Posted By mammabyrdie
Posted Feb 19, 2011
Dallas - This is for W
HauteMama - What a wonderful advocate you are for your child! I'm happy your son was able to get early intervention without a diagnosis. That is a credit to your determination.
Don't feel sad if your son prefers to play alone. My 8 year old is like that. Sometimes he'll play with friends and sometimes he'd rather play alone. When I'm volunteering at the school or running PTA board meetings I look at some of the other moms and would prefer to be alone too!
Thanks kathrynch for telling me about this thread! I normally come to tPF to escape parenting issues and never bothered to come in here!
You ladies have such beautiful children who are very fortunate to have the moms they do! I would like to think I've done the best I can for my kids, but then I wonder if I did something differently would the outcome of changed?
I have three children : S (18), A (17), & M (14). The oldest and youngest are both boys and both have been diagnosed with ADHD and Aspbergers. They have many of the same problems but are very different. M has benefitted from me knowing better what to do the second time around, but he has had his own set of difficulties.
S was diagnosed when the higher functioning Autism was still new in schools. He was always bright, but didn't communicate well. He was never clingy and would rather play by himself. He was tall for his age which only seemed to make matters worse. Everyone thought he was four when he was two and expected him to act like it. Preschool, kindergarten, pre-k, kindergarten again.....all were dismal failures. It took us until third grade to get the Autism Spectrum diagnosis.
Thanks to some very loving and hard working teachers S is on track to graduate from high school this year! I don't know what his future holds. He needs to work with a therapist on his social issues and we might have to take the technical school route, but he has made it this far and that is a big deal!
Sorry to write so much!! It's been awhile since I've summed it all up! I have to go run my "bus", lol, but I'll be back to check in and share about M!
Just wanted to say what lucky children you all have...they have amazing mom's who love them more than they will ever know.
Hi! You are welcome! I'm glad you found the thread.
luvshopping90 - I'm so happy to hear about you children's success! Way to stick with it!
emxowm - Thank you.
luvshopping90: Never second-guess what you did or did not do as a parent. Yes, I know that's almost impossible to do, but we all do the best we can with what we know at the time. I have no doubt that 15 years from now the diagnostics and treatments/therapies for Asperger's and autism will be far different. But that doesn't mean that I should have known more than all the researchers and doctors and educators at the time my child went through it. When we know better, we do better. But you did a fantastic job as a parent with S (and M) as evidenced by the fact that he is on track to graduate. What a wonderful success! That is GREAT, and an inspiration to everyone with a special needs child.
Oh, and I know all about the expectations on children who are tall for their age. My dh is 6'8" and all of our children so far take after him. They are always above the charts on height, and people always assumed they were much older as young children than they actually were, which would have been an issue under the best of circumstances. But since my DS had developmental issues, it only compounded the problems and misunderstandings other adults had about him. I taught him a lot of signs because his speech was so delayed, and many people assumed he was hard of hearing. I actually welcomed that assumption because it was easier to explain than a 3-1/2 year old who was mostly unintelligible to strangers.
To all of you.
I'm a part of that tall kids group too. I'm 5'9 and DH is 6'5. Why do people think they are entitled to have and share their expectations regarding our children?
I love what you said about treatment being different years from now. I'm so greatful for the moms with older children that didn't have near the resources we have now. THANKS MOMS and DADS! I met a woman at Disneyland whose 54 year old had Down's. I just wanted to hug and thank her for making it easier for me. She was there with her whole family. They were so loving and positive. I'll never forget them. They really were inspiring.
Joyce- you are so lucky to have an early diagnosis. Early interventionis the key to leading a full life! My daughter and I teach autistic kids in public school. The kids are not profoundly autistic but my sil's 33 year old brother is. He is non-verbal and they believe he understands everything we do and say. I have not been around him enoughto make a decision for myself, but I know we all welcome him at every family gathering. His father had a major problem accepting it, too. Unfortunately mothers don't get that option. I'mglad you have your mom, and your daughter. When my dd was expecting her dd, we heldour breath waiting to see if she would be effected by the Autism in my sil's family. 20 months later she shows no sign and we are thankful. Don't let that keep you from having another baby, though, my sil is 3 years younger than his bro and he's fine. I truly believe that special children are special gifts given to the mothrs who will love them the most. God bless you and all of you who have been so blessed! If any of you haven't r3ead "A Trip to Holland" it is an incredible essay written by the mother of a special child and shows how loving any child that's yours is the best!
