Developmental disorders/learning disabilities/genetic syndromes & more support group

[essie0828]

Aww I tried to change my avatar and its sideways

 

[Feathers]

We're in the same boat. My LO is 23 months old and had a very difficult birth and a hard start in SCBU and has always been behind. Fortunately we've been supported by a wonderful consultant from day 1 of her life who has followed her through feeding difficulties and breathing issues.

Now her main problem is developmental delays (6-9 months behind in over half the areas of assessment) and we've just had our feedback from the big multi-disciplinary assessments with various agencies and found DD is being referred to Inclusion, portage, Speech and language therapy which will include Makaton signing to help her communicate. It's hard to absorb (and I work in education so obviously it wasn't a massive surprise- but harder being on the other side of that meeting) when they talk about getting one to one support in for nursery to help her. She doesn't seem *that* bad to me. Obviously she is speech delayed and has a few...well red flags for me in terms of her behaviour, but nothing terrible so I am surprised at the level of support offered. But in a very good way.

We're waiting on an MRI scan now to check for brain damage which all sounds very worrying even when we're trying to be positive. She's such a happy and friendly little girl and a diagnosis doesn't change anything. But the side of me that *knows* how it affects your future is definitely worried.

Anyway, that's my babbling story. well done if you stuck through that!

 

[sequeena]

Oh no essie! Poor girl yes I wouldn't be surprised if she's had a fair few. T has had a load, most have cleared up without antibiotics though so are not 'on the system' as such. Hope she's better soon I love your new profile pic she's gorgeous!

Thanks Thomas is generally a very happy child, which is why it's so worrying when he turns violent! Today he slammed his head against a shop window because I couldn't pick him up (I'd bought lots of last minute birthday bits ready for tomorrow).

Feathers sounds like our children are quite similar. Thomas is 8-14 months behind in development depending on which area you focus on (speech is his worst too). Really hoping her MRI comes back ok and the delay is just one of those things and that she soon catches up.

What is inclusion? We're also waiting on portage. T already has a speech therapist and will be going to group sessions soon without signing as they don't believe he can handle it. I need to write to his paediatrician too to get him referred to a neurologist (well hopefully, it's her call!).

 

[essie0828]

Hi Feathers It's great that she is getting intensive therapy so early. With anything neurological, sooner is better with the kiddos. Their brains have amazing capabilities to reform connections. I'm still dreading that talk where they sit you down and tell you that your kid is different . I know it's coming though. So what are some of your DD red flag behaviors?? Does she walk yet?

Thanks Sequeena!! She's my beautiful princess. Thank God she looks like her dad
Had a callback today from First Steps. They are sending Hayleys paperwork on through for further evaluation. I'm happy she's finally getting help but really sad that she is that behind. The evaluator said on the phone that she was delayed in all areas especially gross and fine motor. Still working on the ENT referral. It's like pulling teeth to get them to write out one

Hayley will get a little violent as well when she is frustrated. She will pinch, bite or hit. Oh and pull hair. Ouch!

Happy Birthday T!!! The big TWO! Hope you all have a wonderful day. Let us know how the occupational therapy goes.

 

[sequeena]

It's hard to take in but they will get there with help

Well I've set everything up ready for the birthday boy, I cried my eyes out when I put him to bed. It was the last time I held my 1 year old

 

[Feathers]

Sequeena- Inclusion is the special needs education team who go into schools and nurseries. They will go in to her nursery and provide support and training for the staff to ensure she gets appropriate targeted care. They also sort out 1:1 support for children who need it in educational settings and basically will follow her through nursery and school etc as long as she needs it. They also provide funding for things. The team told me that as a child with special needs she will get 15 hours of free nursery education from the age of 2 which they will help sort out. (Even though we are usually entitled to nothing lol). And a big happy birthday to your little one!

Essie- yeah it is hard to hear for any parent. However much people tell you that they are who they are, no-one wants to hear those words. But in some ways it is so much better to get the help they need. It's much more difficult to get these things when you are school age referrals. She has only been walking for a month and did have some physio input (her legs and feet are too bendy we found out during that time!)

For me her red flags are her extreme obsession with a few things. She can sit and play for up to an hour alone on something she likes. With no input from me.
Everything has to be done a certain way. She can sometimes be over friendly to people, and other times ignores people entirely when her mind is fixed on something. Just generally when I watch her...in an older child I would be putting in a referral (in my job) for Autism checks. But she is a little too young for that kind of diagnosis yet.

