Special needs mommy's :)

Hi Folk,

I haven't figure out a quick way to invite people all at once. And even though I am the creator and monitor of the group, even I can't find it through a search. So I am copying 1 name at at time sending individual invites.

I got through page one and will do a page a day until I catch up.

If someone would like to become co moderator, we could split the list up and it would go quicker.

I would love to join.

I have two children, one typical, one atypical

My eldest has just turned 4, she is the atypical one, she has global development delay, a speech disorder, and other various things, we are waiting for tests and diagnosis, but they are slow and don't want to diagnose here in the UK so early. We are trying to get her looked at to see if she is Autistic too.
On top of that she has mobility issues and we are trying to get to the bottom of that too.
We are sorting out her statement for school when she starts in September for her to have 1-2-1 support

Its so hard work and you all know, not just physically but mentally and emotionally, and this has complications on my eating etc

I am a special needs mum too - my son is 7 and was diagnosed a year ago with Tourettes Syndrom and ADHD - he is a delightful little boy most of the time, but it can be stressful at times dealing with his tantrums and his down times when his Tics are really bad. I am an emotional eater so has played havoc with me trying to eat healthily but I am struggling through. My son is on medication and hopefully the change in medication we are just going through at the minute will help things.

It is difficult for others to understand the situation when they do not actually experience the problems raising a child with special needs has - I think it is great to have as much support as possible

my son is called matt, he is 12 and his official diagnosis is

adhd
odd
conduct disorder
tantrum dysregulation disorder
childhood bipolar
anxiety disorder
dyspraxia
autistic spectrum disorder
and abandonment issues

we get little to no help, have to fight for every ounce of support we do get, i've had abuse from parents of "normal" kids because my son doesn't understand normal friendships, personal boundaries, or social situations. we have a fight every single day to get him to take his medication, take care of personal hygiene, or cooperate in any way.
i also have a 4 year old son and two daughters aged 13 and 1, there lives are made hell by matt who is highly violent towards his older sister and very domineering to his younger brother, so far he is leaving his youngest sister alone but we constantly worry for how long this will last
i have to be on call 24 hours a day, school phones at least once a week unable to cope and wanting me to pick him up, due to this i have found it hard to either find a job or hold one down, so now im a stay at home mum.
fortunately for me i have a wonderful support network, my family (after years of not realising how bad it had become because i hid it well) are really supportive, often giving me a couple of hours respite from him or giving the other kids a break by taking them out for a few hours. my friends although they dont fully understand what i go through, listen to me vent my frustrations and offer any support that they possibly can.
mine and matts biggest support comes from my husband who is matts step dad, he has raised matt from him being 4 years old and goes to every single appointment with us, treats him just like he does his own, unfortunately matts real dad is a complete waste of time, after having nothing to do with him from being 18 months old (we seperated when matt was 12 weeks old, divorced immediately, and he dropped all pretenses of wanting to be a dad soon after) matt got in touch with him out of curiosity in november, i explained matts difficulties, told him if he wanted a relationship with matt i would help him in any way i could, but by the beginning of march he had gone again leaving matt in a worse state than ever
i take my hat off to each and every single mum (or dad) on here who has a special needs child

He also has like little tics, he will shrug shoulders without realising or blow raspberries without realising, and does a little dance when excited, he doesnt display this behaviour at school, most of his eccentric behaviour comes out at home and not school.

It sounds like he may also have Tourettes Syndrom, it is worth checking that out too - my son has Tourettes and ADHD and it took us 3 years to get him formally diagnosed.

I hope things get easier for you - and it is definitely worth getting formal diagnosis even if the school do help out lots. You can then get extra help from the Council, and also possibly DLA - its definitely worth going for.

Hi, I'm Diane,

My son Benjamin is 12 years old and has the development of a 2yr old. To this day I haven't been given an official diagnosis, I'm told the fetus suffered brain damage during development and therefore he has severe global delay. He is non-verbal, has epilepsy and is in a wheelchair. He scoots around the house on his knees and is very happy 100% all of the time. Its very difficult trying to figure out what he wants, he learned to point 2 years ago which has made a huge difference. We are trying to teach him sign language and have had success with simply signs : eat, drink, more, all done. And he starting using a communication device that has pictures for him to press the buttons of what he wants. It takes alot of consistency and repetition in order for him to learn something new. I also have an 20yr old step-son, 18yr old son and an 11yr old daughter, who do not have any disabilities.

