The Denver Autism Wheel

Who’s Your Network?

Posted on: January 18, 2011

No I am not asking about your social network – your Facebook friends, which are definitely important (as soon as I can convince Kate that Facebook is sometimes worthwhile!)

But who is your network of support?  Not only for your child but for you and your family members? 

Just to set the stage of our day-to-day lives:  My husband Scott and I both work full time jobs.  We would love for one of us to be able to stay at home, but that isn’t our reality.  Ian is in 3rd grade this year.  Alexa is in Pre-Kindergarten at a local day care that is awesome.  Scott’s job has no flexibility in it at all – hours that are set in concrete of when he needs to be in the office.  My job, however, is extremely flexible.  I’ve worked long to get there and now that I have it I wouldn’t give it up for even more $$$.

We learned after a very painful Kindergarten and 1st grade year – that we needed HELP:

  • Help with the school and dealing with IEP and special education needs.
  • Help with after school.
  • Help with pre-teaching Ian concepts.
  • Help with social skills.
  • Help with physical activities and many other things. 

We assessed our major issues.  1.  We needed help in advocating with the school.  2.  We needed help with homework after school and pre-teaching him concepts.  3.  We needed help with social skills. 

We’re extremely lucky that we have most of our family nearby.  My parents, Scott’s parents are both here in town.  My brother and his family.  Scott’s sister and her family were here but just moved to TX…we’re still traumatized by that departure and the fact it was to TX but that’s another post. 🙂

My Mother-in-Law is a force of nature.  If I ever get really sick, she would be the person I would turn to regarding health care services.  Figuring out what’s needed, what’s really necessary etc.  She asks questions that most people don’t think to ask – and sometimes we’re all surprised by the answer.  Because of Scott’s work hours, it seemed natural to ask my MIL to help with advocating with the school for special ed services. 

You need professional help too, however.  We knew it would take years to become experts in Special Education Law.  So we found our ARC (Association for Retarded Citizens – links are on the right-hand side under Advocacy) chapter and found Nancy.  Nancy is a professional education advocate through ARC.  It took lots of meetings with Nancy, then with the three of us (Nancy, MIL and myself) with the school but we got what we felt Ian needed in place.

We also decided that Ian was missing out after school – a prime time for him but not for us.  Since we both work, we had him in the after school program at the school.  Ian was one of 50+ kids they had 8 adults trying to take care of and keep safe – which is ultimately their goal.  They do homework at after school, but Ian needed some extra help and extra prodding so it never worked out well for him.  And by the time we were picking him up and trying to do homework it was a nightly game of frustration for all of us. 

So after much internal debate and much financial juggling, we hired a college student to come pick up Duncan after school.  In 2nd grade, it was three days a week.  In 3rd grade, it is every day.  Our college student picks him up when school gets out, brings him home and they do snack, homework and if he’s fast he can get some play time in too before dinner. 

 We found a professional tutor who specialized in working with kids on the spectrum…we focused on three things – ensuring Ian was up to grade level in his areas of strength (math and reading) and work on a plan to get him up to grade level in his areas of weakness (writing). 

Now in 3rd grade, Ian is at grade level across the board.   

It’s not all about school.  Ian needs to work on his social skills too and we’ve got him in Cub Scouts and in a social skills group during the summers.  (Talk more about that in “Socially Speaking” soon.)

We also have other professionals, doctors, therapists (speech, occupational) in our network but we don’t see them as often.  Which I’m happy to say. 

A key person in my network is Kate and other Autie Moms and Dads.  We talk, IM, email, post and chat about the day to day things.  Ask each other questions through posts on boards ‘does your child do this, have you tried that?  Is this “normal” in our world?  My world would be very different if we didn’t have each other in it.    

So what are your goals for your child?  For yourself?  How can your network help??  

4 Responses to "Who’s Your Network?"

My husband is my main support…

It sounds like you have built an amazing support system and have done a phenomenal job advocating for your kids. I don’t happen to have a child on the autism spectrum but my kids have a few friends who do qualify so I am somewhat familiar with what it takes to do what you have done.

I am lucky enough to have a great support system of friends, family, and church in place and it gives me great comfort to know they are available if I need them.

ICLW #59

Visiting from ICLW. While our networks are very different, I think the task of identifying our support system, resources and needs is so so relevant to both of our situations. Thank you for the reminder, I’m so glad I stopped by.

Thanks!! I could not survive without my husband Scott…he reminds me that boys are different. That they play different and I need to let go and see what happens.

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