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

[nicki01]

Lindblum- I do think alot of It is frustration and lack of understanding as it normally happens when its time to come in from the garden, or sit at the table for dinner or bed time. I don't think she gets why she has to do these things and also doesn't want to but with her lack of speech can't communicate 100% to talk to me about it!

Rach Christ the king is another I need to call.
I did hear good things too about hill view but am not 100% exactly where it is. Will need to look into that this week I think. I think its redhill way but I haven't seen a school round there.

She had an amazing morning at nursery today, no outburst at all and co operated with everything which is music to my ears. I have been quoting to her 'hurting is finished, now kind hands' religiously, at the dinner table, when I put her to bed and when I drop her off.
When I picked her up I asked her if she had been good and she said 'kind hands mummy' so she must have remembered what I said when I dropped her off! I'm on cloud nine about that lol!

 

[essie0828]

Nicki that's adorable. "Kind hands mummy" She knew that would make you proud. Beautiful.

Sequeena try not to lose heart dear Numbers like that are hard to swallow, most definitely, but he's doing so much more now than he was when you started this thread. F the numbers and the gaps. I've seen so much positive change, even from afar. He will get there hun, just in his own way and own time. Keep up good work mama :thumbsup: I understand that it really is a kick in the gut though, I've just been through Hayleys 1 yr reassessment.

DD climbed/fell out of her crib for the first time today. Luckily she was unscathed. Little thing didn't even whimper. It's a bit of a happy milestone really. We have always heard people say "Just wait till she can get out of her crib." but that time never came. Then after her diagnosis we understood why. Now it has finally happened Am I a weirdo for being happy that my daughter moved well enough to fall out of her crib? I hate that she fell but I'm so damn proud she climbed up to do it

 

[Quackquack99]

I had a bad day at nursery yesterday. I had a look at an assessment they did of summer and atm they think she is currently in 16-26 months for pretty much every area. How do you ladies stay so strong? I cry just thinking about it.

 

[nicki01]

We don't stay strong quack, well I don't anyway!! I still crumble all the time, have good days and bad days. Yesterday was a fab day where I could forget about it all, Charlie was on top form, but its was after a week of a massive low.
I'm sat outside the dentist right now, Charlie has an appointment in 30 minutes, fingers crossed she is a little star!!

I can't say it gets any easier to see that they are behind on development you just move on from untill the next time!

Charlie has another parents evening in November where I will see te latest report and I'm hoping it will be much better than the last as I think she has come along way since the begining of the year but I could be shot right back down again I guess!

 

[RachA]

Essie-I'd of been proud of that too

Nicki-yes Hill View is in Redhill

Quack-as Nicki said we don't really stay strong. Every time I think of Esther at school I want to cry because I just can't see how she's going to learn anything when she can't even talk well. But I don't because if I do I'm scared I won't be able to stop and I've got Daniel to look after too. I think you just get to a point where you cope. I know it seems bleak but the range if 16-26 months covers a lot and what the form doesn't show you is where abouts in that range they are.

 

[annanouska]

Nicki it was nice toured your post as its reassuring I'm not alone Marcus behaves like that with me.he caught me so hard in the wrong bit head butting me in bed the other morning I blacked out his new one ismtompull my hair then sink his teeth into the top of my skull

I've been told it may be language/communication frustration, a way of dealing with emotion or a sensory input he mainly does it to me tho same as u once he went for key worker. I wonder if that is because she replaces me as such when at nursery.

We have been told he has disordered language ATM. He had his ADOS but he scored well as he has great eye contact but he will still get a team review.

This is the picture so far...
- epilepsy now under control
-about 10 sing words and 3 random long sentences yet he can't say mummy or drink etc?!
- aggression
-social avoidance but happy to be in same room as other children now
- spins
- licks, Stims and chews ( they say this is his sensory processing)
-obsessive over routine
- obsessive over lining his things up and you can't touch them or move.