I also want to say that we doa lot of work with Autism Speaks and God willing we will find a cause and a cure very soon! I urge you all to use their website for very valuable resources.
I have heard of and I believe read, "A Trip to Holland". So simple yet so profound. It helped me when I was having difficulty dealing with the change in expectations I had for my son once school began. It is also a relief that success in life is not dependent on success in school!!!
So now for my sweetie, M. He entered the world at a whopping 11 lbs 1 ozs!! Pretty sure I had undiagnosed gestational diabetes. But he was a sweet and adorable and happy baby. The older he got, the more "trouble" he got in. Cute when they are little, but I never knew what he was going to get into. He was a climber and a tumbler. He would stand on his head to watch tv. Great when he is at home, not so great in school.
He made it through pre-k for the most part, but we knew he had problems just days into kindergarten. He couldn't sit still, poked and cut holes in his shirts, and sharpened his pencils to death. He was diagnosed as ADHD and other health impairments. Oh, and we had speech. I understood him but no one else seemed to. He communicated and verbalized but just wasn't easily understood.
They are still organizing new autism spectrum programs in schools. He was in what turned into a good program by the end of elementary school only to be without in 6th grade. That was a rough year. I was told that he didn't need help writing his assignments down, he was a bright kid. DUH!! That was a low point where I almost took him out to teach him at home.
Thank goodness they put a program in place the next year that seems to be working. This is his second year in it and he is comfortable. I think he is a little too accustomed to having teachers make exceptions for him and have him pass a class though. So teaching him they won't do that in high school could be a tough lesson.
M doesn't seem to be quite as eager to please his teachers as S has always been and doesn't have any problem trying to talk his way out of stuff. A lot of that is probably a difference between the oldest and he youngest though, lol.
Fortunately, there is a wonderful program in place at the high school so I feel confident that M will at least have a chance. Sometimes it just gets exhausting with the emails and conferences with the teachers. You would just like to hear some good news, something positive.
I do also deal with the consequences of having two teenage boys on adderall in my house. Tempers flare and things can go from calm to chaos in seconds. How much of how they act is disability and how much is under their control?
My heart goes out to those of you whose children are non-verbal and have profound delays. It makes me feel that my children aren't in the same category as yours because I haven't been through as much as you.
On the other hand, because my kids look "normal", it is expected that they behave normal. I have been looked at as if I was a horrible parent because my child did not act appropriately in a situation. Because their disability isn't as obvious, no one sees all the work it took to get them where they are.
Does that make sense?? I hope so and I certainly hope it doesn't offend anyone! It's just if you see a child in a wheelchair you look at those parents differently than you do the parents of the child who is talking loudly and running everywhere they go.
Thank you so much for giving us a place to share, apparently I needed it more than I realized!!
^^^ Hugs to you!! It totally makes sense...and I am not offended at all!! We all have different challenges that cannot be compared. We just need to be there to support each other as we care for our special kids. And the Trip to Holland story is so perfect! Funny, I almost mentioned that to you today! Weird, huh?
This was posted on here many months ago and I loved it, so for those who haven't read it, this is for you.
It all began to make sense, the blank stares, the lack
of response, the way one of the kids will walk into
the room while I'm on the phone and ask to be taken to
the store. Inside I'm thinking, 'Can't you see I'm on
the phone?' Obviously not; no one can see if I'm on
the phone, or cooking, or sweeping the floor, or even
standing on my head in the corner, because no one can
see me at all. I'm invisible. The invisible Mom.
Some days I am only a pair of hands, nothing more: Can
you fix this? Can you tie this? Can you open this?
Some days I'm not a pair of hands; I'm not even a
human being. I'm a clock to ask, 'What time is it?'
I'm a satellite guide to answer, 'What number is the
Disney Channel?' I'm a car to order, 'Right around
I was certain that these were the hands that once held
books and the eyes that studied history and the mind
that graduated summa cum laude - but now they had
disappeared into the peanut butter, never to be seen
again. She's going, she's going, she's gone!
One night, a group of us were having dinner,
celebrating the return of a friend from England.
