Please can SOMEONE help me?

[HalyardHitch]

I have no idea where to start. I'm lost, confused and worried.

My eldest son has been tough since he was born. He was a sickly newborn. Nothing major. Breathing and feeding issues. He had an infection but only spent 36 hours in special care.

He had cmpa. Lots of colic type behaviour. Lots of low level illness. Excessive sleep. After weaning he had an awful awful infection.

We paid a small fortune to see a private paediatrician and he carries the coeliac gene. He has been gluten free since 10 months so we're unable to test him. He has had many coeliac symptoms.

He was a "cause for concern" at his 12m and 2y health check with the hv. He does gymnastics- they have concerns. I have qualified for sure start support.

Preschool are now saying they have concerns about his gross motor development. He's wobbly on his feet and things like pouring, he finds challenging. They want to call in an inclusion manager from the council to support.

The NHS paediatrician whom we are now under has concerns about his growth as he's dropping centiles on his height chart (98th to 25th since 12 months old.

He also urinates vast quantities every half hour or so and eats very frequently.

The optometrist has now said he has poor vision in one eye and both eyes are squinting.

No one, apart from preschool, seem to be recognising that this is a global issue and it all must be linked.

I don't know what to do or think. Or where to turn.

Is anyone able to offer some advice?

Sorry, he's currently 2y10m. My other son is 1y10m and doesn't have the same issues.

Anyone?

Does your area have an early help programme? It’s worth a google to find out.

Nursery should definitely get a specialist teacher or the LA SENco in for an observation. This may trigger a few things to happen.

What did the paed recommend for his weight loss? Is diabetes a possibility given the frequent urination?

He had a diabetes test about a month ago due to concerns from preschool, which gp then agreed with.

Paediatrician wants him weighed in Jan and us to call him if he drops any more. Then back to see him in April. I just feel that he'll be 3y3m then and time is slipping away to get intervention before school.

I'll google the early help programme. Thanks.

I've been saying since he was born that we have an issue and I feel like I'm failing him

You’re not failing him because you’re identifying issues and asking for help

I would ask the nursery to get someone in ASAP and get them to specifically ask for a recommendation on next steps.

I would also take a list of your concerns to the GP if you haven’t already.

Does he have any behavioural issues or is it just the physical ones?

I see behavioral issues but preschool say he's fine. Apparently he's happy, polite, shows good concentration (although gets distracted). They say we should encourage him to use words instead of just crying.

We see meltdowns and violent/impulsive behaviour towards his brother. I think all cognitively normal. He's a very emotional child though.

We've been working on things with him and he has improved. So maybe the behaviour was just poor parenting. I don't know

I've booked a gp appointment for Tuesday.

My understanding of the early help stuff in my area doesn't seem to suggest we would qualify for additional intervention

I'd ask the pre-school to get the specialist teaching services involved with a view to further assessments. My son had similar issues with balance, motor skills and an awful birth which resulted in terrible reflux and gut problems. By 3 yrs old he was diagnosed with Autism, by 4 he was diagnosed with severe hyper mobility and then sensory processing disorder. All of this took its toll on me, endless meetings and reviews.. it if I didn't jump through those hoops my son wouldn't get the support he now does. Make your voice heard and don't give up being heard until they listen! Hugs xx

There’s a book called The highly sensitive child. I’ve not read it but it might be some help.

I hope the GP can help. It’s really tricky when they’re little because the range of behaviour is so great.

It's so difficult when your little one is a bit different from those around but you can't quite put your finger on why.

My eldest us now 16 with an Autism (and lots of other things) diagnosis since 6, but I remember all to well the bewilderment of those early years with lots of professional people suggesting things weren't quite right then being sent away to wait and see.

Another area you could explore is applying for an Education Health Care Plan (EHCP). Whilst you have no diagnosis at present you can show multi professional involvement and part of the EHCP process various professionals asses your child and write reports that can help you establish the best way forwards for the next twelve months until next EHCP review. If you Google EHCP on your local council website there may be some information.
There are two areas that I break things down into one is the appointments that lead towards diagnosis and these lead towards access to services and then there are the appointments which skill you to help improve things for your DS.

