Overwhelmed

Elizabeth - posted on 09/07/2009

hi stacey my daughter was diagnosed with type 1 diabetes when she was 3 she is 6 now.and it was hard in the begining to say no to her about what food she could and coul not have.even now is hard when she wants sweets and her susars are to high all the other kids have some.so i try to give her crips and things that are still like treats to make up for no sweets. and then when my son was 2+half he was diagnosed with pdd/nos.it was hard at the begin to work around the to but now i make sure all appointments between school play school ot speech hosiptals clinic etc. areall timed to the best way for all of us .so no one is stressed or running from a to b with no time to scratch themselfs.it dose get better bit by bit. take care and keep in touch. liz from ireland.x

Jan - posted on 09/07/2009

my grandson has Autism & ADHD and what a joy he truned out to be yes he has is funny ways but as you learn what they are and what triggers them you will put things in place to avoid/deal with them my grandson is sweet, funny, and caring in his own way and will althings in place to help him it will get better just give him and yourself time to learn how to live with this take ways stick up for people smaller than himself. He goes to main stream school with care

Stacey - posted on 09/07/2009

Thanks Jade, I know exactly what you mean, some days you do feel on top of the world, and then there are days when you feel really overwhelmed and emotional, it is an emotional rollercoaster.

Jade - posted on 09/07/2009

i took my son to see the dr when he was 9mths because of his rocking and told the dr he was autistic, the dr told me there was nothing wrong with my child so at 18mths i called hv and he scored a big fat 0 on developement chart and still had brain of 7mth, she refered us to hospital and when they said autistic spectrum diasorder i felt so angry that i hadnt been listened to as as a mum u know ur children. but he had to see lots of specialists first before they could say yes for definate, a month before his 2nd birthday they said moderate to severe autism and that when i changed, i started to say they where wrong he was just slow, i made a mistake he fine, but in my heart i knew it was dinile (soz aboout spelling). i know he has autism and quite bad but some days when he being really hard to look after i slip back into my denile and refuse to believe it. and at the moment it hard as my older sonm who just turned 3 is now showing signs of learning problems he being refered to speech therapy and hospital as although he can speak unlike his brother it is not very understandable, doesnt know his name and borrows words not knowing what they mean but uses them when talking also he has gross motor problems, some peole tell me he seems to have asperges as he has an ocd not for toys but cleaning, and just started nursery and has changed so violent as a change in routine plus the nursery aproached me after 2days with concerns, some days u feel on top of the world especially if they have learnt something new but then the next day it can all change so suddenly. its a rollercoaster of emotion with our children but they worth every tear and every smile

Cristy - posted on 09/06/2009

we are here for you please know that we are your family of mums to help you through xx

Nikki - posted on 09/06/2009

Quoting Stacey:

Thanks everyone for your comments, they all help.
Candace, you and I are very alike in that the way I need to/ try to deal with this is to read read read and to want to talk talk talk. Problem is that the people closest to me who I want to talk to just dont seem to understand and dont seem interested when I talk to them about these things. & every time I feel the need to talk & dont get the opportunity to really let it all out, it builds up until I just break down in tears. I know I have to keep at them, I have to tell them how I feel. As sad as it is, I get more support and feel better talking to you wonderful mums. I will tell them how I feel, I know I have to.

Yes, keep at them! And yes, read, read, read! The more you understand autism, the more you will understand your child. You are not only his mother, but you are also his advocate! The more knowledgable you are, the more it will help your son! There will be people along the way who will be discouraging and down right mean, but the more you know, the less those people will stand in your way! Two years ago I had a psychologist, who had only met my son once, do an IQ test on him. During my son's IEP, this psychologist read me the results of the test. He also added in his "two cents" and proceeded to tell me that my son will never live on his own, never be able to balance a checkbook, never have friends or be involved in team sports, never have a driver's license, etc. A LOT of "nevers"! Luckily, I have a great team at my son's school and all of them had some choice words for that idiotic psychologist before he was not so politely asked to leave the meeting. I didn't have to say a word in my son's defense because I was surrounded by people who care about my son and see him as the wonderful young man he is! These are the kinds of people you want to be fighting side by side with you...anyone else just doesn't matter. If you pour your heart out to someone, whether they are family or not, and they turn the other way, so should you! It's not worth your  time or your effort to "make" them understand. A good support system is key to living in a world with autism and if there is even one toxic person in your life, they will bring you down...don't let them! Be strong for yourself and your son and surround yourself with loving, caring and knowledgable people :)