Janice had just gotten back from a fabulous trip, and
she was going on and on about the hotel she stayed in.
I was sitting there, looking around at the others all
put together so well. It was hard not to compare and
feel sorry for myself. I was feeling pretty pathetic,
when Janice turned to me with a beautifully wrapped
package, and said, 'I brought you this.' It was a
book on the great cathedrals of Europe. I wasn't
exactly sure why she'd given it to me until I read her
inscription: 'To Charlotte, with admiration for the
greatness of what you are building when no one sees.'
In the days ahead I would read - no, devour - the
book. And I would discover what would become for me,
four life-changing truths, after which I could pattern
my work: No one can say who built the great cathedrals
- we have no record of their names. These builders
gave their whole lives for a work they would never see
finished. They made great sacrifices and expected no
credit. The passion of their building was fueled by
their faith that the eyes of God saw everything.
A legendary story in the book told of a rich man who
came to visit the cathedral while it was being built,
and he saw a workman carving a tiny bird on the inside
of a beam. He was puzzled and asked the man, 'Why are
you spending so much time carving that bird into a
beam that will be covered by the roof? No one will
ever see it.' And the workman replied, 'Because God
I closed the book, feeling the missing piece fall into
place. It was almost as if I heard God whispering to
me, 'I see you, Charlotte. I see the sacrifices you
make every day, even when no one around you does. No
act of kindness you've done, no sequin you've sewn on,
no cupcake you've baked, is too small for me to notice
and smile over. You are building a great cathedral,
but you can't see right now what it will become.'
At times, my invisibility feels like an affliction.
But it is not a disease that is erasing my life. It
is the cure for the disease of my own
self-centeredness. It is the antidote to my strong,
I keep the right perspective when I see myself as a
great builder. As one of the people who show up at a
job that they will never see finished, to work on
something that their name will never be on. The writer
of the book went so far as to say that no cathedrals
could ever be built in our lifetime because there are
so few people willing to sacrifice to that degree.
When I really think about it, I don't want my son to
tell the friend he's bringing home from college for
Thanksgiving, 'My Mom gets up at 4 in the morning and
bakes homemade pies, and then she hand bastes a turkey
for three hours and presses all the linens for the
table.' That would mean I'd built a shrine or a
monument to myself. I just want him to want to come
home. And then, if there is anything more to say to
his friend, to add, 'You're gonna love it there.'
As mothers, we are building great cathedrals. We
cannot be seen if we're doing it right. And one day,
it is very possible that the world will marvel, not
only at what we have built, but at the beauty that has
been added to the world by the sacrifices of invisible
Im' so happy that you ladies are sharing your experiences. Thay all sound so familiar yet so different. As I said my son is know 20. That he is part of set of faternal twins. In the beginning I was told that I should not be comparing them because just because childre are twins does not mean that they reach milestones at the same time. As time went on I realized that was not the answer. No one knew the answer. Back then there was no eary intervention. When he was 5 we moved to a new city for a better school district. Not for him but for my other children. My son had been in special education since age 3. He was in what's call Trainable Mentally Impaired(TMI). In the new school district his new teacher was the best thing that happen at that point in my son's life. She insisted that he was not mentally impaired becuse he was just too smart. She insisted that he be tested. She believed he had autism. There was not much known about autism as nowadays. She educated herself and me about autism. My son was tested and sure enough that was it. The process took 2 school years. She was so wonderful and caring that I did not want him to leave her. He did leave for his new school and that was the beginning of meeting wonderful professionals who were experts on autism. Professional who went to an out of state university in the summer to learn about autism and bring it back. My son is so smart and there is almos nothing that he does not know. While that is wonderful. I realize that he will never be able to live alone or take care of himself. GOD has done so many wonderful things for him that I have to believe that when I'm no longer alive HE will always be there still lining everything up for my son's interests. In the beginning I cried and prayed so much. My prayers brought so close to God that I felt like I could reach out and touch him. I have no regrets about my son. I love him just as he he is and I sometimes wonder if I could change things would I. I don't believe that I would. My son takes no meds. I keep going on and on so I'll stop now. I find myself going on and on about him. I'm just like any mother I tend to brag about this boy. So ladies don't give up.Keep fighting for your children. Remember that most times things are not as bad as we make them in our minds. GOD BLESS