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Autism diagnosis- 3rd time. I''m devastated.

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hi again,
i posted on your other post to say how sorry i am you are going through this. funny, your comment about anonymity on the web...my hubby went to a 3 hour educational thing at children''s hospital back in march(my son was diagnosed type 1 last dec). well, he has NEVER given him a shot, NEVER asked him about his numbers, etc etc. in fact, one friday night, i was FIVE doors down, at my walking buddy''s house(her hubby was working out of town) and we were chit-chatting and having some wine. next morning, guess what? son had fallen asleep and forgotten to take his basal insulin(which allows diabetics to eat when they want/as needed as opposed to a real restrictive set time schedule) and it was the game before the game before the state game for his high school soccer team. my son was sooo upset, so p*ssed that he fell asleep. i had a full-out screaming match with hubby(i know not good) in the kitchen over his lack of participating in the diabetes thing. my son was soooo worried about his performance on the soccer field that day. it all worked out(they actually won the state title two weeks later!)
i actually do feel your pain. people with wonderfullly supportive husbands have NO idea. my hubby travels almost every week mon-thurs to chicago(good riddance!) so...i am responsible for EVERYTHING, you know, house, kids, bills, cars, you name it. yeah, i do feel your pain. i wrestle with staying/going. i really will need another degree/or my master''s to find a truly prosperous career. our baby is only 2 so i am tired and old(er) and just not ready to tackle school again. i resent dh so much for not helping and not helping our son. he''s 17 but i have always wanted him to believe that he was never out there, alone, with his diabetes. it''s just too da*n hard of a disease to deal with constantly alone.
i hope your appt helps you find a little peace. i am sure all of your children bring you great joy. i have been blessed with healthy, bright kids, but this last one is a pistol. she is testing every fiber in me already..such is life.
take care and i hope to read good news about you and your little girl soon.
ps even on the net, sometimes people judge, don''t want in your shoes, can say hurtful things. that is why i hesitate to get "involved". i was on a parenting site when ttc our 4th child, but as soon as someone said to me, "why dont you leave the sob?" i never felt the same. we all have our own crosses to bear.
 
AIM~ I just wanted to add my prayers to the ongoing list. I can''t imagine how difficult this must be for you and your family. Obviously, God thinks you''re the best woman to care for these children. That''s quite a compliment to your strength, integrity, compassion, creativity and love. You can do this. You and your husband need to work together and enlist some outside support. As was mentioned, if he''s not comfortable telling friends, at least get connected with some support group. You''re going to need support, ideas, and a place to vent.

Good Luck to you and your family. YOU were chosen to be the mother for each of them. YOU were picked for a reason. YOU CAN DO THIS!
 
I want to say thank you for the support. I''m really too beat to respond to everyone but please know how touched I am at all the support. I really appreciate it.

snowflakelovr, thanks for sharing your home life with me. It makes me feel not so alone that I''m not the only one.
 
AIM, I''m so sorry for your struggles and heartbreak.

I''m not going to parrot what everyone else has said already about needing to address the communication issues with your hubby because I think the comments made have been eloquent and need no further addition.

I just wanted to chime in to say that perhaps you can find comfort or relief from bearing the burden alone by talking to your pastor/priest/person of faith in your religion. I''m not religious at all myself, but for those who are, this might be an outlet for you to unburden and seek some guidance/strength. Most of the ones I''m familiar with are bound not to disclose information revealed to them, so it''s typically a safe place to get the support you need.
 
sending hugs. I definitely agree that you should try and speak with a support group. Know that you can get through this.
 
I''m so sorry to hear this! I agree with everyone else -- if there''s a support group in your area, it might be a good idea to check it out. Thinking of you and your family...

Zoe
 
My cousin has three boys and two are autistic. It was very difficult for them to adapt to the second child being diagnosed and they worried very much for the youngest, until he was old enough to be sure he didn''t have it.

If anyone was in denial and didn''t want to discuss the topic, it was my cousin''s parent, my aunt and uncle. There was a lot of quiet finger pointing and disclaimers about it not being ''in this family'' and not a whole lot of support being offered, until they took the cue from my cousin''s wife who was amazing. She looked for and found support through groups and networks and paid no mind to anyone who wasn''t helpful. I am sure it rocked their marriage, but they did survive and now are stronger than ever.

Perhaps your husband needs to talk to someone about how he is feeling too. Does he have anyone you think he would trust to discuss this with?

I wish you strength and perserverence. I am sorry that you have this new diagnoses to deal with. My thoughts will be with you.