I really feel he is on the spectrum but he does have great eye contact and laughs etc. they don't seem to want to commit to that yet xxx

 

[nicki01]

Our LOs sound very similar, Charlie went for her SENCO on Monday as she is like my replacement in nursery, I think they do go for those closest.
Charlie started singing and had repetitive sentences before she started to talk, about 6 months before she would sing and pick up nursery rymes really quick yet couldnt talk! And she has only been calling me mummy for about 8-10 weeks now.
She also avoids social situations but will happily play in nursery where there are other children, only in the last few weeks has she started to acknowledge the other children and that's only on a good day.
It must have been scary to black out! Charlie is so so strong, I can't keep a hold on her when she flips, and struggle to get away once she has me in her grip.
She decided to show all the expectant mums and snobby turn your nose up mums in mothercare what a meltdown was today!! That was interesting to say the least! Heard the staff say if she doesn't get control of her soon we will have to ask her to leave!!
She wasn't hurting anything or anyone, ok maybe their ears but no damage was being done, I was just standing there holding onto her reins whilst she had a freak out on the floor, I made sure she was away from people and shelves, if I try to stop her it prolongs it so I just have to stand and wait for her to finish herself.

 

[sequeena]

Thanks for your support everyone. I'm sorry I'm not around but I'm still feeling really sensitive and upset. Hugs for everyone x

 

[annanouska]

sequeena your little Thomas is such happy and beautiful boy. I know its crappy right now but u will get there, look how far you have come. Do ty those sleep people, they sent our "programme" it's so cut he has a social story about sleep and a special digger reward chart etc. it as just nice they really tried to fit around his likes etc.

I would have had to say something in mothercare, that would have really got to me. I try to move him if he's having a meltdown somewhere safe a quieter if I can even just the entrance bit in the corner but that's because he goes on more witht all the hustle around its too much sensory for him xxx

 

[DHime]

Hi not sure if i introduced myself on here...... i have been following you all. My son has many issues and his asd eval is in 2 weeks.
He has multiple birth and medical defects so i understand the daily battle to not cry and scream. Many ask me how i do it...... lol i have no choice do i?
What are you all dealing with? Just want to get to know you all.....

 

[annanouska]

your little man is just a couple of weeks older than mine. Hello and welcome. My son has sensory processi g disorder, language disorder, epilepsy and is ongoing monitoring for autism. We are currently I. A really good place but I know how quick that can change. I sometimes feel a bit of a fraud as our needs are not as great as some others on here but everyone is very kind x

 

[Vampire Mom]

Mind if I join?

Hannelore has seizures from drug exposure in utero (why it took so long to strip parental rights gets me in a lather.....), plus Noonan and Ehler Danos. With all the fun extra disorders that go with NS and EDS.

No intellect delays but some delays in ability to express herself. Verbal was starting to catch up but took a hit with new medication for seizures. But we'll take that over two or three seizures daily.

Motor delays are about 12-18 months delayed. Not quite walking unassisted yet, getting there slowly. Has KAFO if we're working on standing and walking, wears AFO if I'm just letting her crawl around at home. PT says that's fine, so some days aren't worth fighting. The hypermobility just isn't helping. Starting to think a wheelchair may be needed, but no one has said yes or no really. Right now, she gets around fine at home and stroller or carried out on the town.

 

[RachA]

Hiya and welcome to our ever expanding little group. Sounds like you have a lot going on with your lo.

 

[sequeena]

Hello and welcome DHime and Vampire Mom

DHime we don't have a choice... this is our norm... imagine our life if we did not have all these extras! It is normal to feel overwhelmed and frustrated

Vampire Mom my son got a wheelchair a month ago and I can tell you it has made SUCH a difference to our life. Before the wheelchair we had to carry him everywhere as he is too big for pushchairs and isn't safe in them. The wheelchair has saved my back for one but it also allows him to interact with the outside world safely and he has started deciding himself when he wants to walk and when he needs to rest.

My LO also has hypermobility syndrome (hyperflexible in pretty much every joint), hypotonia, hypoplastic thumb (from polydactyly), Global delay of 2 years, sensory, behavioural and sleep issues. He also has a few other medical things with his eyes and such. He's just been referred to genetics and it's very likely he has EDS joint hypermobility but he also has markers for other syndromes so we're just waiting.

