I Feel Terrible | Autism PDD
TY everyone.
It is just frustrating because my son has had an IEP (or whatever the other one was called, IFSP?) since he was 2 years old and has had all the genetic testing, MRIs, therapy sessions every week. I still go through all of the same things that other parents go through. I do love this board and I am glad that you all put up with me here! 
[QUOTE=nakama]
We're all in the same boat.... Some are kayaks, some are steamships, but none of them are smooth sailing....
[/QUOTE]
[QUOTE=foxl] That was lovely! [/QUOTE]
I second that foxl. Nakama has put it nicely in a nutshell...
We are all out sailing in the big bad ocean... (though there's no big bad wolf chasing us). That's why we get tossed around in the storm. At times we enjoy the calm of the sea... but yet we brace again for the next storm. Then the lull comes and we enjoy the cool gentle breeze... Big boats or small boats, fast boats or slow boats, elaborate boats or simple ones... they don't matter... coz we are still sailing... together... in the not so bad ocean... when we have company.
That was lovely! Yes I know two kids far more affected than my daughter. They make me feel like a fraud, sometimes. But ... she needs help. The same help as their kids need, but not as much, maybe. I feel though that I have learned so much more compassion, empathy, insight, from learning about this, from reading here, it has been hugely valuable, to me, to the kids, to their parents, even. Overall it is good to be inclusive of the higher-functioning kids on the spectrum. For the school funding, and for the increased general public education about autism. We do belong there. I like this board so much for support because no matter the level of severity you can always find support. It is wonderful to know others are in the boat with you and rowing with the same oars every day. I have been hesitent to join a local ASD forum or support due to feeling like my son won't fit in or that others will have such greater difficulties that our will be pale in comparison. Keep coming back here- it is one place I always feel supported and welcomed. My friend has a severely affected son the same age as mine,when there together my ds seams so NT,I always come home thinking I am overreacting to ds's symptom's ,I feel so bad for her ,and Guilty about whining over the things my son does,(Not to HER of course). All I can say is Its your child,He needs support and you do to , I Say, Join a Support group and Try to connect to a Parent who has a HF child as well,My ASW has a AS son and always is supportive of me and my concerns. You FIT in Here,
The times that are hardest is when you do see how hard it is for the child to function around or with others--having trouble communicating (talking has never been a problem for my son, yet communicating is--he's 3 1/2 and cannot say if anything hurts, if he's hungry, thirsty, in pain, scared, etc--but he can say "well, actually, those are not jeans, they are pants" and many things like this); not being able to handle large crowds and rooms of people, lound noises, blocking ears; people talking to him when he doesn't initiate it; throwing fits because he's not comfortable with the company, scripting movie lines or acting them out to cope with a situation and on and on and on. I find that the friends/family who know us best, love us best. We do fit in with them-- You can get support here and reading support too. I think its a different journey when we have a special child--and sometimes it is marked with stretches of time when we just don't feel as if we fit in; marked with times of abundant growth for the child; sometimes marked with trials that seem to last forever; marked with great joy when he finally goes outside without arm or head coverings; marked with great progress when implementing a certain activity to help him over-come an obstacle that is 100 times harder for him to do than another child his same age; its a different journey we are on, a special journey. Learning how to "deal" with it and adjusting to where our child needs to be, rather than on where others think we should be, can be tricky--but you can do it--don't feel terrible. Feel proud and glad of where your son is and how "in tune" with him you are. Dance on the journey, don't fret about fitting in. Peace to you. I have met moms through our ABA playgroup with varying degrees of autism but we all have the same feelings for our kids and that bond of understanding each other no matter how different our kids are. I went to a autism event at the mall and I could tell which kids were ASD right away and I wondered if they thought the same when looking at Sarah..she goes real flat in public
I love hearing about all your kids and just wish we lived in same town:) as a therapist, i see dozens of kids every few months, and the first thing i learned was to appriciate that every single one of them needed every ounce of enthusiasm and creativity i have to thrive. i have students who are completely non-verbal, SIB's galore, with zero eye contact. in the same age group i have students that are mainstreamed w/o support and won't end a conversation (w/ appropriate give and take
Every parent on this forum belongs in the community, and all your children are lucky to have you! (us non-parents should be the ones in question
It can be hard for the kids with HFA as I saw in the social skills group my son was in.
It's more difficult in some ways for them, because they just don't "fit" in the educational programs offered for autistic kids, and they don't "fit" in the traditional educational system either. They fall in the cracks somehow. It is very stressful for their parents, causing tons of anxiety. They also worry so much about the social scene, because their kids want so much to have friends, but they just have such a hard time initiating and maintaining friendships.
As far as the moderate to severe kids, there are more programs for them, as far as school goes. My son is in a CABAS program, which is intensive ABA. Even with this program, there are 3 levels. When a child is in the highest level classroom, and they complete the school year, they are certainly not NT enough to be mainstreamed without support, although they are mainstreamed.
I remember someone I met at a support group who asked about my son, and if he was HFA. I told him that he is moderate, and needs lots of support/supervision, etc, but is a complete doll. He told me that his son has asperger's, and he thinks it's harder for asperger's kids that low to moderate autistic kids, because they are "aware" of their differences. He is probably right, because his son is able to express himself, so he knows what his son is going through, and it's hurtful to him as a dad. As for my son, at age 6, I don't think he's aware that he's different, or if he is, he certainly doesn't care
.
We're all in the same boat.... Some are kayaks, some are steamships, but none of them are smooth sailing....
the biggest problem is him falling through the cracks. He did not get
diagnosed till late, does not qualify for most services but stands out in
many ways. He wants friends but has not had any for the last year - he
used to run up to any group of kids excited to play along but yesterday
kids were playing right outside our house and he watched them through
the window before going to his room looking sad. He stared telling me
this year 'I am very different from other kids'.
While I am so greatful for all the areas where his impairment is relatively
light, being just different enough to know that you will never fit in right
comes with it's own set of heartbreaks.
I have felt more at home with other parents of special needs kids than
with parents of typical children. We don't all share the same worries but
we all have them.I tend to gravitate towards parents who are compasionate regardless of their
childrens functioning ability. I know that they are pulling for my sons
success and vice versa. I have two friends who have boys who are much
more affected than my son. They have been so helpful with their
recommendations and they are always encouraging. I on the otherhand so
want their sweet little ones to eventually say "Mama". On these boards, i like
hearing about these "firsts". They make my day. As a mom with a non-verbal son, don't feel like that at all. Just count your blessings, and work hard at keeping your son happy.
feelings expressed before. I am afraid our dd will fall through the cracks.
We are having trouble getting an IEP & the best preschool setting for her.
They claim she is "too smart" based on one test score, yet functionally is a
year + behind her peers in some areas. I know a local group by us has an
Asperger's support group--have you been able to find anything like that?
I can't remember your son's dx, but even if it's not AS, you may feel more
comfortable in that group. To be honest, I hate that even w/in the
parents of kids w/ autism community there is this...we should all feel we
belong & empathize w/ eachother's struggles..regardless of how they may
compare to our own.
I hope you can find the suppot your need. I feel for you.
Copyright Autism-PDD.net