Two services which helped skill me in the early years and subsequently that may well be valuable to you are occupational therapy and speech and language therapy. In my current area there is an additional needs health visitor who can open this door. Some areas they're accessed via the GP then peadiatrician. You coukd phone direct and ask how you get a referral if you think it could be relevant.

Occupational therapy can teach you small daily routines to help with motor skills both gross motor skills (big movement like walking, jumping, catching a ball) and fine motor skills (things like being able to pinch, hold a pencil, hold utensils, ultimately have neat hand writing) it amazed me how fifteen minute focus each day on each of these areas had big improvements. Lots of Lego, play dough, cookie cutting, sitting on the floor with legs spread in a V and rolling the ball to each other then bouncing the ball etc. Trampolining was another thing that helped. DS1 has dyspraxia and doesn't have good natural muscle tone so still needs daily OT.

Speech and langauge was something I was rather resistant to at first. DS has always been a good talker. However speech and language is about communication, reciprocity, emotional response, understanding those around us. It's so much more than being able to say words. If your son is getting emotionally frustrated and crying helping him learn to verbalise his emotions/ frustrations should make him happier.

The book The out of sync child has fun has lots of ideas for improving gross and fine motor skills. The Hanen books are good for Speech and Language. YouTube is also a great resource.

We have struggled to find a good, private SALT in our area but we have a good private occupational therapist who sees ds fortnightly at school. He has made a lot of progress over the last year and a half with his school’s help under her direction. Ds wasn’t given any NHS therapy.

Thank you all. I'll look into everything you've all said.

I'm feeling pretty down in the dumps today. My boy is so SO hyperactive and I find it really hard to keep myself emotionally regulated when he's pushing my buttons so much. He's unresponsive to a lot of behaviour management strategies in have including the gentle parenting type ideas. I'm just starting to face up to the reality that this is my life.

My husband is good with the boys but finds it hard to be emotionally supportive so I feel very alone.

Do you have any other family or friends nearby that can support you emotionally?

Have you ever looked at changing his diet? I’m not sure what scientific evidence exists but you do hear parents saying that dietary changes have worked wonders for many tricky behaviours. Depending on his current diet you could try reducing or cutting out gluten and/or sugar. We couldn’t do this easily as ds’ diet is very limited and about 95% gluten!

The toddler years are tricky, especially so if there are other issues going on. Right now you’re in the thick of it with two under three years old but things are likely to get better so hang in there.

My friends are fab but I have no family locally.

We have cut gluten out of his diet 100% and sugar is massively limited. He has fruits but we strictly regulate any dried fruit and grapes. He has a pretty good diet - we find his health to be really poor when he doesn't have a good diet. and he's like the tasmanian devil when he's had any sugar

12 month age gap. I work evenings. Have minimal childcare and my husband is away 2 weekends a month thanks @openupmyeagereyes I really hope it will get better. I don't think it would be too bad if it wasn't for ds1 seeming like he has additional needs. I still need to take a pushchair out for him as 1) i cant control him. 2) he gets tired easily

I think that’s ok. Do what you need to to make things easier.

It’s great that nursery can see at least some of his difficulties and are being supportive as that’s a large part of the battle. There are so many parents who struggle to get help because the school sees ‘nothing’ wrong.

I just feel such a failure because he's still in a pushchair at nearly 3.

Preschool are fab but they say his meltdowns are down to "habit" and I need to say "talk to me...use words..." Easier said than done. I've always done that and it hasn't helped

I think the old mumsnet saying 'what ever it is, it's a phase ' is a good one for today. This isn't the rest of your life. This is a particularly challenging and exhausting phase.

You are trying all the doors to see which ones open for you. I remember metaphorically feeling like I was banging my head on each of them. It's hard to stay motivated when so many feel locked. But if you keep going you will make headway.

A diary of behaviours can help you plot the challenges and look for patterns. It also acts as evidence to go through with professionals when you do manage to open a door.

