Can I whine a bit?

[rooshy]

This is just a vent - don't mean to offend to anyone.

 

My younger son Jack is autistic and non-verbal, and he attends a before and after school latchkey program.  This week he's been suspended for acting out with the staff - scratching the arm of the head teacher and grabbing the arm of another teacher.  I am worried that he'll be kicked out of the program.  I work full time and can't pick him up unless I shorten my hours at my job.  My boss won't be happy with that.  I meet with the latchkey staff tomorrow afternoon, and I've left a voice mail for his caseworker at the county Developmental Disability office hoping to find out about a waiver for home aide to watch him while I'm at work.  I also work at a school for kids and adolescents who have autism.  They make Jack look like a walk in the park.

 

Why do I have to be the young widow?  Why do I have to be the single parent of a special needs child?    I didn't choose this, I sure as hell didn't ask for this situation.  I wish I could find a legitimate work at home job so this BS would't happen. I get so tired of seeing the happy families while thinking "DH could have gone to the doctor, he'd still be alive today" - DH died of sepsis caused from an infection that he left untreated.  ***whining is over***

[widowat33]

Doesn't sound at all like you are whining! It sounds like you are frustrated, as most people..widowed or not..would be in your situation. Being widowed just makes this all that much harder. We don't have that other person to help out and who loves our children as much as we do.

One thing I try to keep in mind is those happy families may appear to be happy, however sometimes looks can be deceiving. I remember at my husbands funeral another widow said to me she remembers watching a woman out her window hanging clothes on the line. The woman was married and all the widow could think is why is your life so damn perfect. Even early out I put that into perspective, how do we know how happy someone is? People can hide their emotions so well, and put on such a facade. Even still it is easy to be envious of two parent families. I know that feeling well...

Sending you hugs!

[Trying]

Vent away!  You have so much on your plate.  I unfortunately know many families with autistic children who end up in divorce because of the stress and toll it takes on 2 parents and you are doing it alone. I hope you find some additional resources to help you.

 

The truth is there are families with very little struggle and much good fortune and there are families going through even more painful times than you.  Neither changes your situation or how random and unfair life can be.  Something's will never make sense.

[canadiangirl]

That's not whining.  Rooshy the amount on your plate is intense and it sounds like your job can be intense (but rewarding) as well.  I am glad you have a place to vent- we are listening!  And I absolutely get the reliance on after-school care/latchkey programs and the fear that it will be taken away.  At my school the threat if you are late is that the program will contact Child Services. In the summer one of the camps had a policy that the kid risked being booted out of the camp if you were late.  While I understand why these things are in place, the pressure and stress it can add on us single parents -no family in town here- is crazy.  Not to mention the challenges that construction work poses to being on time in the first place.  Take care Rooshy - I hope things go more smoothly for your son and family.

[ieh21]

Whining is what the ladies at the posh private school near my work do when they moan about getting tickets for idling their car in the no-parking zone during school pick-up. This isn't whining. You're going to have to try harder :-)

 

(and my heart goes out to you and the challenges you face in your daily life. It isn't easy to do it alone, it really isn't.)

[Catnip]

My heart goes out to you.

 

My middle child, Jeffrey, has Cerebral Palsy. He was born at 24 weeks; he weighed one pound and eight ounces. He was in the hospital for 4 months. My oldest child was 19 months old. Jeffrey was delayed for the first 2 years, but then caught up pretty quickly. In the meantime, I had another son, and the two of them grew up together. Jeffrey has required many surgeries along the way. The first was his hamstring and heel cord, and a few months after that he was able to walk at the age of 4. He wears leg braces still. He also has severe scoliosis, so he had back surgery for spinal fusion. He has the metal rod in his back and does not bend.

 

Jeffrey is now 29 years old and has a college education. It took him 5 years to graduate, but he has a BA in public communications. I work here at the college and all my 3 kids got free tuition. I drove Jeffrey to college every day, including him taking night classes or summer classes. He does not do handwriting, and has always had an aid with him, or, in college, a note taker. Thank goodness for computers and laptops! He can sign his name. He speaks very well with no speech problems. He walks with a limp, but is not very steady. He now holds a fulltime job working in a long distance program recording and editing webinars. All computer work.

