Back to the grind

Here I am, in a hotel room in Amherst, NY; wide awake.  Its Sunday and I CAN’T SLEEP!  I’m here for date weekend with my girls doing some shopping and to see a show.  Its nice to be away, but I almost wish we had just stayed home so I could be sleeping in my own bed!  I miss Timothy too.  As much as he exhausts me most of the time I miss him.  Friday morning before he left for school he kept leaning into me- this is how he “asks” for hugs and cuddles.  Its the closest he gets to telling us he loves us.  I treasure it.

The past few weeks Timothy has done well.  We are so proud of him!  His bus transitions have been good, albeit a few tantrums on the sidewalk.  The new bus driver seems lovely (meaning she is tolerant) and school reports things are going pretty well there too.  They did call to say that he has scratched people at school-which is a new behaviour for him.  After a few days of me bugging the husband to cut his nails because I can’t do it alone, Timothy is now trimmed up.  I’ve made calls to our contacts at Lansdowne to follow up and see what they suggest when this happens again.  For us, this means more training.  Sometimes I feel like a hamster on a wheel……

Some good news is that after me bugging (I have to bug a lot of people a lot of the time for various reasons) the Respite department at Lansdowne for more hours- we have been allotted 6.75 hours per month for the past 18 months- we were granted an emergency $200 in funding.  Respite is basically programs, recreation and well, paid babysitting for our family to have some time off from Timothy.  Because he is such high needs 24/7 they have programs such as this for families to access (after the obligatory waitlist of course).  Timothy spent two weeks at Every Kid Counts Camp this summer which although fabulous, used up his year’s worth of respite hours in two weeks leaving us nothing for the rest of the fiscal year.  So I’ve been on the phone 1-2x per week harassing the poor woman who runs the program for more hours.  What happens is that now our “case” goes before a board of directors who then decide how crazy I must be before I am granted more emergency funding.

Really hope we get it.  A recreational day program for Timothy is about $160.  A two hour swim $50.  You see where I’m going with this….

The girls have been doing well too, they are happy to be back at school and less pleased with our hectic routine.  I’m hoping to squeeze in some swimming or indoor soccer for them in October.  Unfortunately due to our shift scheduling they end up missing classes at some point but it is what it is (that or nothing) and we do what we can do.

Some Happy Fall pics for your viewing pleasure!  Enjoy, T.




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