Cristy - posted on 09/06/2009

thank you for being a mother with pride. i have made it my lifes mission to change peoples way of thinking towards people like our sons . if you replaced baseball with drawing you would have my son . i have loss count of the times someone has hurt my son and he as turned the other cheek. my sons name is brandon he will be 13 on 5th oct he is 6ft3in tall.and one if not the most beautiful people i have had the pleasure to meet and pride hasnt being to cover how i feel that he is my son.
feel free to chat with me any time is nice to hear frrom someone that sees their son as a pleasure not disable

Nikki - posted on 09/06/2009

Hang in there mommy. My son, Ian, was diagnosed with autism when he was almost 3 (he's 13 now). I knew in my heart that he had autism and waiting for the actual diagnosis was pure hell. I can tell you that once you have that diagnosis, that weight that you feel on your chest will be lifted. With the diagnosis will come more services to help your child and the rest of your family. This doesn't mean that all your stress will go away, but having the right services will definitely help! It amazes me how far we have come in the past 10 years as far as understanding autism and how to deal with it. When Ian was 3 I took him off of milk (just milk) and the changes in his behavior were amazing! He went from being severe, with close to no language skills to high functioning and speaking within months! After 10 years of OT, PT and ST my son is now in the mainstream classroom for most of the day (special ed for 2 hrs a day) and requires no therapies at all. He excells in baseball...he's 13 and can pitch a 70 mph fast ball...and is loved by all who know him. I consider his autism a gift. I know that sounds strange, but he is the most polite, caring and affectionate child I have ever known. He doesn't know prejudice or sarcasm and has never said a hurtful word to anyone. He treats everyone with respect, even when that person is rude or offensive. I am so proud to be the mother of a child with autism!



Things will get better with time. I know things are rough right now, but just hang in there...the early years are the toughest, but as you watch your child grow and make improvement, you almost forget how tough things really were when they were young.



I hope I helped. If you ever need to chat or "vent", I'm here. Take care and good luck! :)



Nikki

Tonya - posted on 09/06/2009

I cant really say that you will feel better because I use to wounder if things will ever get better and having a 17 yr old with Asperger every day is a new day. things that worked yeasterday may or may not work today, but what I can tell you is that you will feel the stress level go down once yo have a diagnosis. Even if you look at it as if well ok we have ruled that out. I struggled for a long time because I knew there was someting there but had no idea what it could have been then when my son was in 1st grade he was diagnosed with ADHA and yet that did not seem to cover all of the issues. After my sons principal said there was nothing they could do with him because he was a problem child I moved and he started a new school and a new councelor and was then diagnosed with Asperger Syndome allthough we did not stop there we did find ways to deal with some of ther problems and as he gets older there are more and more things that come up. We just take each issue and deal with it seperatly and although there have been several times I have felt like throwing in the towel an new day will appear and we get the chance to start a new day. So keep your chin up and wake up every day with a smile and tell your children you love them for just being who they are you will find a brighter world. Good luck!