Heather
 
I am going to talk to my son''s therapist today who is an expert in autism and aspergers. She has been so wonderful in helping me when my boys overwhelm me and I know she can help me deal with this and refer me to my own therapist if I need additional help dealing. I am going to ask her about resouces such as support groups with other parents as well. And even a couples counselor because we certainly need it.

I woke up this morning with a thought- when my kids are older, I want so much to try and remove the stigma from having an autistic child. Its that stigma that has driven my husbands demands for me to stay quiet and not share with people. That makes it so much harder for those of us that have autistic children. My chidren are amazing and I feel so incredibly lucky to be their mom and yet their issues make it so stressful for daily life and isolation makesi it worse.

I have friends but not being able to share the major things I''m dealing with its just awful.

As for the religion thing, I am not a christian and not particularly religious. However, those of you who offered prayers, thank you I do appreciate it- they certainly can''t hurt :)
 
Date: 12/20/2007 9:14:54 AM
Author: asscherisme
I am going to talk to my son''s therapist today who is an expert in autism and aspergers. She has been so wonderful in helping me when my boys overwhelm me and I know she can help me deal with this and refer me to my own therapist if I need additional help dealing. I am going to ask her about resouces such as support groups with other parents as well. And even a couples counselor because we certainly need it.

I woke up this morning with a thought- when my kids are older, I want so much to try and remove the stigma from having an autistic child. Its that stigma that has driven my husbands demands for me to stay quiet and not share with people. That makes it so much harder for those of us that have autistic children. My chidren are amazing and I feel so incredibly lucky to be their mom and yet their issues make it so stressful for daily life and isolation makesi it worse.

I have friends but not being able to share the major things I''m dealing with its just awful.

As for the religion thing, I am not a christian and not particularly religious. However, those of you who offered prayers, thank you I do appreciate it- they certainly can''t hurt :)
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I hope meeting with your son''s therapist today is a positive, helpful experience. Couples counseling sounds imperative at this point so that you and your husband can get on the same page regarding your childrens'' needs and how you, as a couple are going to meet them. Hopefully it will open his eyes to the damage he''s doing to you and your children by placing unrealistic expectations on you.

My best to you. If you''re comfortable doing so, please keep us posted.
 
Date: 12/20/2007 9:14:54 AM
Author: asscherisme
I am going to talk to my son''s therapist today who is an expert in autism and aspergers. She has been so wonderful in helping me when my boys overwhelm me and I know she can help me deal with this and refer me to my own therapist if I need additional help dealing. I am going to ask her about resouces such as support groups with other parents as well. And even a couples counselor because we certainly need it.

I woke up this morning with a thought- when my kids are older, I want so much to try and remove the stigma from having an autistic child. Its that stigma that has driven my husbands demands for me to stay quiet and not share with people. That makes it so much harder for those of us that have autistic children. My chidren are amazing and I feel so incredibly lucky to be their mom and yet their issues make it so stressful for daily life and isolation makesi it worse.

I have friends but not being able to share the major things I''m dealing with its just awful.

As for the religion thing, I am not a christian and not particularly religious. However, those of you who offered prayers, thank you I do appreciate it- they certainly can''t hurt :)
Click to expand...
There are an awful lot of people with autism spectrum disorders. When you say "autism" most people think of that unreachable child rocking in a corner who cannot care for him/herself in even the most basic ways (like using the bathroom). Autism is an umbrella that covers a whole spectrum of disorders. There are probably a lot of very successful people with autism spectrum disorders (ASD). Think of the neurosurgeon who has to literally saw people''s skulls open and perform surgery on their brains. They have to be focused in a way that 99.9 percent of all people cannot be. They have to "objectify" the patient because to empathize would compromise their ability to do the work. How many people could be content to work in a research lab for long hours focusing on the molecular structure of a given enzyme or come up with new polymers. There are aspects of ASD that can actually benefit the human race. A lot. Think of the great inventors: Edison was thought to be an imbecile and unteachable when he was a child -- his mother schooled him; Einstein most likely had Asperger''s; Bill Gates is reputed to have Asperger''s and he has completely changed the face of technology. He and his wife have also started a humanitarian organization that benefits so many people. I refuse to see my children''s ASD as something shameful or unspeakable.

We definitely need to get over the stigma. I am. My main challenge is helping my kids navagate into adulthood when they have hopefully made alternate (to the typical) neuropathways to compensate for whatever their challenges are. And the other challenge is dealing with others'' idea of autism at school (parents, not the teachers, thank goodness) and within our family. My husband''s family also was like, "Nope, not in our family. You just don''t know how to be a mom." Now they are definitely seeing things differently, but it took a long time.
 
