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

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asscherisme

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I love the animinity of the web sometimes. My husband has this weird thing that I'm not allowed to discuss certain things with friends or my own family for support and my heart is just breaking tongiht. Just breaking.

I have posted before about how my oldest son has aspergers syndrome (high functioning autism) and how difficult it makes things for him and for our family as a whole.

I also have another son who has aspergers syndrome as well. He is younger and thankfully more laid back but its definately there. I have to admit I have choosen to be a bit in denial about him becuase I just could not face that TWO of my kids have autism. So I have kinda been denying it. Even after a second opinion, it has not sunk in fully a full year after his diagnosis and second opinion. He does recieve special services from school though so he is being taken care of.

One nice thing about aspergers at least is that often the diagnosed are highly intellegent which is the case with my boys.

So, my 4 year old daughter has always been a little off. Just not where she should be and has had some disturbing and super difficult behaviors. At 4 (almost 5) she acts much younger than her age and its been scaring me. She is verbal and does talk, but is in her own world, very unaware of her sourroundings, and too many iissues to list. My husband is in COMPLETE denial anything is wrong.

So, last month I decided to have her evaluated by the same practice that diagnosed my boys. I was not prepared for the results.

I had an appointment tonight with the lead psychologist who did the evaluation and I was told AUTISM. Yes, a third child with autism.

Not aspergers but full on autism and that I'm lucky she has speech. I was not prepared to hear this. Not all, nope. She is far far below developementally and not the super intellegence like my boys. She is very behind in all areas.

It was recommended to me, the next step is to contact our school distrct to try and get her into their preschool program for support and make sure she has an IEP in place for kindergarden next year.

I have not been able to stop crying and just feel devastated.

THREE OUT OF FOUR of my kids have autism. THREE OUT OF FOUR. I don't know how this could happen. It is not fair and I don't know how on earth I am going to handle this. I have zero family suport and my husband will freak at me if I tell my freinds.

Thank GOD my 8 year old daughter does not have autism. She is such a ray of sunshine and so beautifully Neural Typical.

So much for going back to grad school next year. Thats just going to have to wait because I need to focus on her to make sure she does not sink any more into her little world and engage her to pull her out.

You want to know a real test of marriage, having kids with autism where one person does not acknowlege it and chooses to ignore it.

I really don't know if my marriage can survive this long term. I really really don't.
 
Oh honey. I can''t imagine how much weight you are towing. It must be exhausting. I am so sorry that the latest report came in with confirmation.

I realize it is easier for me to say this...than it is to do. You get your crying out...and get your tension out somehow. Go to a sporting goods store and get a punching bad. You make yourself knock it silly. Transfer all that energy of anger and disappointment and get it out. Get rid of it. If you have to punch it 15 times a day...then do it.

You have a job to do. You have already proven how strong you are. You are a power mom! You didn''t buckle before and you aren''t going to now. 3 out of 4. OK. That is the percentage you are dealing with. You have 4 children. Blessed X 4! You just keep your eyes focused ahead and take one step at a time. One day at time.

Your marriage is not going to fail. You need one another. Get your groove on and reconnect with your partner. You need that strength and you both have what it takes to keep the other standing. You aren''t giving up on anything.

Get connected with a support group of other mothers towing the same load you are. You will also gain strength in others understanding and commensurating with you. You will feel a sense of belonging...and surely much support.

I so wish I could hug you and comfort you. I would hold that punching bag for your and encourage you to hit harder. SO HIT HARDER NOW.

§
 
AIM, I am so very sorry to read this news. My heart really goes out to you and your family. Of course, {{{{huge virtual hugs}}}} abound.

I can''t even imagine how hurt you are or how stressful this latest news is. DH and I have not been blessed with children yet, so I can''t speak to you with firsthand knowledge of how you might be feeling. But I am feeling so terrible for you reading your post, you sound like you are at wits end over this.