Barbara - posted on 09/06/2009

I understand whole heartedly where you are coming from. Though at first my husband was not supportive he told me that if I took my son to therapy that he would leave me. Well I did take him and my husband will be married 18 yrs in November. We have had our ups and downs but have survived. What you are feeling is like a grieving process when someone dies. Getting a diagnoses of autism or pdd or aspergers will not change who your son has been all these years but nor will it effect the way you treat him but you will go through the same stages as death guilt what did I do that made him this way, denial not my son. and then finally acceptence my son is the way he is because he is. These are all normal and when your parents and in-laws learn this they to will go through these steps. I hope that this helped you

Audrey - posted on 09/06/2009

i have a 8 yr old boy with autism my luv is with u my family still avent accepted it i am married but feel like im on my own xx

Cristy - posted on 09/06/2009

i have a 13 year old i have known snice the day he was born that he was different.and i feel blessed as i see it i got the paper of paper that makes his life easier when he was 2 .you know in your heart your son so please dont just wait for someone else to tell you what you know please fight for his right.
as with the lactose thing to test your son yourself just a drop of milk on the side of his lip if it starts to go red he is .this was taught to me by a midwife. i have 5 kids altogether so if you need to talk just drop me a message ok.

Stacey - posted on 09/05/2009

Thanks everyone for your comments, they all help.

Candace, you and I are very alike in that the way I need to/ try to deal with this is to read read read and to want to talk talk talk. Problem is that the people closest to me who I want to talk to just dont seem to understand and dont seem interested when I talk to them about these things. & every time I feel the need to talk & dont get the opportunity to really let it all out, it builds up until I just break down in tears. I know I have to keep at them, I have to tell them how I feel. As sad as it is, I get more support and feel better talking to you wonderful mums. I will tell them how I feel, I know I have to.

Jenny - posted on 09/05/2009

hi stacey

my son who is almost 6 was diagnosed with autism in may we are still learning too and no its not easy at all but we take each day as it comes there is help out there if you need it take it honestly done feel ashamed to as we do we learnt were not the only ones with a child with autism or the other i am here if u need to chat but it is a long slow hard road im not going to lie about that besides that my son has a rare syndrome aswell and was quite ill in hospital for the first 13 motnhs of his life so weve had the works too knws where youre feelings are coming from

if you need to write feel free

thanks jen

Melissa - posted on 09/05/2009

my son was diagnosed at 4 years with high functioning non verbal autism. at around two is when i started to really notice he might have autism, but no one, not even the doctors, would listen. i cryed about that for those two years. and when he was finnaly diagnosed, i cryed then too, it felt like a piece of me died. my youngest is allergic to all citrus. so diets get a little crazy at my house. my oldest is 7 now, and we have to change the things we do sometimes to make things more comfortable for him. dont be too down hearted, yes things will change and the way you handle things will change too, but whatever happens know that there are people here that you can talk to. and your family will eventually come around to it too. everyone deals in a different way, but the trick is not to let it overwhelm you too much. find your way of dealing and the changes you will need to make and have a family meeting. let everyone know what kind of changes are going to happen and what you need help with. family should be your first line of defence, not a last resort. if you need to cry just to let off some of that weight, do it. it will help you get a different perspective.

Candace - posted on 09/05/2009

I know exactly how you feel about this. It’s overwhelming and you feel completely isolated. My story is a long and sad story. And one of those things I would have to say, you should be thankful you have knowledge able doctors that can actually tell you what was the matter so soon... early intervention is key with any form of autism. It’s also never too late, but early knowledge makes things so much easier.

I have also found that at the age of 2, is when forms of autism show up most clearly. So it’s good that the doctors were able to spot this now, rather than later when your child is in school and labeled too well that they are just a problem child.



I have also found, that the best way to cope with this, no matter how overwhelming or nerve racking it may seem, is talking to people, to everyone. Educate them, let them know this is no longer a taboo subject of the past, you don’t have to wait for them to approach you, because for so long in the past history, autism and dysfunction of the brain were taboo subjects and it was only because our knowledge of them were so limited. With me it’s the way I’ve coped. And every time I’ve spoken with someone, that overwhelming and tight chest pain eases just a little bit. I knew, no matter how awkward it seemed or even wrong, that if I didn’t tell them what I knew about this whole thing I would never feel better, I would never be ready to accept what felt like such a final judgment.



Because as mom’s in our hearts, no matter what is, has happened, or will be, our children will always be normal, healthy and perfect to us. But normal society needs to be educated, and trust me, there are a lot of people out there that need this education, so that they too can see, understand, and be given the ability to help, and hopefully pass it along to their children to not be so cruel and judgmental to someone who just learns things differently.



