Please help me with my autistic son... - Page 2

[friendly fire]

Everyone's given you wonderful advice here, so I will just share some of my own story.  I am mom to two boys, 3.5 and 5.5.  They are both Autistic.  I still don't know if life is going to get easier or harder as we all grow older.  I can honestly say the last three years of my life have been tough.  I am 5 weeks sober today!  I've spent much of the last three years self-medicating with alcohol and pot, and I take prescribed Prozac.  I like to think everything happens for a reason in life.....and while drinking heavily was unhealthy certainly, it perhaps helped me survive.  But, my youngest is now nearly 3.5 and has been attending school full-time, it has given me a chance to get myself back.  I even started a part-time job doing something I absolutely love today. 

Not only do you have the child to deal with......the child who simply is a puzzle, you've got people in your house, in your business, in public, and family to deal with....a husband to placate in many different ways, paperwork, meetings, doctor appointments....trying to do whatever you can for your child to progress.  oh, and then there's you. 

TV's a good thing in our household....although Daddy is an animator so my older child's obsession is possibly inherited!!  My child talks in metaphor.  He uses movie quotes in context in real-life situations.  So we encourage good stuff!!  My youngest is non-verbal and not interested in TV...rarely chooses to watch.  He's the physical one....the one who hurts me!!  Too much of a lover.  Sensory child.

Easy Does It and One Day at a Time!!!  Prayer!  Take care of you!  We do our best everyday!

[bntfam]

You have gotten great advice from the other posters, but I just wanted to echo everyone else in saying that YOU ARE NOT ALONE!!!! I agree that it is important for you to see a counselor, I'm very active in autism support groups in my area and every parent has needed counseling at one point or another. It's also really important for you to acknowledge that you and your husband are going through a grieving process. Most people think of grief only in terms of someone dying, but there are other situations that can send you into a grieving process. Getting a diagnosis of autism for your child does initiate a grieving response in your body. People deal with grief very differently. It is very common for husbands and wives to be a different stages of the grieving process at different times.

My suggestions for you are:

1. Get support and help for yourself

2. Get your son early intervention services ASAP. I would be happy to help you with this process and find local information for you. My email is [e-mail] I have a 3.5 year old and 18 month old both with autism. I am in contact with autism support agencies in many states.

3. Regarding your husband, I would let him know that you are there if he wants to talk but also give him space to grieve in his own way. Unless it jeopardizes your son's safety, I would NOT give him any instruction on how to interact with your son. It will just come between the two of you and will make him feel like he is always doing things wrong. Your son's life will be filled with therapists soon, and THEY can be the ones who give guidance on how to teach him and react to his meltdowns. Give him some space to figure out how to best interact with him, intervene if it becomes unsafe for your son (if your son is self injuring for example), and when things are going well really praise your husband and give him some confidence. I have seen way too many father's become distant from their autistic children b/c they are scared to try or scared they will do everything wrong.

4. Don't worry about putting him in front of the tv, giving in to him, etc. Don't worry about doing things right or wrong, your only job right now is for you and your son to be safe and happy. Very soon you will have therapists for your son in the home who will teach you how to teach him and handle his outbursts. They will give you the tools you need to be successful. Just focus on getting through the day right now, that is your only job.

5. Contact local autism support groups (again, feel free to email me and I can get you in touch with someone)

6. It is WONDERFUL that your son got a diagnosis at a young age and is TALKING (even if "cookies" is his only word). These are such good indicators of his prognosis. It is remarkable what early intervention can do, you will be amazed by the progress your son makes when he starts receiving quality therapy. The sometimes tricky part is getting good therapy and getting enough hours of it. Again, I'm happy to help you get started.

A poem from Sally Meyer (google "sally meyer autism poems")

How do I spell A.U.T.I.S.M. ?

A

I have to say the first emotion I felt was Anger, I was angry that this
had happened to me,I had been so careful,
I made an appointment with my doctor, when I was barely a month along,
I took good care of myself, I ate well,
and didn't abuse my body with drugs or alchohol, or smoking.
I felt such rage at first, this was not fair,
some women neglected themselves, and didnt care for the child inside,
and their child was perfect. Why not mine?