Please hang in there. It''s unfortunate that your husband feels that you shouldn''t share certain things with your personal support network of family and friends, and that he is in denial about your youngest daughter''s diagnosis. It seems that you are going to have to stay strong here and hopefully he will come around a bit when he is able to digest this news and think about it and its effects on you and your family. Is there someone close to you that you could talk to tonight or tomorrow morning that he wouldn''t have a problem with? Is there a counselor you can call just to have someone to converse with and spill out all your emotions?

I''m glad you came to PS and vented a little...I wish there was something I could say to make you feel better. I do know that this is a wonderful and caring community and we are all behind you here. Whatever you feel you can''t say to anyone else in your life right now, at least you can say it here and not be judged by anyone. Stay strong, and please type away. Take care of yourself...and know that none of this is your fault. There is not something inherently wrong with you, and you didn''t do anything to ask for these special circumstances. God never gives us more than we can handle.

I really hope for yours and your children''s sake that your husband will have a breakthrough and decide to be by your side as a loving support for you. If that doesn''t happen, that is not your fault either. Your children and I''m sure all of your relatives and friends love you, and they will be your soft place to land if he cannot be that for you. My best wishes go out to you, and I hope this post finds you in better spirits. Please do not lose hope.
 
Thanks for your replies. I am going to call my son''s therapist tommorow. She has helped me one on one before without my sons when I get overwhelmed by them. Always makes me feel a little brighter after talking to her. So I am going to schedule an hour with her to discuss my daughter''s diagnosis. At least a safe place to vent with someone who gets it. Thank goodness for her, I feel lucky that we found her.
 
Date: 12/19/2007 2:53:39 AM
Author: asscherisme
Thanks for your replies. I am going to call my son''s therapist tommorow. She has helped me one on one before without my sons when I get overwhelmed by them. Always makes me feel a little brighter after talking to her. So I am going to schedule an hour with her to discuss my daughter''s diagnosis. At least a safe place to vent with someone who gets it. Thank goodness for her, I feel lucky that we found her.
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So glad to hear you have someone to talk to. Thanks for letting us know that...

Everything will be ok, asscherisme. I know you don''t know me from adam, but sometimes you just need to hear that when everything seems to be crashing down around you. You''ll get through this, and all the other challenges life will throw at you.
 
Asscherisme, I am so sorry you got this diagnosis. It is heartbreaking and very, very difficult.

I don''t know where you are, but I would see about finding a support group for parents of autistic children. If you aren''t able to discuss it with family and friends, make some friends who also have autistic kids. I would take full advantage of any programs out there for early intervention because I think it does make a big difference. I highly recommend Engaging Autism by Stanley Greenspan, if you have not already read it. He talks about motivating autistic kids to *desire* social interaction and the philosophy is that when kids are motivated to interact socially they have a better chance of doing it (makes sense to me). For a lot of high functioning autistic children, if they get what they need in the form of early intervention while their brains are still plastic, it seems like a lot of kids develop to a point where they can function in the world and can grow to have jobs and support themselves.

I''ve seen some press coverage of even celebrity moms who were given an autism diagnosis and told their kids would never talk, say, "I love you" or develop emotionally that their kids DO develop. I can''t remember the one specific actress''s name I''m thinking of, but she was on 21 Jump Street with Johnny Depp years ago.

My point is, there is still hope, and the more help and assistance you get for early intervention, the better her chances. If your husband is not open to that, I''d frankly ignore him and get it going on my own. My husband was kind of the same way -- he didn''t want me to ever say the word autism, like it''s some shamefull judgement on us as people. I think that''s bunk so I set about dealing with experts on my own and pretty soon he was on board. If your school has resources, take advantage of them whenever possible, but you''ll still have to get help on your own. I would not depend on the schools for all your resources -- it won''t be enough.

PS is a great community full of support and wonderful wisdom from caring ladies. You can always talk to us.
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I am so so sorry you are going through this with a third child. My heart goes out to you, and if you are religious, put your trust in God that it will all work out.

The book that Lumpkin posted, Engaging Autism, is a good book. I recommend it to some teachers I work with. I do believe that your dear sweet daughter will thrive because it seems as though she has a great mom. Get on the school ASAP, and put her in an early intervention program if your school has one. Also, make sure her teachers in kindergarten are aware of her quirks and behaviors, this will help her to make an easy transition.