I'm not sure where you are Vampire Mom but this is Thomas' wheelchair just to give you an idea of what your LO may get in the future. We're in the process of getting a head rest for him.

https://www.specialistwheelchairs.co.uk/sites/default/files/2p_k-junior_eu_page_2_image_0006_page_3_image_0004.jpg

Thomas' brakes are on the wheels though not the handle.

Thomas has Portage tomorrow afternoon and as usual he's still wide awake. Honestly child sleep!!!!

 

[sequeena]

Hahaha I just read one of my first posts in this thread (OMG can you believe we've been chatting for over a year??). I wrote that Thomas' development was the same as a 1 year old.... his development is still that of a 1 year old he just got older chronologically. Not sure what the point of this is but in a really weird way it's made me laugh!!

 

[Vampire Mom]

We're in the US. The NS means she's a tiny one, so she's easy to carry. But since I'm high risk, I can't carry her. She happily gets into her stroller however and we go with that. Plus if she gets help, she can walk a bit. But the gross motor delays of NS with the joint laxity from EDS means walking will probably be a challenge always. Just got a new van, she crawls to the door, I walk her to the van, she pulls herself up to her seat. Out, she pulls herself to her stroller and we zoom off.

PT is hoping she can get walking since she can stand with support at a table. But we're starting to say that she has limits right now.

But she's perfect no matter what. Even if she somehow picked up my bad language. Oops.

 

[Vampire Mom]

Well, the appointment today was interesting. Her walking issues are because her hips over rotate. But she's not a good surgical patient so not much we can do. Need to see Dr F for more advice. She's the one who first suggested a wheelchair.

Logically, I know if her joints aren't stable enough to support her, she needs a chair. But it sure feels like we're giving up.

 

[essie0828]

Hi ladies Hey you new girls Vampmom where are you in the States?

Well ladies I have a whole bunch of crap on my mind and naturally I come here first So the long and short of it are: I think my husband has EDS. I think this(along with other factors) influences our high miscarriage rate. I am bitter and our relationship is rocky, in part(again other factors) because of this. Wow! There I said it. Brutally honest. I will never say that to him but I really do think it. I have loads of evidence. He matches every diagnostic criteria to be diagnosed with it here in the States. I'll try to post a good link supporting this at the end. He even agreed and demonstrated every damn hyper mobile "stretch". He got the highest score on that, hyper mobile in hands, ankles, especially knees and back. He's Stretch Armstrong! It's crazy! Of course this is not new to me. He's a boy from the same rural town as me, born and raised, went to the same high school. Married as teens, I've seen him do things, bend and stretch. He can pull his skin away from his body in areas like I've never seen anyone else do. His buddys' are always like, " Hey, do that (random gross thing), and everyone loved it. He made it funny. His eyes are almond shaped, very much, and they slant (droop if you will). His medical past is complicated. He was completely disabled as a kid, up until we shacked up. He got a job, got way stronger and had fewer problems. His mother is a strange one. She doesn't like to tell me about his health issues as a kid. I have pushed the issue and got very little. I'm convinced he was misdiagnosed with JRA as a kid and his problems with his joints were from hyper mobility. I do keep in mind that these are relatively new syndromes and genetic testing just didn't happen back then. Yes we are old . I think we need to have genetic testing as a family. I have no clue how to go about that. We have been very careful to avoid pregnancy since the mc in April. Blah, that in itself sucks. I kinda want another little one. I think he does to but we are falling apart. DDs issues, his issues, my issues, lol, we are just stretched thin. If you have read all this and not fell asleep I would be suprised. Thanks for letting me get this crap out in the open. And now for that link.........

 

[essie0828]

https://taurina.deviantart.com/art/Useful-to-help-diagnose-Ehlers-Danlos-Syndrome-377584559

 

[essie0828]

His Beighten Score was 8/9. He met both major criteria and several minor criteria, especially when he was younger.