Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 <<crying and letting it out is a lot better than getting angry all the time when there is no one to be mad at but God.And I must say I am mad at God sometimes still. Love Laurie>> Hi, Everyone...Laurie...I, too, use to get angry with God whenever something 'new' would come up with Gareth's health, education, or behavioral issues. " How much more can one child deal with? " was always my question. Gareth would deal with it fine....it was MOM who had the problems!!! Personally, for me, I had to make peace with the autism dx. and the issues that come from it. I stopped making excuses for his behaviors and started educating those around him. I stopped being embarrassed in public places whenever he would start acting out or stimming. It's hard....no lying about that. This site helped get me to that stage...almost 6 yrs. ago. You and Mic are off to a good start. Pray for patience each night....just enough to get you through the next day. Take care, Everyone. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 In a message dated 11/24/2003 2:20:14 PM Eastern Standard Time, mick8_7@... writes: > How come nobody warns us about this.I can only guess because people figure > we already have enough to worry about.I could have been prepared for this but > was ignorant. Hi Laurie, I don't think anyone would think to tell a parent to learn the sped laws. Some parents never have a problem. I remember going to many workshops on transitioning from birth to three program. I was knowledgeable on what services my child would need etc. but was never told to look at the resources available in my district and what their philosophy was in educating children with intellectual disabilities. You really need to look at the whole picture. I had no idea I was about to pioneer my cause. It has been a rough road. I embrace each successful day one day at a time. Charlyne Mom to Zeb 10 DS/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 Hi Laurie, Bless your heart on the length of time not receiving any answers or having anyone listening to you. 4 months old not knowing about being born with Down syndrome. What a rollercoaster ride it's been for you since he was born so I hear ya. Take care and together we should get through this one day at a time learning & educating anyone that crosses our path so that our kids could fit in and we are here for each other for strength & power to move forward. HUGS! Irma,15,DS/ASD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2003 Report Share Posted November 25, 2003 In a message dated 11/25/2003 4:51:14 AM Eastern Standard Time, mick8_7@... writes: > I wish I could learn not to get mad first I > hope that comes with knowledge.I need a more thorough book am searching > around will find one. Hi Laurie, Your smarter than what you think. I always get mad at home but go to meetings well prepared and oh so sweet. IDEA goes through revisions every five years so some of the regs are about to change. The best book to start with in my opinion is slaw, Special Ed Law. You can order it from their site. It will give you a good understanding. You will do just fine. I tape every meeting for my records in the event I have to refer back for clarification. Charlyne Mom to Zeb 10 DS/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 In a message dated 12/23/03 2:30:31 AM Central Standard Time, writes: > Hello everyone, Its 1032 and am home with Mic with bad news, he had tests > all day and they tell me hes so hypotonic that he cant digest enough food to > thrive.Everything else was ruled out.Hes getting enough to stay hydrated but > not enough to thrive.I was pleased with the drs they actually listened to us > and never questioned us.So next week we go to the Gi specialists he > specializes in children with disabilities.A feed tube is most likely.I never knew he > was this severe with the muscle tone inside him.I was so hoping it was an > obstruction and we could just fix it and go on.Also sensory is playing a big > part.Mic melted down so bad with the drs.He is regressing.Lack of nutrition.I > should of done this a year ago but never thought about this just thought it was > sensory and we cant fix it.Have any of you ever heard of this?They told me it > was rare but happens to some ds kids.I am shattered but will get through it > at least we have an answer that makes some sense to me.He also is going to a > lady in the medical center that has alot of sensory knowledge. They are also > gonna set us up with a ped that knows sp needs kids.I have not slept in 2 > days more than 4 hours and am exhausted.Wanted to let everyone know what > happened today but cant think straight tonite.Thank so much to all of you.Back > tomarrow. Love Laurie > It is easy to look back and say we could have or should have but reality is that a year ago this may not have shown up like it is now. I'm glad you are getting resources to address the issue. Good luck on these specialists working well for Mic, remember-you are the real expert on Mic. I was very interested to hear about the hypotonia affecting his digestion. Do I have that right? at 14 years old still has digestive issues that I wonder about. He had surgery for reflux at age 3 and his digestive system has never been normal. Keep us posted when you feel up to it. Karyn Quote Link to comment Share on other sites More sharing options...
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