As far as the support system goes, my heart breaks for you that you do not have anyone there to help you out, or just listen when you need to talk. And I''m sure you''re hubby will come around. Maybe you are just the more level-headed of the two!
 
AsschiMe, I am so sorry to hear this and wish there was something I could do to help you. I will be keeping you in my thoughts and prayers.

Lump, was the actress with the autism diagnosis Teddi Siddalls / Siddons who is married to actor Gary Cole? She was in some eighties stuff and movies. I know they have an autistic daughter and do much with charities and to help others and their children.

Just had a look and I don't know if this link will be helpful to you AsschiMe, but I thought I would post it anyway as you never know - it might open a helpful door for you somehow.

http://www.garycole.net/causes.htm
 
Asscherisme,
I am so very sorry about the diagnosis. I can''t even begin to imagine the pain/feelings/shock you are going through. Since I know very little about autism other than the usual general knowledge, I would recommend support from an autisum support group (which you can also remain anomynous) and am thankful that you are able to get early intervention for your daughter. I''ve read that the earlier they go through the "exercises", the better the results are and that many can experience as close to normal adult lives.
 
Asscherisme -- dear child, I don''t know what religion you might be, and it does not matter to me, I just wanted you to know that if it would not offend you, I would like to put you on a prayer list. I''m Episcopalian, and my church has a round-the-clock prayer chain; it is a full time ministry of the church. You and your family would be constantly prayed for; we will pray for hope, improvement, support for you, an easing of any related health issues this might be causing the children, the finances to provide the best care possible, and yes, we do believe that healing is possible, so we will also pray for that.

I do not want to presume that you are a Christian, and I''m not about to proselytize here because I know it is forbidden. If you have any objections to being ministered to by our prayer team, I''ll understand; just let me know.
 
Asscher,

I am so sorry you are going through such a traumatic experience sans the support of your husband and family and friends. If you need to talk, you need to talk, a therapist is a good place to start. I''m at a loss regarding your husband''s wishes for you to deal with this all by yourself; you need support and love, not isolation. Find a way to get it, please, for your sake and the sake of your children.

I have spent a lot of time working with children who are autistic and their families as a substitute teacher (a local school has adopted me as their go-to-substitute), and as a result learning about PDD and autism (but I feel as though I''ve only scraped the surface). I do see hope for these children, when their parents are loving, attentive and focused on finding solutions. Some of these parents refuse to allow their children to wear the autism label, others don it proudly. That is a personal choice that they have to make. It''s the work behind it that really matters, accepting the help these children need and providing it to them, as the parents best know how.

Please, be kind to yourself, and see if you can''t get your husband into counseling. He needs to be a part of the process.

Again, I am so very sorry; what you are going through must be very painful.

~K
 
Date: 12/19/2007 7:43:59 AM
Author: Lorelei
AsschiMe, I am so sorry to hear this and wish there was something I could do to help you. I will be keeping you in my thoughts and prayers.

Lump, was the actress with the autism diagnosis Teddi Siddalls / Siddons who is married to actor Gary Cole? She was in some eighties stuff and movies. I know they have an autistic daughter and do much with charities and to help others and their children.

Just had a look and I don''t know if this link will be helpful to you AsschiMe, but I thought I would post it anyway as you never know - it might open a helpful door for you somehow.

http://www.garycole.net/causes.htm
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I think her name is Holly Robinson. I''m not sure if that''s HER name or the name of her character, though. She''s black, really pretty, well educated, and has 3? kids. Her autistic child is a boy.
 
Date: 12/19/2007 10:30:08 AM
Author: HollyS
Asscherisme -- dear child, I don''t know what religion you might be, and it does not matter to me, I just wanted you to know that if it would not offend you, I would like to put you on a prayer list. I''m Episcopalian, and my church has a round-the-clock prayer chain; it is a full time ministry of the church. You and your family would be constantly prayed for; we will pray for hope, improvement, support for you, an easing of any related health issues this might be causing the children, the finances to provide the best care possible, and yes, we do believe that healing is possible, so we will also pray for that.