I know it feels like you’ve been cheated. But really, you haven’t been cheated in the least. Everything happens for a reason. Now is the time to dump normal and think outside the box. And personally I really hate bringing religion into this, because of so many different beliefs, but its how I’ve learned. But, if God didn’t think you could handle this, and be brave enough to deal with, battle for, even stand up for this child, and learn from this child, this probably would have never happened. Because it really takes a very special person to raise a child with special needs of any kind. And I have faith, that God wouldn’t allow that to happen to just anyone.

Erica - posted on 09/05/2009

Hi stacey! My now 3 yr old was diagnosed @ 22months with Autism, he is mild to moderate.He is also developmentally delayed(last time he was tested he was @ an 18 month level) First you just need to take a deep breath and relax! I got myself all worked up and stressed out also, but ive learned to cope by just taking it one day at a time....my mother once said during one of my "freak outs" "Erica, it is what it is and stressing out wont change it, so stop the nonsense and do what you need to do for your son. Life isnt over its just slightly more complicated now" I know that seems mean but honestly when i think back she was right. You and your family will be fine. Stop feeling guilty for trying to do what is right for your family. I spent so many months feeling guilty and cheated and it didnt do me any good. I do feel overwhelmed at times with all the speech, occupational and developmental therapies and all the extra appointments he has. I still worry about the future sometimes but I know it will all work out in the end. My goal is to love my children and make sure they know they are loved and that I am proud of them. If you need someone to talk to you can always send me a message. Good luck sweetheart and just remember...take a deep breath and relax!

Becky - posted on 09/05/2009

I have twin boys with Autism they have PDD-NOS I cried when they first told me because life changes but I realized that I couldn't feel sorry for myself I take my kids to OT,PT, Speech they are in a special needs PK & at times I feel like I never get a break it's been about yr & half since we found out My kids still don't talk but non-verbal is getting so much better & with all the help I do see them improving It's going to be a long battle but you will realize it's a blessing I wouldn't give up my boys for anything in the world because they would be different smiles, laughs, etc. I know one day my kids will look at me & say mom I love you. So many people take their kids for granted We don't have that luxury everything is a achievement. Just make sure you can get sometime to yourself. I know it doesn't seem like it will get better but it does You need to sit down with your family & make them understand because every little bit helps They need to research & they need to understand how to help because you & your husband will need date time & at times you will want to throw your hands & the air and give up on those bad days that's when you call & they come over & tell you to go take a long two hr bath they have it. It will get better I know it's doesn't help but don't give up dreams still can be realized maybe different ones but they do hapen

Jennifer - posted on 09/05/2009

Hi Stacey,

My four year old son is recovering from autism. It still makes me sad sometimes, but now it is easier b/c I can focus on the fact that he has improved so remarkably. I had my son tested for allergies as well. His results indicated he is not allergic to anything. You should know that the gluten free/casein (dairy) free (gf/cf) diet is not because the kids are allergic....not necessarily in any case (they could be or could not be)...the kids simply cannot digest the stuff. The gf/cf diet works, though...please give it a shot and stick to it 100% for a couple of years at least. You will be glad you did. You should stick to it for the rest of his life, but it is particularly important to do it 100% right now. My son is gluten, casein (dairy), corn and soy free. Eliminating all four is recommended, but you do what you can. I can give you advice on where to find gf/cf cakes, breads, etc if you want...just let me know.

