How do you handle finding out your quiet 5 year old that you thought was just autistic like his brother is actually severly delayed so he is basically a 2 year old in a 5 year olds body. How are you suppose to be ok when some docters tell you this like they tell you your kid has an ear infection...when you've always expected the worse studied and trained for the worse that you are suppose to have happen based on the family history but have something hit you outta left field how are you suppose to cope within a fraction of a second and look at your son and act like everythings ok when you can't stop crying inside and asking yourself why after evrything youve studied everything you've learned evrything youve prepared for is not what has been handed to you in a report thats suppose to help you how do you handle it???
I feel your pain. I don't know what to tell you really. Im here for support if you want it. Please NEVER go with the first opinion of a doctor. Doctors are nothing but a walking textbook and children aren't textbooks, they are living beathing, active, loving, little joys! specialist? Second opinion?
Im sorry you feel this way. Don't show your son you are sad and sad for him. I did that and he didn't know how toreact. My prayers are with you!
Hey Momma , I have a son that is 18 he is severely autistic guess what he is ok , I no with you preparing yourself for the worst then when you see it on paper it hurts bad deep inside I still get emotional at the I .E.P when they start talking reality to me about my son be socially 2 yr's old verbally about a 3 year old .. But How I deal with it is with Love ....... I can't not love him , or be happy he is the way he is ..the things that make him different is what makes him special ya no .. Acceptance is the key to the answer your looking for .. You can't change sweetie .. Being so sad all that is going to do is make the whole deal worse . Give your self sometime for it to absorbed in your mind body , soul especially . Then pick your self up and say you no what it is what it is . You as a Mom can an will be able to with both of your boys give them the happiness just from seeing you happy they can feel it ya no ............. So I so feel you on this , my gut hurts sometimes to but I have turned it into more a power tool to helping Kyle to try to be happy , To do the very bustiest I no that is not a word LOL , but make the best for him that I can . You'll be alright .. coming to terms with this isn't easy for any of us momma no matter how old or long they have had there autism . But just remember you can do it being happy no matter what the outcome ..... Just hang in there , you will be ok .. Were all here for you .. take it one day or one moment at a time if you have to .. much loves' to you . Bless ya . The tears will lesson . Takes time . Smile , he will be better for you if you smile you will feel better for you too .. Your not alone honey , see how many moms have been or are in your shoes right this very minute .. BE STRONG .HOLD ON ... OH YEAH my son was non verbal until he was 7 he is talking so well reading street signs , he is doing very very well . With the early intervention's so many kiddos are recovering ..
Honestly, my first reaction is to be puzzled. Aren't all kids on the spectrum "young for their age"? I mean, my daughter, 12, w/ PDD-NOS and quite high functioning, in some ways is like a 9 or 10 year old. Just about every --if not every-- mom on here says the same thing.
So.. take it with a grain of salt. I know one mom on here --Mitch-- was told her son Devin would never talk, etc.. Not true. Not true at all. So I'm wondering if this is really new information. Being on the spectrum, you knew your son was delayed, right? NO doctor can predict what kind of progress our children will make.
Big hugs to you. I know how devestating getting some of those results can be. But remember that he's the same child today as he was the day before you got the results. Now it's just a matter of figuring out how you and your family are going to respond.
When my son was diagnosed at 18 months, I was told that he would probably never talk, might eventually need to be institutionalized and was more than 50% delayed in many areas.
He's 4 1/2 now, the most social kid in his typical preschool with ever blosseming language, learning to read, etc. We've worked hard to help him get to this place with ABA, OT and biomedical intervention. For him it has worked.
Always remember that these are DELAYS, not COMPLETE HALTS. Our kids all make progress and push forward, but at their own speed. There are things that can help many of them - ABA, OT, ST, PT, biomedical intervention. My goal with my son is to help him achieve his own best potential and I will never stop working towards that.
Big hugs for you!!
Willsmomstacie
Will, diagnosed at 18 months w/ASD, non-verbal, no eye contact, no play or social skills. Now 4, VERY verbal, great eye contact, great play skills and increadibly social. He's on the road to recovery with ABA therapy and biomedical intervention.
Spread the word - Autism is TREATABLE!! Many stereotypical behaviors of autism are symptoms of underlying undiagnosed/misdiagnosed/unrecognized medical issues that can be addressed. Come join us and learn more about biomedical interventions for spectrum disorders. www.cafemom.com/group/biomedmammas
I pray that you will be at peace. Yes, I agree with many of the parents on this forum. Your child may have delays, but that doesn't stop him from being special and unique. Trust me doctors are not God. My son who has ASD and other developmental delays at 16yrs old reminds me of children who are 5 or even younger. Yet there are days where he is a 16 year old handsome boy who is able to have deep conversations. Glimpses of hope.
Never give up hope. Your son can reach great heights with your love and support.
A Touch of Peace http://tanyamerced.com
Quoting Snu:
Honestly, my first reaction is to be puzzled. Aren't all kids on the spectrum "young for their age"? I mean, my daughter, 12, w/ PDD-NOS and quite high functioning, in some ways is like a 9 or 10 year old. Just about every --if not every-- mom on here says the same thing.
So.. take it with a grain of salt. I know one mom on here --Mitch-- was told her son Devin would never talk, etc.. Not true. Not true at all. So I'm wondering if this is really new information. Being on the spectrum, you knew your son was delayed, right? NO doctor can predict what kind of progress our children will make.
