a bit about me & my kids... bless 'em..

iVillage Member
Registered: 02-08-2004
a bit about me & my kids... bless 'em..
7
Sat, 02-14-2004 - 4:24pm
hi there,

I have three children two with special needs, a daughter aged 12, and a son aged 9, they both have quite different issues. My daughter who is 12 has aspergers, ocd, anxiety & dyslexia as well as a good shot of hyperactivity chucked in ...I love her dearly but she drives me round the bend as we have some serious hormones running around at the moment.. oh joy a hormonal daughter with aspergers..I am praying serous amounts of patience and understanding :o)..

my son has Global developmental delay, low muscle tone , hypermobility, dyspraxia, sld, ADD,heart murmur, speech disorder, allergies cow milk soya and all major antibiotics, execema,...as well as the mishapen trachea, hypoglycaemia & ABO blood incompatability at birth...the failure to thrive , the severe spasmodic croup until he was 7 he is the most wonderful joy and pleasure and I am priveleged to call him son but my heart hurts so much for him at times with what the future may hold, he is both aware and yet unaware of his challenges. He is truly the happiest child I know and love, care for others and gentleness ooze out of him.. I think I am blessed!( slightly proud mother here)..

They have seen so many doctors, seen so many therapists,and they have both had so many tests and potential diagnoses.

Last year I told our child development paediatrician that enough was enough, the diagnosis was not really important, what was important was managing the difficulties when they arise, and ensuring all support is in place, glad to say she agreed and with liaison with education authorities and health on a regular basis my daughter has 30 hours of 1:1 support a week as school (mainstream) and my son is well on the way to getting all he needs too!

I have raised them alone alone for 5 years and have not just coped but grown in strength physically and emotionally. This Christmas I re married to a wonderful man and now I can get a little time to myself .. oh the joy and peace of going to the supermarket alone :oD

It has not been an easy ride and at times like anyone here knows its been more difficult than others.

People ( doctors, nurses, teachers, friends and family) have asked me over the years how have I coped as I also have an 11 year old too, the answer to them all has always been the same.. 1. It has never occured to me not to, 2. I have no choice and 3. I have never known it any other way so this seems pretty normal to me!

Yes my house is noisy and chaotic but it is happy and full of love. I would not want it any other way. At the end of the day I have 3 very lovely children who are growing up to be just fine young people.

I hope this can be a tale of encouragement and acceptance to alway look on the positive as the negatives you generally cannot change.

soxshui & co

Soxshui  

iVillage Member
Registered: 12-15-2003
Sat, 02-14-2004 - 6:07pm
soxshui,

I really enjoyed reading your post. I found it uplifting and lovely. Your children sound like such treasures. Special needs kids teach us so much about life don't they? I have three as well. My challenging little miracle is Em, 8. I have shared a bits of her storey on this board but usually just "lurk" in here. We are still trying to get Em diagnosed. So far, it's just anxiety and depression but with the behaviours going on in this home I can't believe it's not more. Not that I want "more" but the meds she's on have only changed her personality and behaviours from bad to worse. She is so unhappy it breaks my heart. She's so angry and hostile. She's gone from being a perfectionist to not caring about anything or anyone. She's gone from A's in school to F's. It takes months, sometimes years to get through the waiting list for help, then to find the right help! I'm sure others can relate to battlilng the system.

iVillage Member
Registered: 02-08-2004
Sat, 02-14-2004 - 6:43pm
thank you for your kind words,

It is difficult I know when you feel there is more going on than the Doctors can see and living with a child who is anxious, depressed ,angry and frustrated amonst other things must make you feel despondant at times, as as a parent we want our kids to be happy, and I know what you mean about waiting lists it sometimes takes forever!

Medication is a difficult issue, I have heard of so many parents who end up taking their chilren of medication because they feel it makes their children worse, I was one of them..I truly believe that as parents we need to have faith in our "gut " feelings as it is so rarely wrong. All the health professionals I know who are of any note agree that parents know their children best! If you feel that the drugs are not helping your child, and you feel there is a bigger issue that they are missing then go back and tell them, do not feel intimidated or browbeaten by the professionals, in my experience it is only by persistance that you will get somewhere ( or at least thats the way it is in the UK ). It is an uphill struggle to get to a point of satisfaction.

I wish you the very best and truly hope that your daughters emotions and issues are understood and the right kind help for her comes soon. I also hope that you find peace and rest enough to live through this challenging time.

yours

soxshui

Soxshui  

iVillage Member
Registered: 12-15-2003
Sat, 02-14-2004 - 9:24pm
Thank you, again for your post. It's odd to hear of "the professionals" as I am supposed to be one. I work with children and families all day long. And yet I feel I'm slowly losing my own child. My non-traditional of 15 years marriage is falling apart and I'm burnt out at work. I'm too exhausted by everything else.
iVillage Member
Registered: 03-19-2003
Sun, 02-15-2004 - 7:32pm

Hi Soxshui and welcome to the board.

 


 



iVillage Member
Registered: 03-19-2003
Sun, 02-15-2004 - 7:39pm

Don't forget that there's an outlet here!

 


 



iVillage Member
Registered: 12-15-2003
Sun, 02-15-2004 - 9:43pm
Thanks again for your kindness. Sometimes I do need an outlet, as we all do. Good things did happen today. Em had a good day. And she played nicely with her brother. My 11yr old cleaned her room - no small adventure, let me tell ya! Back to work tomorrow to solve the world's problems, lol. Have a good night, or day, where ever in this huge world you all may be.

Cathy

iVillage Member
Registered: 03-19-2003
Sun, 02-15-2004 - 9:49pm

Cathy, this world is much smaller than we every imagined it could be!