Have you found a DAN doctor? This is a Defeat Autism Now doctor. Dr. DeMio in Ohio is the best I am told. We use Dr. Mumper in VA (just moved from there). A DAN doctor can help you recover your son. The labs are covered by insurance, but the doctor visits are often not... or at least not fully covered. However, they will run labs that your traditional pediatrician will not...THIS IS VERY IMPORTANT. Using a DAN doctor is how we recovered our son. I would also highly recommend that you start giving your son a teaspoon of liquid cod liver oil (made by Carlson) daily - you can pick this up at Whole Foods or any health food store. Get Carlson brand b/c it is toxin free. Cod liver oil fixes a g-alpha protein malfunction -- you can look it up on the internet- just google "Dr. Mary Megson and g-alpha protein defect". The cod liver oil tastes like lemons...pour a little in his apple juice in the morning, and your son will never know the difference. It is very safe...no worries. Just oil from a fish. But is has a specific form of vitamin A that many many autististic kids are deficient in. Keep his body's cells healthy (cod liver oil significantly helps cellular function) and the rest of him will improve.

My son is turning 5 in October. We are still treating him...but he speaks perfectly normal, sleeps at night now, plays with all the neighbor kids, goes to preschool, is a healthy weight and height, jokes, laughs, and tells me he loves me. The problems he still has include tantrums/screaming at inappropriate times (transitioning) and hyper...but we are working on these and they are improving. These symptoms are nothing compared to the speech loss, diarrhea, tantrums, exzema when he was younger. We are in a great place now...but it took a lot of work.

I cried a lot at the beginning, nearly every few minutes every day. It was horribly hard. I felt trapped with him, yet loved him abundantly. The trap was that I didn't know what to do or how to help him. Then someone told me to go to www.generationrescue.com and I signed up for a Rescue Angel there. This is someone who gives advice and points you in the right direction. Please check it out if you are at all interested. You'll get advice via email...take it or leave it, but it is quite helpful. My sadness was intense for a year and then started tapering off as my son improved. I understand what you are going thru. I hurt for you. I am sorry this has happened to your child. Family and friends usually don't get it; truthfully I don't think anyone can unless they experience it first hand. My husband is very supportive, but the bulk of the treatments and decisions are on my shoulders. Keep your husband involved as much as you can, even if it is just to comfort you. This is valuable as you heal and as you find help for your son. This is the first time I've responded on circle of moms...if you want to talk, let me know. I'm happy to give you more suggestions for recovering your son or just listen. Again, the sorrow is deep. You are not alone, but, yes, you will feel alone for a while. The best advice I can give is find a DAN doctor and start the treatments. You can start the diet and cod liver oil now - you don't need to wait to see the doctor. Then when you see the doctor, he/she will tailor the recovery process to your sons needs. Do not wait...the younger they are the more they will improve or recover completely. Here is a list of DAN doctors in each state: http://www.autismwebsite.com/practitione... (if you can't get this site to work, you'll have to go to a different site and then click on the site above -> http://www.autism.com/dan/danusdis.htm) Let me know if you need anything. Take care of yourself, Jennifer

Karen - posted on 09/05/2009

Hi Stacey my 8 1/2 year old son was diagnosed at 4 1/2 years old with high functioning autism with asperges traits. I to knew that something wasnt right and suspected that he may have mild autism as 1 of my friends sons is autistic and I noticed at lot of similarities between them.



I did grieve when he got the diagnosis but it was also a relief as I knew what was wrong and I could finally get on with learning how to help him.



My son also has vonwillebrands disease, hypotonia, Ehlers Danlos syndrome, dyspraxia and a few other minor problems.



My 19 month old son has Haemaplegia cerebral palsy, 2 heart murmurs , Hypotonia and Ehlers Danlos syndrome. Yet again I grieved for my son and the thought of him not being like all the other kids.



My 6 month old daughter has Hypotonic lungs, floppy larynx syndrome, Hypotonia and is serverly developmentally delayed. Yes I again grieved for my child



It is natural to grieve and a healthy process or you get overwhelmed when it comes to the therapy and strict routines that become your daily life. You think what is happening to my life it has changed so much and you can begin to resent your child.



Dont feel bad. It is a big deal to have a child with special needs and it does mean that life for you will change but it will also change for the better as now you know what is wrong you can go about making the changes that will help your child and your family.



There are plenty of organisations out there that can help you make the changes and support you through all this.



if you want to talk further my email addy is iamasmartgirl@hotmail.com



Good luck and my thoughts are with you