RIGHT ON ...... AWESOME ANSWER ...... LOVE THESE MOMMIES ON HERE , PERFECT ANSWER FOR HER .. WE ROCK . HUGS .......
At the end of fourth grade my Autistic son's school psychologist announced that he was retarded. I didn't see it, for one thing he's way too crafty. So, I arranged for a private eval. he was due for anyway. He is not retarded. He underwent vigorous testing and yes, he is delayed because he is autistic. Some drs. don't separate autism from retardation, they are different. Of course Autistic children are delayed, they're autistic. Take him to someone else and see what they say and I totally feel for you. You know your son better than anyone. Don't just take one drs. opinion at face value and good luck!
You need to give yourself time to get through this, it will pass. I have a son with fragile X and autism and I think you may be able to relate to an old column I did for my local paper. Big Hug!
Grief can be a gift
Published: August 1, 2004, The News-Herald
With the dog days of summer upon us, I was sitting at this silly computer trying to find the direction for a column. My mind wandered far from summer to a personal experience.
It's a unique experience that only a parent of a child with a disability can understand: the grief that one experiences with a diagnosis of a disability.
These thoughts were brought on by the images of Nancy Reagan having to be coaxed from her husband's coffin, so weary and grief-stricken. It's a vision some of us won't quickly forget.
It intensified with a column I read for the Grosse Pointe News by close friends Mary Beth Langan and Ted Coutilish on "D-Day," which had nothing to do with World War II. "D-Day" for them was "Diagnosis Day."
Having a child with a disability is not something one ordinarily chooses. The beginning, the diagnosis stage, is one of the most difficult.
We all have dreams for our children that may be shattered with a diagnosis of a disability, be it physical or developmental.
With the loss of those dreams comes grief and all the emotions that go with it: denial, fear, guilt, blame, anger, sorrow and acceptance. Grief doesn't exclude things we can't see or touch.
Grief over our shattered dreams can be as intense as that for the death of a loved one.
Denial came first. "They can't be right, look at what he can do, at how bright he is?" Why do they measure our children on what they can't do and not by what they are capable of doing?
Fear of the unknown is always present. As a parent, you want to know as much as possible and have all the answers. Unfortunately, you quickly discover there are no answers for the important questions.
Will my child have friends? Will my child be happy? Will my child be able to live independently when he's older? What will happen to my child when I'm no longer able to care for him?
Guilt and blame quickly followed, which for me was an easy trap to fall into. After all, my son's disability, Fragile X syndrome, is genetic.
Prior to his diagnosis (he was diagnosed when he was 4) I had no idea that I had a 50/50 chance of passing a developmental disability to my child.
Anger became apparent when I questioned why this happened to me. I wondered why I had to be the one to pass it on and not one of my sisters? It didn't seem fair, but is life ever fair?
At times, my anger has been misdirected. My son has a condition that he was born with and he will die with.
At least that's how one insurance company explained a denial of service to a parent of a child with Fragile X syndrome. At this time, it's not curable and it's not terminal.
There's no Make A Wish or Rainbow Connection for my child or other children like him. Sometimes it seems as though no one cares about the quality of his life, or others like him.
Sorrow was never as intense as it was in the beginning. It's difficult to explain the depth of your sorrow: It was, and at times still is, immeasurable.
Surprisingly, sorrow didn't occur immediately, but happened a little later when hearing the words "mentally retarded" used to describe my son's disability.
Grief may never completely end, but its intensity can subside. From time to time it will resurface and I've learned to welcome it, as it gives me the opportunity to be reborn.
In the movie, "Harry Potter and the Chamber of Secrets" there is a special bird called a phoenix. The phoenix has some unusual characteristics.
When he reaches the end of his life, he bursts into flames and is reborn from his ashes. His tears can heal the wounded and he has the ability to carry incredible loads.
There are times when I feel like the phoenix. I need to burn up so I can start over. From the ash comes additional strength and courage to go on and never give up.
My tears may not heal the wounded, but they do heal me. Lastly, it feels as though the weight on my shoulders is almost unbearable, but I've managed to carry it.
With the passage of time my grief has become a gift. Another door has opened in which my life has become more meaningful. One day, my husband asked me to imagine our lives without our son.
I could describe it with a single word: "shallow." I've found you can live a "shallow" life just as easily as you can drown in shallow water. It's only a matter of choice.
Strangely, many years ago "perfect" was something I strived for. Now, I strive for less than perfect.
All because of a child who may never be "perfect," who may never be "normal," but who will simply love me with all his heart, no matter what.
A lesson learned through the process of grief.
I'm really sorry you are going through this! I know it is so difficult. But you have to stop and ask yourself......What does this really mean to the relationship between my child and myself.....Do I love him any less? Is this something I cannot tolerate? Does it make me ashamed of him or myself?
This is a condition that you did not create and the child certainly did not createt. I am willing to bet that the answer to all of the questioins above is a loud resounding NO! So, try to calm down and accept your child as he is. I know you do already. We should try not to be distressed by something that the child cannot help. Close yourself in the pantry, closet or on the back porch and scream and cuss if you choose. In fact I recommend it! Take care of yourself and God bless.....Beth100
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