 

Is he independent? No. He cannot tie a bow; we buy old men?s shoes with Velcro and then take them to have a lift put in one shoe. He cannot button or zip pants.We buy only elastic waist pants. He cannot clean his ears, shave well, comb his hair, cut his fingernails or toenails, carry dishes or plates, will never drive a car. He does not cook, but he can use the microwave. I take him to work every morning and he takes a special needs bus home but it is not very reliable.

 

I will continue to work at least 10 more years before I can retire. Then what? I?m hoping my other 2 kids will help out with Jeffrey when I no longer can.

 

I will forever take care of Jeffrey for the rest of my life. That?s been my promise the minute he was born. My husband and he were best friends. Jeffrey was 20 years old and withdrew from 2 college classes and went on meds for anxiety when his Dad died. I also drove him to counseling, on top of going to counseling at college. He still takes the medicine and is doing well.

 

I used to say that when I got to the Pearly Gates I was going to say, ?So God, why did you make me the mother of a handicapped child?? Now when I get there I?m going to say, ?So God, how did you know I?d be a widow one day? Is that why you gave me Jeffrey??

 

Peace to you,

~Catnip

 

[widowat33]

 

 

I used to say that when I got to the Pearly Gates I was going to say, ?So God, why did you make me the mother of a handicapped child?? Now when I get there I?m going to say, ?So God, how did you know I?d be a widow one day? Is that why you gave me Jeffrey??

 

Peace to you,

~Catnip

 

Wow. Beautiful post! Loved it all.. This last part made me cry!

Sometimes I take my life for granted. Yes it's been shitty being widowed at 33 years old but I can handle it! I just hope that if I were in your positions I would be able to handle it as gracefully and wonderfully as you both do!

 

[canadiangirl]

 

I used to say that when I got to the Pearly Gates I was going to say, ?So God, why did you make me the mother of a handicapped child?? Now when I get there I?m going to say, ?So God, how did you know I?d be a widow one day? Is that why you gave me Jeffrey??

 

This. Got me too.  So amazing.  Thank you catnip. 

[rooshy]

Thanks for of your encouragement!  On Friday afternoon, I and Jack's schoolteacher met with the latchkey staff, and I am pulling Jack out of the program.  They made it clear that they would use any small thing to dismiss him from the latchkey.  I don't want to give them that opportunity.  Fortunately, the schoolteacher's aide (who has worked with Jack for a few years now) needs some extra income and will watch Jack before and after school for me.   He had a great first day today. 

 

Also, when I was calling school transportation this morning for the change in pickup and drop off, my ceiling fan light turned itself on.  I'd like to think that it was DH telling me that things would be ok. 

[THATgurl]

Rooshy I am a bit behind the times, but you just gave me a big grin

 

Here to end an ear - but it sounds like you are knocking it out of the park so to speak. You go girl.

[Eddienhp]

Hi Rooshy,

 

I posted this before I saw your response about taking your child out of latchkey

My autistic son had a one time incident at aftercare that led to a 3 day suspension. They were talking about kicking him out too. I wanted him to continue to attend because he has grown so much socially there. Also because I have to work to support our family.

 

I asked the school (public) to sent the behavior consultant there to make suggestions regarding techniques to the aftercare staff. Because they took so long to send someone, I got a behavior support person from NYS OPWDD (disability agency) to go to the school. She worked with them for a few weeks to train the staff. In addition the school gave my son a 1:1 aide at the aftercare.

 

The bottom line is if the school aftercare receives government funding, ADA applies and they must make reasonable accommodations for your child.

 

The result after two years: my son successfully participates in aftercare. The staff has a greater understanding of his challenges and are more comfortable with him. Some of them have become my son's biggest advocates.

 

If you want your child to continue in the program, don't give up just because of one incident. Like you said, you work in a school with children who have even greater challenges. Your child deserves to participate in society.

 

"Why do I have to be the young widow?  Why do I have to be the single parent of a special needs child?    I didn't choose this, I sure as hell didn't ask for this situation" Oh, yes! What a bad hand we were dealt. Some days I get so damn angry about it. Today is one of those days for me.

 

Many hugs,

Eileen

 

Here are my new thoughts:

It is wonderful you found someone who is available and wants to care for your child. You won't have to be on edge wondering if/when the latchkey program will ask your child to leave. Shame on them for their horrible attitude and mentioning they would be "looking" for reasons to remove your child from the program. I hope your son enjoys his time with his 1:1 caretaker and you enjoy peace.

Eileen