Are our children receiving enough help?

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iVillage Member
Registered: 03-28-2003
Are our children receiving enough help?
3
Wed, 06-25-2003 - 11:12am
My daughter was recently diagnosed with high functioning autism. She is 5 1/2 years old and will be going to kindergarten next year. She has a large vocabulary, however has difficulty putting words together in sentences. She is really smart academically, except has the maturity and awareness level of a 2 year old. I am wondering,how do you know if your child is getting enough help? Her plan for next year at school involves having an aid in the classroom keep her on track and speech therapy once a week. They also came up with a plan for social stories and other things I don't really claim to understand.

I also am getting help through my medical insurance so she gets occupational therapy one hour once every two weeks and speech therapy one hour once every two weeks. I'm sure this is all going to help her and she already seems to have made great strides, but being a simple person myself, I have no idea when enough is enough or when to get her more help. Although I believe the people in the school district are caring and helpful, I am also aware of the fact that their resources are extremely limited. (Oregon has the shortest school year of the nation, so the news tells us.) Are they only giving her one hour a week because it's best for her or because it's all they have to give? It's hard to know! How do we know if our kids are getting what they need? Do you struggle with that question? I find myself constantly thinking about it and wondering if I should be doing more or I should just sit back and see if what I have works.

Thanks for your thoughts!

iVillage Member
Registered: 05-27-2003
Wed, 06-25-2003 - 12:07pm
hi , well i'll start by telling you that my sons get 16 hours of ABA, 5hrs of pt , 5 1/2 hrs of ot , and five hours of speech. I guess it depends on where you live as to what amount of services you get from early intervention or CPSE. My thing is that there is never enough educational services for our children to get they need all the help that they can to function in this world. PUSH .........PUSH........and PUSH.........for more of what you want in your child IEP that is your right to help make that assesment for your childs future.You know what they are not giving you the services out of the kindness of their hearts , they have to give you more than that amount it is unacceptable amount of services

Jacklyn mommy of Jacob , Dylan ,& tyler all ASD.

 


Jackie~  Jacob , Dylan-James, &

iVillage Member
Registered: 03-26-2003
Wed, 06-25-2003 - 2:01pm
The types and levels of services should and do vary greatly from child to child depending on a number of factors. Age, level of need, areas of need, etc. You wouldn't provide a large number of OT hours to a child with very little sensory or fine motor needs. At the same time you shouldn't provide only a few speech hours to a child with significant language needs.

Also, the age and placement of a child makes a difference. For instance, when children are early intervention age it is not uncommon to have a large number of service hours, but when a child reaches school age many of those servicesare provided directly in the classroom. Plus with them being in class all day, where would you put that many extra hours without making them miss important classroom time.

The National Association of Sciences published a report on educating young children with autism just a year or 2 ago. Part of the recomendations stated that children with autism should be activily involved in theraputic activities 25 hours per week (i think at least 50 weeks of the year). Upon studying research they did not find that any one type of therapy had particularly better results than others. Rather they found, types of therapies should be driven by the individual child and how they learn and what their needs are. Those 25 hours don't neccessarily need to be "therpay" per se. For instance, swimming lessons where the child is activily involved in the lesson may be very good for some children. The thing that is important, is that the child be involved and not just sitting on the sidelines stimming or something of that sort.


That being said, best thing to do is take a look at all your childs reports. What are the biggest areas of need? Do you feel that there is an appropriate amount of services for those needs? Is she making progress in those areas? If you are finding that she is not making sufficient progress in those areas, then by all means ask for more in those areas. On the other hand, don't waste her precious time by getting large numbers of services in areas that she doesn't have as much or little need. You can put that time to good use with other activities.

Hope that helps a bit.

Renee

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iVillage Member
Registered: 03-27-2003
Thu, 06-26-2003 - 9:58am
It's SO HARD to feel that you're covering all your bases--because autism is such a confusing disorder. There are so many possible therapies, too, from diet changes to sensory integration therapy to computer programs...

I went through a process like yours when our son was first diagnosed, and got myself very wound up about "what's enough." After all, what if it turned out that inner ear therapy was the key, and I never provided it?!

I spent quite a while talking with other parents, doctors, therapists, teachers, and asking them which therapies they thought were most useful. I also spent some time thinking about my family's needs (I have a younger daughter, a husband, a home, a job)!

While some parents (usually moms) wind up spending MOST of their time on therapies, I didn't feel I could (or wanted) to do that. What I did find very useful, though, was Stanley Greenspan's floortime therapy (which I can do at home with my son, and we both enjoy a lot -- and if his sister joins in, then all the better). I am also finding support groups to be a lot of help, because other local parents can steer you to resources that you didn't know about.

Good luck! It sounds like your daughter's doing just great!

Lisa