I dont really know what to say other than I am sorry.
 
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Ascherisme -

You are a very strong woman - and you are purpose-driven. You have caused me to want to learn more about autism. I work with lots of mommies and newborns, and it is a subject that comes up so often. Many are reluctant to get their babies immunized because of the theories of causes of autism.

It is my belief that it is best not to isolate yourself - go find others who are also experiencing autism. You have so much to offer, and you are a wonderful mother!

Do you have a recommendation of the best website and organization to look at regarding autism?
 
Thank you, Lumpkin!
 
AIM,

I am sorry that you have so much to bear right now. It does seem that if your husband continues to make life harder for you (thus making you less available to help him and the children), you may, eventually, be tempted to do without him! I therefore agree with everyone who says that you cannot let him take you hostage. This is your life. He cannot be in charge. He is not the Minister of Information and he is not in charge of to whom you speak or about what you speak. You need support from every place you can get it. You need phone calls coming in and girl friends stopping you on the street if you go out to shop. You need a network the size of your town and then a larger one that includes old friends and family with whom you can communicate by phone and Internet.

Rather than let him rob you of what you need and then fall under the weight of this burden (which could fell a titan), just stop your husband from isolating you right now!

Good luck,
Deb
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Date: 12/20/2007 4:51:18 PM
Author: AGBF

He is not the Minister of Information and he is not in charge of to whom you speak or about what you speak.
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By the way, I have been married for over thirty years to a man who started out in the belief that he was absolutely in charge of what I said. He was European. I loved him and wanted to stay married. It took us many years to iron things out. I am certain I needed to tell him that he was not the Minister of Information. I know I told him that we lived in the United States now and that here we had freedom of speech. I believe that I told him I could say anything I wanted to absolutely anyone at anytime and that my speech was not under his control.

Deb
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You''re welcome, Tulip.
 
Oh, asscherisme, I am so sorry to just now be seeing this! I have a master''s in special ed., so of course I know some of the educational side of autism. As others have said, getting outside help is critical, especially if your daughter is more delayed. Books by Temple Grandin, who is on the spectrum herself, are often recommended.

The problem with your husband is that he is a doctor and probably expects his kids to be smart and perfect. That is what he wants to portray to the world. So if he ignores the disabilities, he can pretend they don''t exist. I really hate to tell you this, but we have a local family where the dad is a doctor and the mom a full-time mother who had 4 kids with 2 boys on the autism spectrum. That mom did so much to advocate for her boys as well as volunteer for things like the Special Olympics swim team. Unfortunately their marriage did not survive the stress. He left her and the children for greener pastures.

I guess my point in telling you that is to validate what you are experiencing, yet to also emphasize the need for counseling. The only thing is, he may not be willing to go for counseling. But regardless, you MUST be able to talk to your friends and family about this. They need to understand why your children act differently at times. You need their support and understanding to help you deal with everything. That way, if your husband cannot handle being the one you can talk to about the autism related issues, you can have another outlet for that. And you can try to maintain your relationship with your husband on another level. I really think staying married would be desirable for many reasons.

I will pray for you, too. Honestly, there have been days I wouldn''t have made it if I didn''t believe there is a Creator of the universe who is ultimately in charge.

{{{{hugs}}}}
 
Asscherisme, I''ve been thinking about marriage when the children have autism, or really any other major issues. There have been times when I wondered if it would be easier to parent if I weren''t married to my husband, especially when he wasn''t that involved and didn''t want to face up to our challenges. He has a tendency, like a lot of people, to take the path of least resistance. Here''s what I resolved in my own marriage: the only real gripe I had was that he disagreed with me in how to approach and handle our kids'' challenges. The rest of our marriage is very good, and this is only one issue, as all consuming as it sometimes is. If I were to leave several things would occur: I would not be home with my kids and would have to find full-time employment, I would have a shared custody situation, and we would most likely have to move out of district to a lower quality public school system. Not being home with the kids would mean I would have to depend many hours on others to watch my kids -- thus a lot less control over their care and the approach taken while I''m gone. Shared custody? If Dad isn''t on board while we''re in a pretty good marriage, how receptive is he going to be to my approach if there''s a divorce and shared custody? And what happens when the kids are at his house and not mine? Then there''s the whole moving significantly down in socio-economic class. For me, it was much more beneficial to work on my marriage and help my husband accept our challenges and work together on them than to leave.
 