I do not want to presume that you are a Christian, and I''m not about to proselytize here because I know it is forbidden. If you have any objections to being ministered to by our prayer team, I''ll understand; just let me know.
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When I got my first son''s diagnosis I called Unity and asked to be in their prayer circle. I was very specific requesting strength, perseverence and resoursefullness. I believe I was blessed with all of those when I needed them most.
 
AIM--I''m so sorry to hear about your situation. I would be devestated too! I''ve always taken the concept that we are given only what we can handle...so that means you must be an extra strong person. After you get through the initial shock, you''ll be ok.

On another note, I have lived through your world of having a husband who doesn''t want me to talk about issues with friends & relatives. I''m sorry to say, that is a bunch of bunk. You need support and that''s what friends & relatives do. You & your hubby should seek counseling so he can understand that YOU need to be able to talk about this. Support comes from some of the most surprising places and you certainly never want to slam the door on any options. Is there a reason your husband doesn''t want you to talk to the friends & relatives? With mine, he FORBID me to talk about stuff because he felt things were personal and didn''t want "me airing his dirty laundry." He thought that we should all put on the happy face for people. Well, that just doesn''t work. Even if you say nothing to people, they can read it on your face & in your eyes that something is up. They may even be hurt that you don''t trust them enough to share what is bothering you. I really hope you can make your husband understand that sharing isn''t bad.

Good luck and prayers with you!
 
I''m so sorry. I am also finding it hard to wrap my head around the 3 out of 4. That seems like it should be impossible. I truly admire your strength though. You really need some support. I wish I could help out. If I lived nearby, I surely would volunteer to be part of your support team. I know you are doing everything you can for your kids, and that is wonderful. I''m sorry about your husband''s denial. Maybe you could talk with the therapist yourself, and see if there is a local support group for parents. You need to vent, it''s very important. Take care. Bless you.
 
Oh AIM, I''m so sorry to hear that you''re struggling right now. I''m joining in on the group hug, and sending you all my best wishes and support.

I hope that your DH will come to terms with your childrens'' diagnoses so he can join you in working with your children and helping them thrive.

BIG HUGS.
 
Wow. I cannot imagine the pain, anger, frustration and sorrow. 3 out of 4 is just heartbreaking, especially as the highly intelligent designation doesn''t apply to your youngest daughter. I''m so sorry honey.

I have to agree that your DH''s position on friends and family is bunk. You BOTH need support and a lot of it. I agree that you need counseling to be able talk to someone, but I also believe the two of you should also seek therapy to bridge the distance between you.

My thoughts and prayers are with you. ((HUGS))
 
Asscher--my thoughts go out to you--what a truly difficult situation. Support is absolutely mandatory and most importantly so, from you husband. You two absolutely need to be a unified team and a shoulder to cry on. You may not always have the same views on how to deal with things but you should always feel like you are there for one another. Don''t forget to take care of yourself--I am sure you pour your heart and soul into caring for your 4 kids (my gosh--4 kids in general deserves a medal so you are a super, amazing mom--and don''t forget it!!!!) I hope that your hubby will address his denial and make the most out of a difficult situation. There is sooo much your family can offer to the community in terms of raising awarness and teaching tolerance and acceptance etc.....
 
I am so sorry!! You have to read Jenny McCarthy''s book, am forgetting the title. I read it and sent it to Nan, because it was such an inspiring book. Anyway, she has such a great way of writing and gives great advice. She talks about how there is a window with Autism and how you need to pull them through that window while it''s open. She really made great strides with her son.... HUGS!!!
 
Date: 12/19/2007 12:17:44 PM
Author: Gypsy

I have to agree that your DH''s position on friends and family is bunk. You BOTH need support and a lot of it. I agree that you need counseling to be able talk to someone, but I also believe the two of you should also seek therapy to bridge the distance between you.