 

[essie0828]

Feathers that's interesting that you say her legs are too bendy. Hayley is the same. She also walks exclusively on her very tip toes. The child can stand like a ballerina for several min while playing with table toys. Then sometimes she will stand almost on the inside of her ankles with the soles of her feet pointing out to the side. It looks pretty scary. My daughter will also play alone for long periods with something she likes. Cardboard books mostly but she will also let me engage her with something else or she will stop flipping the pages and wait for me to read. But will flip pages and explore books for over an hour sometimes. Thank you very much for sharing some of the things your daughter does It helps me to watch for things in my DD and I appreciate that.

Happy Birthday to Thomas! He will be so happy to see all those pretty presents! Gotta share a pic or 2 Lol no wonder you couldn't pick him up the other day, your arms HAD to be stuffed

Hayley is feeling a bit better today. Her nose is congested something awful though. If she feels up to it today we are going to have a little family outing Dh got the day off

 

[sequeena]

Thank you for the birthday wishes girls. Unfortunately T will be having surgery again in the near future. His thumb has become so loose he runs the risk of loosing the use of it completely. Unfortunately there's a risk that when they do the surgery they'll make his thumb too stiff and he will again lose the use of his thumb. There's a slim middle ground so I hope to God his plastic surgeon gets it right.

Along with the possible grommets surgery I am absolutely devastated. I wanted to avoid this, at least for a few years

T has a few red flags too - hand flapping (and making odd shapes with them, bit like sign language but not if you get what I mean?), he's extremely over friendly and can also play by himself in his room for a long time.

Sigh. I wish this would just go away.

 

[essie0828]

Sequeena. When will they be doing the surgery? And possible grommets, will they do them at the same time? I hope everything goes well.

 

[Feathers]

I'm sorry to hear that. Hopefully they will get it right for him and don't keep you waiting too long because sometimes the worrying and waiting is the worst.

 

[sequeena]

The possible grommets surgery would be the end of this year or the beginning of next year. Hos surgeon said he wanted the thumb surgery done asap so within the next few months I should imagine.

Well for the first time ever T made a little friend who wasn't his cousins

 

[essie0828]

Awww, that's so sweet that he made a new friend.

Hayley goes to the ENT specialist next Tuesday and the referral was for grommets. We call them "tubes" over here. I'm concerned as I don't want her to go through surgery either. It's really hard to weigh the potential pros with the cons of getting tubes.

 

[ellismum]

I just want to pop in and give you a big I have no advice, as you know I'm working through the problems Ellis has and I hope some of the advice I received helps you

 

[sequeena]

Sorry essie I've only just seen this, hope the appointment goes well!

Thanks Ellismum xx

T just won't sleep I'm at my wits end with him. He has trouble staying in sleep cycles and wakes 1-2 hours after being put down.

 

[essie0828]

Hi ellismum How's your little man doing?

Sequeena that sounds like torture and I'm right there with you. Hayley isn't sleeping either. I think her ears are bothering her but she is waking ever couple hours. She actually woke up and asked for a bottle at 3am yesterday She hasn't done that in a long time. Took till almost 6 for her to fall back to sleep. Is T getting cranky from waking so much??

 

[sequeena]

Oh no what a nightmare yeah T is cranky because I won't let him sleep past 8am. I'm slowly being driven mad. Last night he screamed and screamed so I gave in and brougyt him into our bed. He started babbling!!! I started crying. It took ages for him to go to sleep.

 

[essie0828]

you poor dear. It's almost like having a newborn again isn't it? Lol, and to think DH and I are considering another one : wacko: HA! Hayley has been napping more during the day so I sleep then. She usually goes back to her schedule in a week or so. Do you know why Thomas is waking?

 

[essie0828]

Lol. We we're up at 3am and at 6 last night. It's almost 7 and she's not showing any sign of sleeping. Tine for a HUGE cup of coffee.

 

[essie0828]

Ughh I can't type this early. Lol.

 

[annanouska]

I wrote a huge post and the iPad ate it so forgive me if tis is a bit rushed! Hello I've been reading your stories and wanted to share about us.

Lo is 13 months, can't stand or pull to standing we are awaiting physio for this. H can babble but can't say any words, doesn't follow commands eg wave ( he can wave tho) and he doesn't like interaction with big groups much. He's happy playing and crawling around on his own he does smile and make eye contact. He drinks from a sippy cup free flow on his own but can't use cutlery.

He hasn't officially been diagnosed with anything yet but I'm becoming Increasingy aware he is quite slow at developing than others his age. I know they develop at different rates but I'm shocked at the prejudice I've witnessed even t my son who appears "normal" (sorry). I don't feel he has major issues but undo feel something. Isn't quit right but noody wants to listen.

I used tomworkmwith special needs children and I think I'm on high alert all the time.

Btw...t needs a little hat he looks like the milky bar kid in his pic its super cute