Ascherisme just sending you my thoughts and prayers, everything I could say has already been stated so eloquently before me I am not sure what else to add. Thinking of you and your family
 
Sending you my warmest most comforting thoughts. I agree with those who have said that it is bunk that you can''t talk to friends and family and seek support. In fact, I have read that a key difference between those who cope well with adversity and those who succumb to serious depression is that those who cope well have people around to reach out to, and actively seek support. Honey, you HAVE to talk to people! You need to muster the resources around you. This is something worth having it out with your husband over. Maybe going to a counselor with him. Why doesn''t he want you to have as much support as possible? Is he thinking this is his fault or something, and is, perhaps, embarassed? It just doesn''t make any sense.

In case this is uplifting, one of my oldest, closest friends has a brother with Asperger''s, and although it hasn''t always been easy for him, he does have a meaningful and productive life, with friends, hobbies, an education, etc. He was also a chess champion and has many achievements to be proud of! So, there is lots of hope for a full life for your sons.
 
I am terribly sorry. It is not fair, and a burden for anyone to manage, let alone without support from your spouse. I know Asperger's is difficult, but they are bright and on the high end function wise, which is great. Many successful people (Bill Gates?) have forms of it and have really mastered it and made their lives work for them beautifully. I am terribly sorry about your daughter. Austism is more rare in girls, though I have a friend who has an autistic daughter. What were the signs in her? It is good you followed your instincts, as tough as it was to do so. And maybe you can convince your hubby to see the doctor with you, so he hears it from someone other than you. You need a lot of support right now. Please take care of yourself. As a mom we never want to hear anything like this, you are really being tested but you are strong...

As for your husband's view, well, I get it on an emotional level. This is hard for him, maybe he is not as strong inside as you are. Denial is a pretty strong thing. There are stigmas with certain disorders. BUT, facts are facts, and I assume he wants what is best for his kids. You are on the same page, I am pretty sure. Therefore, if you can get him to counseling or to the doctor, and he hears from them, it might be useful. Try to stress to him you are a team, you both want what is best for the kids, and you need to be able to talk to and have the support of your friends and the community at large. Now more celebrities are coming to the forefront and discussing their autisitic, ASD and PDD NOS kids, and showing that early intervention is important. They are shedding some light on this, which is sorely needed. I hope for your sake your husband can get a grasp on this. He is likely to have anger and feelings of frustration too, he will need support as well, for his emotions. Everyone copes in their own way, but for him to be there for them and you it would seem he does need to face and accept the diagnosis. Sending you support and hugs...
 
Asscher,

Maybe you and I can rely on each other? I am in the same place as you are now. My son James was about to be discharged by our doctor who thought perhaps he wasn''t on the Autism Spectrum. Now we aren''t so sure. We think there is something there and I am really scared just now. I have 5 kids, four of them are ''normal'' and James is so different. His behaviours can be very hard to understand and sometimes I despair as I just can''t seem to reach him. He gets stressed a lot now. He does have some fun though, its not all misery... but the strangest things can set him off.... like singing or whistling or me speaking trying to join in with him when he is playing. It all seems to be on his terms.

His Dad is completely in Denial land. He wears the Denial T Shirt and holds a Denial Credit Card! I''m serious, James can be sitting screeching and rocking and biting his hand and Gary will say ''He is so spoiled''.... I mean what??!!

The doctors are now saying that they can''t possibly say whether James is Autistic until he is older. (he is 3).

I love my son. I will do anything for him. I just wish he wasn''t the way he is. The future daunts me. I know that if James is diagnosed, my husband will support me. Problem is, I need him to see there is a problem now -not in a few years time!
 
Date: 12/26/2007 12:26:53 PM
Author: Maisie
Asscher,

Maybe you and I can rely on each other? I am in the same place as you are now. My son James was about to be discharged by our doctor who thought perhaps he wasn''t on the Autism Spectrum. Now we aren''t so sure. We think there is something there and I am really scared just now. I have 5 kids, four of them are ''normal'' and James is so different. His behaviours can be very hard to understand and sometimes I despair as I just can''t seem to reach him. He gets stressed a lot now. He does have some fun though, its not all misery... but the strangest things can set him off.... like singing or whistling or me speaking trying to join in with him when he is playing. It all seems to be on his terms.

His Dad is completely in Denial land. He wears the Denial T Shirt and holds a Denial Credit Card! I''m serious, James can be sitting screeching and rocking and biting his hand and Gary will say ''He is so spoiled''.... I mean what??!!

The doctors are now saying that they can''t possibly say whether James is Autistic until he is older. (he is 3).

