bertie is also a great idea. I always have one for surprise friends or relatives in my car, or to use for taxis, and they only cost about £25.

Also- not surprised to hear about your horrible experience of the facebook car seat nutters! They have a horrible reputation so please don’t be upset.

Good luck and I’m pleased to hear you’re feeling more confident with a plan of attack.