U

Unbelief..... denial...........you name it, I felt it. This was not
happening to me, I would wake up in the night, and it would hit me, my
child has autism, and then I would plug my ears, trying to stop the
voices in my head, I would bury my head in the pillow, refusing to
believe this was happening to us. It took me a long time to let it sink
in, and to this day, I sometimes forget, and then the realization hits
me, and it knocks me to my knees again. It takes all my strength to get
up. But I do, because I have to, I have to be there for my child.

T

Of course the tears, tears of rage, panic, frustration. Gut wrenching
tears in the middle of the night, somehow it always seems worse in the
night. The house is quiet at last, and there is time to think, to
ponder, to pray. Tears though are such a relief, without their outlet, I
would have gone crazy. But, I have held them back so many times, in a
store when someone makes a cruel remark,
or a child who approaches mine, then backs off with that 'look' on his face.
I refuse to cry then, because I still have my pride, and it although it
is tattered, I cling to it like a security blanket.

I

Isolation, oh yes, the isolation. Friends seemed to disapear into thin
air, when they found out.
Sometimes I wanted to scream "It's not catching, " but they wouldnt hear
me, they were too busy keeping their child away from mine. The phone
stopped ringing too, and people would turn away at Church, avert their
eyes when my child had a tantrum. The isolation is the hardest
thing.......... being alone hurts. At the time in my life when I needed
friends and family the most, the pain of them looking the other way, was
indescribable. But I have found friends, people who know the path I
take, for it is their journey too. For this blessing I am so grateful.
These are the true friends, the ones who are there for me, when life is
unbearable.

S

Sadness and Solace, I have felt the sadness of knowing my child will not
be like other children, I have wept many tears for him. I have spent my
waking hours, and sleepless nights worrying about his future, who will
care for him, what kind of adult will he be? Will someone be there for
him, when I am gone? There is such pain in not knowing, there is nothing
so hard for a parent, than realizing that one day, you will not be there
to take care of your child. And knowing that this child will always need
your care. But there is Solace too, and I have felt this peace,
I have learned to accept this Autism, I cannot erase it,
nor will I embrace it. But I have come to a feeling of peace, and I go on.

M

Mercy and Magic, Have mercy on me, It's so hard to raise a child when
others look on, and instead of holding out a hand to help, they stand in
judgement. Don't judge me, when my child acts out, when he screams
because something has changed in his environment, he doesnt do it
purposefully, he is only reacting to his feelings. I am a good mother, I
love my child like you love yours, I want the best for him, yet I cannot
give in to him. He looks to me and I must teach him,
just as you teach your child. I may do it differently,
because my child is different. He learns in his own way,
and I have to teach him in a way that to others may seem odd, or unusual.

Magic? Oh yes, there is magic. I have seen my child blossom, I have
seen him learn, I have watched his wonder, and rejoiced in his small
steps. His smile is magic, and his heart is gold.
I did not choose this journey, but somehow it is mine, and I must see the
roses, as I walk upon the rocky pathway. I did not ask for this, but it
was given to me, and I must be strong enough to bear it. If I cannot,
then I am lost, if I give up, who will take my place?
There is enough joy, if I look for it....... it will find me.

Here is a little blurb about autism and grief:

From Dr. Robert Naseef:

Grief may come in waves and it may take you places you never expected to go. It is a normal and natural process, which comes and goes. First of all realize that you are not alone in this and that your feelings which run the gamut from fear, to guilt, to anger, and depression, etc. are just the symptoms of a broken heart. So go ahead and look at your grief. Observe your thoughts and feelings. Accept them and be kind to yourself about having them. It doesn’t help to pretend to be positive when underneath you may be lonely, afraid, or sad. I have learned through my son’s 26 years that you don’t have to lie to yourself. You can grieve. You can complain. You can mourn. This helps you to go on, make the best of the situation, and enjoy life.

It is natural to wonder about what might have been. Your longing for the healthy child of your dreams or a typical life for you and your family may endure. You have to learn to live with that yearning, and you can do that, but you don’t have to lie to yourself about how hard this can be.

It takes time to heal a broken heart, and the difficulties that you must cope with everyday are nearly constant reminders and may trigger your grief over and over.

Secondly, try to accept yourself as you are—a kind and loving parent doing your best with your child who is undoubtedly doing his or her best under trying conditions. A perfectly lovely child with special needs can be very hard to be with because of their behavioral, social, or communication issues. But people often believe that when you love somebody, you love to be with them. When you don’t feel that and think you should, the guilt can be unbearable, and your heart aches. As you can accept yourself in a kind and compassionate way, your heart heals, and then the grief lightens. The sun comes out, and change is more likely.