I love my son. I will do anything for him. I just wish he wasn''t the way he is. The future daunts me. I know that if James is diagnosed, my husband will support me. Problem is, I need him to see there is a problem now -not in a few years time!
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Find a Doc who specializes in Autism, that''s the one thing I learned from Jenny McCarthy''s book. The time is now, the window and all. You have to reach him while the reaching is good. I hope that book is available in the UK. If not, I''ll get it back from Nan and send it to you Maisie. She got great results with her son, but went through heck to get them. As she said there is no how to book for autism. What she compliled in her book is amazing, and is in a way a how to guide... Lisa
 
My son has autism and was diagnosed at age three. I only wish that I had insisted on getting him referred to a pediatric neurologist earlier. Our pediatrician didn''t think he had autism but I trusted my instincts and pushed for the referral. My son has always been verbal but he has come such a long way since his diagnosis. At age three, he spent a lot of time lining up books, chairs at church (while the other children were playing), and turning pages of the Merck Manual incessantly. He didn''t even look up when you came in the room and I though he might have a hearing problem. Haircuts were an absolute disaster and any deviations in car routes were cause for tantrums. He is hyperlexic so he had a fascination with letters and numbers and was reading at age three. We did a lot of floor time with him and had tons of volunteers from our church come to our house to play with my son. We also paid some college students to work with him. He also received speech and OT. At age 13 and in seventh grade, he is in the gifted program and making all A''s-with absolutely no support at school. Early intervention and a strong support system are so important.
 
Date: 12/27/2007 12:47:30 AM
Author: Kaleigh

Date: 12/26/2007 12:26:53 PM
Author: Maisie
Asscher,

Maybe you and I can rely on each other? I am in the same place as you are now. My son James was about to be discharged by our doctor who thought perhaps he wasn''t on the Autism Spectrum. Now we aren''t so sure. We think there is something there and I am really scared just now. I have 5 kids, four of them are ''normal'' and James is so different. His behaviours can be very hard to understand and sometimes I despair as I just can''t seem to reach him. He gets stressed a lot now. He does have some fun though, its not all misery... but the strangest things can set him off.... like singing or whistling or me speaking trying to join in with him when he is playing. It all seems to be on his terms.

His Dad is completely in Denial land. He wears the Denial T Shirt and holds a Denial Credit Card! I''m serious, James can be sitting screeching and rocking and biting his hand and Gary will say ''He is so spoiled''.... I mean what??!!

The doctors are now saying that they can''t possibly say whether James is Autistic until he is older. (he is 3).

I love my son. I will do anything for him. I just wish he wasn''t the way he is. The future daunts me. I know that if James is diagnosed, my husband will support me. Problem is, I need him to see there is a problem now -not in a few years time!
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Find a Doc who specializes in Autism, that''s the one thing I learned from Jenny McCarthy''s book. The time is now, the window and all. You have to reach him while the reaching is good. I hope that book is available in the UK. If not, I''ll get it back from Nan and send it to you Maisie. She got great results with her son, but went through heck to get them. As she said there is no how to book for autism. What she compliled in her book is amazing, and is in a way a how to guide... Lisa
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Thank you Lisa. It means a lot to me that you would take the time to send me that book. I went to a book store today and they can order it in for me. I will definitely read it.
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Date: 12/27/2007 11:53:08 AM
Author: Heidi137
My son has autism and was diagnosed at age three. I only wish that I had insisted on getting him referred to a pediatric neurologist earlier. Our pediatrician didn''t think he had autism but I trusted my instincts and pushed for the referral. My son has always been verbal but he has come such a long way since his diagnosis. At age three, he spent a lot of time lining up books, chairs at church (while the other children were playing), and turning pages of the Merck Manual incessantly. He didn''t even look up when you came in the room and I though he might have a hearing problem. Haircuts were an absolute disaster and any deviations in car routes were cause for tantrums. He is hyperlexic so he had a fascination with letters and numbers and was reading at age three. We did a lot of floor time with him and had tons of volunteers from our church come to our house to play with my son. We also paid some college students to work with him. He also received speech and OT. At age 13 and in seventh grade, he is in the gifted program and making all A''s-with absolutely no support at school. Early intervention and a strong support system are so important.
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Heidi your post was wonderful to read. It gives me hope. Thank you for sharing with us.
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assherisme,
just wanted to know how you and your kiddies are doing? thinking of you....i had a fabulous afternoon away, shopping with my college daughter, then met her godfather in columbus(ohio) for a late dinner. i felt like a "grown-up" for a change. hope you are doing well!
 
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