Hi Diane!

Have you ever heard of CMV? My son is 16 months old and has global developmental delays. I contracted CMV while pregnant with him and the virus attacked him and wreaked havoc on his little brain

He also has like little tics, he will shrug shoulders without realising or blow raspberries without realising, and does a little dance when excited, he doesnt display this behaviour at school, most of his eccentric behaviour comes out at home and not school.

It sounds like he may also have Tourettes Syndrom, it is worth checking that out too - my son has Tourettes and ADHD and it took us 3 years to get him formally diagnosed.

I hope things get easier for you - and it is definitely worth getting formal diagnosis even if the school do help out lots. You can then get extra help from the Council, and also possibly DLA - its definitely worth going for.

Thank you! before we thought it was autism the teacher used to shout at him for not doing his writing and threaten him with the headmistresses office, he was coming home in tears every day and hysterical about going in the next day, so I kicked up a fuss, I told her I thought he was dyslexic as he was getting into such a state so i took him to see the doctor who thought he was autistic and arranged the paediatrician appt. Im sure the teacher is taking it personally! I told her the doc arranged it all not me, she said she doesnt know what it will achieve as he already gets help.... but he doesnt get one to one, its one to four or something like that! Its been so draining!! Teacher said he is withdrawn at school and doesnt give eye contact but she said as he didnt cause any problems she didnt think to mention it. His school friends tell me he is in tears every day at school!

Hi, i have a 9 year old son with high functioning Autism he attends a main stream school and is very intelligent, but he is super sensitive and has very high anxiety, I am DREADING him starting main stream high school in a few years, but hes to intelligent for a special needs school. I suffer from high levels of stress, not stress from my son because even though he is autistic he is very well behaved and we are use to his routine and his ways, but stress from trying to fight the education authority so that my son gets the education that he deserves, the gym has been my savior and i believe that i would be on a high dosage of anti depressants if i didn't go to the gym regularly, feel free to add me xxx

Hi Moms! I have a seven year old with apraxia of speech.

Please add me when you can.

My 9 year old son is low functioning autistic, non-verbal and self-injurious. Fortunately, he is able to make some eye contact and likes to cuddle as he goes to sleep.
After years of working with the public school, he now goes to an amazing school for children with Neuro deficits where he recieves all the therapies and support he needs to progress. He also has a service dog that helps him stay safe when he is out in the community. While there are tough times, we feel lucky to have him as our son!

hi, i have 4 children, my eldest is 11 and has aspergers syndrome - he has just started secondary school and we are having alot of problems with bullying which are causing him great anxiety last week he said he didn't want to live anymore - heartbreaking - getting so frustrated with the school and the system he was classed as in a cisis state and they arranged for an emergency meeting next friday!!! lets hope all goes well for us in the mean time!! i have joined your group i think we all seem to have to fight so hard for any type of help x

Hi, I am a mom of 4 wonderful, amazing children. My oldest son, 13y has ADHD, 12 yr daughter ADHD, 11yr son with anxiety issues and a 10 yr son with ADHD. My worst times are getting them out of bed and out of the door and bedtime. This cause me a great deal of stress that I usually turn to food for support. It would be wonderful to have support and to support other moms with special need children.

I am the Mommy to two special needs- my daughter has a Chronic GI disease- Eosinophilic Gastreoenteritis, she ws formula feed only until 4.5 and in the last 3 years and been able to start eating foods- we are at 10 different foods- all whole (no spices, breading etc) and experiancing a huge set back! So trying some new foods. She is aSuper Hero and will always be my hero, we have under gone so many surgeries I can't keep count -with out our log!

My son is 10 has the same condition jsut not as severe,

They are amazing!

My son is six and a half years old and at the age of 3 was diagnosed with Autism...then last year we were told he has a rare syndrome called Chromosome 6 deletion syndrome. There's not a lot of information about it but he continues with all of the therapies he received before the new diagnoses. He is also still in the Autism program since he still falls into the spectrum. The only thing I would give anything for him to be able to speak to me. His communication is his weakest area. I hate not knowing when something hurts or to know what makes him happy. It has got to be so frustrating for him at times. Luckily I was also blessed with my daughter who is 9 and he could not have a sweeter more loving sister. Having a special needs child can Dec have its hard moments but someone told me once God gives special babies to special moms. Its my goal to make him and my daughter have wonderful lives and know how much they are loved