My thoughts and prayers are with you. ((HUGS))
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I just want to say i''m so sorry and agree getting in a good cry is very normal and healthy. I can only imagine what you are feeling/going though. My thoughts and prayers are with you as well.

i also want to say i agree with gypsy and whoever else said your hubby''s position is bunk. that is just the craziest thing. Plus, if you are close with any of your friends and they are a around your kids, they will just figure it out. Many times it''s the other mom''s in my mom''s club that will pick up on things in other mom''s kids and alert the mom b/c she is just too close to notice. My guess is your friends and family probably already suspect something is up, at least with your daughter, if she is so behind and in her old world as you suggest. they may just be to afraid ot mention it or ask you. There is just no way you and your hubby should carry this by yourselve''s especially with so many wonderful support groups out there. I can see possibly surviving on your own with only one child being diagnosised but 3? lady, you really will need help and advice from others in the same boat. big, big hugs to you.....
 
We are here for you; huge hug sweet Asscherisme! Sending lots of prayers for strength; you sound like such a good mom.
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I''m so sorry, Asscherisme. *Hugs*

Talking to a therapist is really healthy and probably the best thing you can do right now. Have you considered trying to get your husband to go to counseling with you?
 
I'm so sorry to hear. I can't imagine how frustrated you're feeling right now.

I saw Jenny McCarthy on Oprah talking about her son's autism and she just ROCKED. I'm going to read her book on the subject even though I don't have any kids. So though I haven't read it yet, just from watching her interview, I'd recommend checking it out as Kaleigh mentioned.

We are all thinking of you and sending love and support your way. *hugs*

ETA: I hope your husband can face this and come out of his denial. But even if he can't, you will be strong for those kids and you WILL go on.
 
I''m so sorry to hear this. Just remember that there is strength in numbers, so the more advocates of friends and family that you have on your side, interacting with your kids, and being there for you, the better!
 
My heart breaks for you, I am so sorry. Hang in there and work with the therapist. I think it would really help if you could reach out to family & friends. I''d have the therapist talk to your dh about that. Family & Friends who love your family divide the sorrow & double the joys, so its good to share. Perhaps he can see it that way. My friend who has an autistic son really feels behavior modification therapy is a big help with her son''s autism.

hugs.
 
I''m so sorry to hear this news . Are their any support groups you can join? That will be a wonderful way to make friends who you can talk freely to and learn ways of coping.
 
I am so sorry to hear this! I don''t really have any helpful advice. Is there a local support group you can join (for parents of children with Autism)? Maybe your DH would be okay with that. Frankly he seems embarrassed and ashamed with is silly. No one knows the cause and you and your DH should not be blamed. I am sure your friends and family would be very supportive and nonjudgmental. They probably *already* know. Maybe you could go to couple''s therapy. Don''t give up yet. We''re hear for you in the meantime.
 
Oh, I am so very sorry.

My nephew has 3 boys, and two of them have autism, one profoundly so. My nephew has a friend who has four children, and three of them have autism.

You are not alone... I hope that you can find support and comfort in sharing with and confiding in others who are dealing with similar issues as you are.

xoxoxox
 
I am so sorry! I truly cannot imagine what you are going though. Please go talk to your son''s therapist and take your husband with you. There is no excuse for his position in this.
I am sending good thoughts and prayers your way, I know you and your family need them.
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As long as no one else knows, your husband can pretend it is not there, but it is best for everyone if he sees the truth of the situation and becomes part of the solution.
You mentioned that your boys are very intellegent. One of the main causes of it is genetics, so if your other children are gifted, your youngest probably is to.
I went to school with two boys with asperger''s syndrome. It was clear from the start that there was something different about them, but it wasn''t a big deal. One didn''t want to be "normal" and made few friends, but the other did. When he said something that the rest of us wouldn''t say, we would all laugh about it. He was the top of our graduating class at a high school for gifted people. He has graduated from Brown with honors and has been with the same girl for five years. He may not have been popular, but he had friends and is happy and with such a devoted mother as yourself the same is truely possible for your kids.
The ther never seemed unhappy and graduated with honors as well and did very well at the school of the mines, so they managed to be happy despite their differences.
 
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