Finally, accepting our pain and ourselves leads to accepting and enjoying our child and our family. This is the gateway to love and happiness. That deep connection that a parent feels with a newborn, or a child’s first steps, or first words can be felt at any moment when we are truly aware and attuned to our child. That deep connection is alive inside you. As you rekindle it, you can actually experience very deep happiness. That’s not to say that your life will be easy. But it can be happy and fulfilling.

Robert Naseef, Ph.D., and Cindy Ariel, Ph.D., are the co-editors of "Voices from the Spectrum: Parents, Grandparents, Siblings, People With Autism, and Professionals Share Their Wisdom"

[Emmeline II]

Originally Posted by friendly fire 
TV's a good thing in our household....although Daddy is an animator so my older child's obsession is possibly inherited!!  My child talks in metaphor.  He uses movie quotes in context in real-life situations.

Sounds like Abed on "Community".

[inky leeuhhh]

i know how you feel. my dd is 7 and still throws horrific tantrums. i don't do well with tantrums, so i always have to haul her into her room, put her on the bed, and walk away. she's big, so this is no easy task! the whole time she is screaming things like "no! get me out of here! don't lock me in my room mommy!" (she is never, EVER locked in her room, and i always tell her this, i think she heard the phrase on tv or something?). its just awful, i wait sometimes for a neighbor to call the police. once i have gained my sanity and controlled my own temper, i go in and sit with her and she will usually calm down. it is really, REALLY hard. dh does not understand autism at all, he thinks she is spoiled and bratty. he never says that (or hasn't for a long time), but i can tell that's how he feels. it's really hurtful, and i wish he would read the info i've given him or at least listen to me without looking at me like i was trying to make up excuses for her behavior. she has what many people call "high functioning" autism, which sort of makes things harder because a lot of the time you see a fairly normal little girl- then something like a big tantrum comes along to throw things off.

anyway, all this said i do think it is getting easier. she plays with other children now. she has more words to use. she is very bright and imaginative. even as little as a year ago i could not get her to even go to the neighborhood park, or anywhere that matter except the mall or supermarket. now she wants to go places. just keep thinking to yourself that things will slowly get better. hopefully as he grows, your hubby will begin to come around. is there any way you can leave information laying around? a pamphlet sitting on a table or something? he may not read it, but you never know.  i left a big bold list of "symptoms" of autism out to remind dh of what was going on. i know that probably sounds weird, but i think it at least helped him begin to sort of aknowledge that she had it. good luck!

[micah_mae_]

Originally Posted by inky leeuhhh 

i know how you feel. my dd is 7 and still throws horrific tantrums. i don't do well with tantrums, so i always have to haul her into her room, put her on the bed, and walk away. she's big, so this is no easy task! the whole time she is screaming things like "no! get me out of here! don't lock me in my room mommy!" (she is never, EVER locked in her room, and i always tell her this, i think she heard the phrase on tv or something?). its just awful, i wait sometimes for a neighbor to call the police. once i have gained my sanity and controlled my own temper, i go in and sit with her and she will usually calm down. it is really, REALLY hard. dh does not understand autism at all, he thinks she is spoiled and bratty. he never says that (or hasn't for a long time), but i can tell that's how he feels. it's really hurtful, and i wish he would read the info i've given him or at least listen to me without looking at me like i was trying to make up excuses for her behavior. she has what many people call "high functioning" autism, which sort of makes things harder because a lot of the time you see a fairly normal little girl- then something like a big tantrum comes along to throw things off.

anyway, all this said i do think it is getting easier. she plays with other children now. she has more words to use. she is very bright and imaginative. even as little as a year ago i could not get her to even go to the neighborhood park, or anywhere that matter except the mall or supermarket. now she wants to go places. just keep thinking to yourself that things will slowly get better. hopefully as he grows, your hubby will begin to come around. is there any way you can leave information laying around? a pamphlet sitting on a table or something? he may not read it, but you never know.  i left a big bold list of "symptoms" of autism out to remind dh of what was going on. i know that probably sounds weird, but i think it at least helped him begin to sort of aknowledge that she had it. good luck!

Thank you those are some good ideas :) My son is also high functioning. I'm glad to say that I'm doing better now than I was when I first posted this..but I know it can swing the other way any time.