I think when you have a challenging and different child you almost need to mourn the future plans and fantasies you had for how life was meant to be. Then you can start to make new plans from where life is.

When DS was 3 he was in a pushchair too, actually he still used one ocassionally at 7. I've developed thicker skin (most of the tine). We couldn't get out to the local shops without major drama. More than once he emptied shelves by kicking out and being overwhelmed in the cramped isle waiting in the queue. My XH walked out leaving me with DS1 at 3 with very high needs and DS2 was 1. Roll on a few years and I remarried, a few more and I had a DD, a few more still and I set up my own company. Not something I ever planned to do but life is very different to what I thought it would be.

This last year we went to Lapland with the DC. We did things like dog sledding, a rendeer treck, visited disney movie wolves, lots of conventional sledding and trying interesting foods. 10 years ago Id never have dreamed we'd be doing that. Had foodbanks existed near me thats probably where id have been visiting. If DS1 hadn't of been DS1 I wouldn't have learnt to be so damned independant and organise every last detail of our holidays. We did lapland for less than most people pay to go to eurocamps. Likewise the year before we went to NewYork. It took some organising go coordinate things so DS1's needs were met. Because he's querky we do things at a different pace. Grand Central station at 8am on a Sunday morning is almost empty and breathtaking. If we had been a more conventional family set up we'd still have been in bed. The ferry to Staton Island is very quiet first thing and being our quirky family ment not only were we almost the only people on board, the captain came down and chatted to us about the area, the statue of Liberty, the people, the tides and the weather. It was like a luxury private tour for free - because we do things differently.

We find restaurants can be a bit of a challenge but built up from just going out for pudding. I travel with emergency familiar foods.

My point is our lives have gone in a very different direction to what I thought life with family was going to be. But different doesn't have to be bad.

Your development pace maybe different to that of your DC's peers but life will change. One of the mantras I was taught early on is to pick your battles and choose your challenge. So don't fight all the time and choose something that is currently most frustrating and tackle that.

It can be anything like lack of you time. Even 2 hours a week can make the world of difference to your sanity and composure to cope with what ever is thrown at you.

You really sound like you've got this. You're doing the right things. Just keep going and keep going and then keep going some more and you will find a corner to turn.

Don't feel bad about the pushchair, you need it to manage, and so does your DS1.

Re verbalising instead of meltdowns ... well, from what you've written it seems your DS is more explosive with you than at nursery. That's v common with additional needs. However you could try verbalising FOR him during a meltdown, whilst using simple Makaton signs. Eg your DS is melting down, you make an educated guess about his emotion and you get down to his level and say "DS is angry (whilst making sign for angry) ... angry ... angry." Then narrate what he is doing, eg "DS is kicking, DS is throwing ", "Mummy is here, Zmummy is with DS , when DS is ready Mummy will hug him" (that last bit is probably too wordy but you get the idea).

Then later during a calm time and in a different setting to where the meltdown happened, review what happened with him and narrate it again - "earlier DS was kicking and throwing. Mummy thought DS felt angry (sign it) - were you angry? What did you want?" Sign for what do you want (I usually just do raised open hands).

Then at next meltdown, ask "DS what do you want?" While doing the sign.

Don't expect to see instant results, you'd have to do this for two weeks.

With my DS we found using simple signs for emotions to be v powerful and helpful, even though my DS is incredibly verbal! The signing seems to be processed quicker and helps connect. Good luck

@MapLand that's really interesting what you say about the strategy for meltdowns. Thankyou. His aren't particularly explosive. He will just scream and cry and continue that for upwards of half an hour he used to do more than an hour. I don't particularly understand the emotions linked to his meltdowns other than being purely overwhelmed.

We do have tantrums but they seem more manageable somehow. They are shorter lived and done but they are somewhat explosive- I think really as a normal toddler tantrum should be - although I can't be sure.

Maybe I need to be more specific in my descriptions to any agencies

He has done bsl sign previously. He was amazing at it about 200 signs by 19 months I might start signing with him again.

I've been chatting to dh today about accepting the cards we've been dealt. We've decided not to go to the school church service today as it will be too much for him