Just saying "HI"

[luvstiggertoo]

Hi everyone! I am an "old school" DIS'er from a few years back. Work and life got in the way and my DIS'ing went by the wayside. I do occasionally come back (needed DCL info, trip tips, etc.). Now I find myself with a special needs child and of course, the first place I could think of for info, comfort and advice is the DIS!
I have a beautiful almost year old DD who is developmentally delayed. She does not speak and has only started to roll over and sit up. She's had several health issues....severe "colic" up until about 8 months, pulmonary stenosis, bladder reflux and she has had two sets of ear tubes. She has recently started physical and speech therapy and will begin occupational therapy soon.
We have recently seen a neurologist and have had a brain MRI and a EEG. Her MRI showed that her brain was normal, but that is was immature - that of a 5-6 month old. The initial EEG showed spikes and a "tendency for seizures", although we have never physically seen a seizure. We did a 24 hour monitored EEG which showed evidence of 2 brain seizures. We have just started her on Topamax.
We will also be seeing a genetist this week to determine if she has a "syndrome".
We have no official diagnosis yet.
It has been the most difficult year of my life....and yet, I know that it could be worse. For those of you with special needs children, how do you do it? I try to keep positive,, but it is so difficult. I haven't shared our experience with too many people because it is so hard to talk about. I don't want to sound like I want a pity party, becuase I don't. I just want to find others in similar situations that I can relate to . As I said, the DIS has always been a great place for advice, friendship, and comfort.
I'm sure I will again be back here on a regular basis. Thanks for listening!

 

[SueM in MN]

Glad to see you, but sad it is under these circumstances.

The answer to how you get thru is just, the best you can, one day at a a time.
Someone very wise told me that after the diagnosis, you just go on and love your child the same way you did before.
My DD was diagnosied with Cerebral Palsy and deveopmental delays when she was about 19 months old. She did things on time, just not well. She sort of figured out how to do everything despite her limitations. Once she got to the walking stage, there was no way to figure out how to do that. I feel very lucky in some ways because I had 18 months of getting to know my DD as a child before I had to get to know her as a child with disabilities.

Some kids do just wonderful things with therapy -it also helps parents to cope because it gives you something concrete to do that will be helpful.

So anyway, welcome.
And, in case you haven't read it yet, here is a welcome story that a lot of us have found helpful:
Trip to Holland

After you've read the story, post back and I'll add a bit more.

 

[mbb]

....It has been the most difficult year of my life....

...and you wonder daily how you ever got through it (while you go about getting through this year )

It's not "easier"..just more familiar somehow...and you find friends who care

Welcome back, we're here to listen


Mary Beth

 

[leise]

Welcome back to DIS Luvstiggertoo. Congratulations on your beautiful daughter! Just wanted to say I agree with Sue and MAry Beth, and that taking it a day at a time is the best way. Deal with what you have to deal with today. I have been on that "trip to Holland" for 4 years now since I started noticing the differences between my then two-year-old and the other kids. Eventually he was diagnosed with autism, and though most people would say I'm positive, laid back and at ease with it all, I have to admit that some days I'm not positive, some days I'm tearing my hair out, but most days I am doing my best, and that's about all I can do. I am an eternal optimist , but you can't always be perfect!

Like Sue says, remember that any diagnosis is a label to help your child get the help they need, it does not change your child at all, they are still the same kid they were before the label was attached.

I've come to the conclusion that this road us parents of special needs kids are on may be bumpy, long and you have no idea what's round the corner, but it's certainly not a dull ride. Every time I have a mad, bad day I try to remember the end of the film Parenthood, when Steve Martin is watching his son (who if I remember rightly had some interesting challenging behaviour) wreck the school nativity play, and he realises being a parent is a Roller Coaster ride. You have to go with the flow.

Also if you do find other parents in the same boat as you, and they share your sense of humour, grab them and hold on like hell....

 

[roseprincess]

Hi and to you and dd.
I have 8yr. old special needs twins. My one twin, dd, has Truncus Arteriosis (congenital heart defect). She had 3 open heart surgeries since she was born.
She also had a staph aureus infection while she was in the hosp recouperating from her first heart surgery. That was a nightmare to go thru, the infection. She almost died from it, but by God's grace, pulled thru. She was in the hosp. her first 4 and a half months of life.
A few months after she came home from the hosp., I noticed she was delayed in crawling, walking, etc. She didin't even start walking until 20 months old. I was able to get PT and OT first from the hosp. Then at 22 months old, had her evaluated for early intervention. She had OT and speech therapy 2 times/a week at home, until she turned 3. Then she and her dbrother went into the early childhood program at our school dist.
My dd, besides the heart condition, also has DiGeorge syndrome. Was told early on, right before her first heart surgery at 5 weeks old, that she had this syndrome. The syndrome correlates with the heart condition, this is what we were told by her heart surgeon. This might be the syndrome you are talking about? Anyways, DiGeorge syndrome has to do with the calcium uptake in her body, speech delays,low immune system, and developmental delays. I know this is the reason my dd ended up with the infection like she did, because it was a rare infection. My dd had the low calcium her first 3 yrs of life, she is no longer having the calcium issue. I do notice the past few yrs that she has the speech delay and is susceptible to colds/ flu. I also know she has the developmental delays. She is mainstreamed now in 3rd grade, she has a teachers aide with her full-time. I notice she has a hard time understanding certain academic concepts( math,etc.). It took her awhile to start reading and reading comprehension. She is progressing at her own pace. She is getting her services at school(speech, PT, OT, teachers aide).

I think you asked how do you go thru all of this? For me and my dh, we pray alot. I know I prayed alot when my dd and ds were infants/toddlers. Also, we had friends from our church that were a great support to us, when we were going thru the hospitalizations and surgeries. My dh and I still pray and we go to church on a regular basis. Also,dh and I have been involved in different support groups throughout the years. Also, the disability board, here, has been a wonderful support for me as well, the past yr.

Feel free to PM me if you have any questions on heart conditions and/ or DiGeorge syndrome.


Rosemarie

 

[SueM in MN]

Just a note about Syndrome:
A Syndrome is just a group of signs (a feature of a disease that can be seen by an examiner) that are usually seen in a particular disaease or condition. Many syndromes can share some of the same signs.

For example, people with Asperger Syndrome share some signs with people with autism. Some specific heart abnormalities are common in several syndromes.
One of the reasons they look for what syndrome might "fit" with your child is that some are inherited. If your child has one that is, it might be useful information for the future.

 

[luvstiggertoo]

Thank you all for your stories and welcomes! We are trying to get through this a day at a time.
Sue...thanks for the trip to Holland. What a wonderful story!
That is EXACTLY how I feel. I do know that "Holland" is a beautiful place. Taylor (dd) lets me know that every time I see her smile. Taylor is my third child, so I'm very familiar with "Italy". Part of me is so sad that I cannot be there but there is also a growing part of me that is excited to be in Holland.

Okay, enough of the metaphores!!
I knew I could come here and be among friends. I look forward to sharing with all of you.....good and bad!
to all of you for what you are each going through. I admire you all!