People think I am a bitch because I say it like it is, stand up for what is right, I am not afraid to think out of the box, I speak up about how restaurants mislead consumers by saying Gluten Free Options, I bring the boys up to self advocate for themselves, I work hard for Autism Awareness and most of all I do not sugar coat the truth.
Here is what you may not realize - I live between worlds - Autism & Typical and it is getting hard to do. I have three boys with Autism, Donald 11 with Asperger's Syndrome, Karl 6 with Autism and Kyle 5 with High Functioning Autism. In the Autism world they are too high functioning so they do not qualify for services or people feel I do not understand the hard parts of Autism. In the typical world they are not understood because they do these differently and not allowed to do what typical kids do because they have Autism and they are not understood.
There is a vicious circle when trying to get help for your child when you are dealing with school, federal, state and town budget cuts. Then there is case managers, principles, guidance counselors, teachers, OT, ST, PT, insurance companies, IEP meeting, 504 meetings and Doctors appointments. Then we have sports, after school activities camps and town events. Where do my boys fit in, what can they do and what will they not be allowed to do.
I am going to start with explaining why we do not have Katie Beckett insurance. KB is an extra insurance to help families pay for services that private insurance companies do not pay for. It requires a LOT of paperwork, multiple attempts to get it and a lot of time. We have been very lucky to have a really good medical insurance so we feel it is wrong to get KB for our three boys when there may be families that need it more. I would be very upset to find out that a family that really needed it was denied but our family that doesn't really need it was approved. The problem with not having KB is that we cannot get a case manager to help us know what is available to us. I really wish Maine would change this as we are saving the tax payers by not having KB so we should be granted a few meetings each year for free. But that is not the case so we do not have access that other families have. To help our family and many other families I have gone to the School Department asking them to hold a 'Parent Resource Day for Special Needs Families' but they refused.
Without KB I am left to handle all the meetings, find resources and find the laws. This brings us the the latest reason some may think I am a bitch, fighting to have my son be allowed to attend camp.
Last Summer Karl did not qualify for Summer Services so he spent the Summer going to the beach and hanging out with his brothers. He had a great time but did not have enough peer interaction as I can only offer playdates so many times without response when I just stop asking. When school started Karl did fine but then he regressed a LOT. We had an emergency IEP meeting to create a plan to help. I could have asked for a specialist to come and observe Karl and give the school a plan but I did not go that route. I offered to observe Karl in class, this way it would not cost the school anything and I would be able to detect the issues faster. Karl was very overwhelmed so I suggested they go back to the basics with Karl as in bring back his picture schedule, I would attend assemblies and all field trips. It took about four months to get Karl back on track and handling changes better. You would think that his regression would make him a shoe in for Summer Services but it does not, he will not qualify again this year.
This school year is over next month so I am trying to be proactive so Karl will not regress again next school year by signing him up for camp. I went to the rec department to inquire about Karl having a 1:1 counselor for camp. I was told I had to hire an aid because the town does not provide one. I asked what the reasonable accommodations were for children with Autism. No answer but she would have the director call me. Later that day the director called and proceeded to tell me I had to hire an aid, again I asked about reasonable accommodations for a child with Autism. I got an answer about how they helped a blind child that attended camp but no answer for my question. I conceded to asking for a 4:1 child to counselor ratio but was told it would cost too much. When I explained that if small groups like this were available more kids would be able to come to camp so they would make it up in volume. I then was told that the camp barely breaks even and if they received more funds it would go to more field trips, like two field trips a week is not enough. He basically told me that more field trips were more important than ALL children getting to enjoy the camp experience.
I then called the Town Manager who clearly has no idea what Autism is and does not seem to want to know. After hearing that the camp budget was planned last January and there were no funds for extra counselors. Trying to be understanding to this, I offered to do fundraisers to help, he said he would look into it. The call came the next day with many excuses and the answer was no. Later that night a friend emailed me an article about camps so I forwarded it to the Town Manager asking him to reconsider. Yesterday I received an email back, here are a few parts that upset me.
"Students with disabilities are welcome but we need to ensure that there is not an undue burden for the program, the appropriate staff can be trained and available at the camp or program, all participants (with and without disabilities) are safe and the camp can function. "
I could not believe he said "undue burden" - Karl is a very well behaved so he would not be a burden. He needs extra supervision as he gets confused at times and does not understand things at the same level of his peers at times.
"Alternative option instead of the Town hiring a trained individual is for you to provide an individual who could work with your son on a one on one basis. You pay for individual and any taxes etc. The Town would require a background check, we do this for all counselors. We would provide the release form for this individual to sign for the background check. We would also reserve the right to say no to the individual if they were not qualified."
Alternative option, what about the Town providing reasonable accommodations??? Still no answer on that.
"You pay for an individual..." - Really I already save tax payers by not have KB Insurance and by helping the schools but I am to pay for camp, pay for an aid and taxes. We live on one income so where the hell am I going to come up with all that money. It was suggested by a parent that I do fund raising to pay for the aid but I have no faith that our community would help with that. I say this because I posted a status stating -
72 people in the group saw the post, a few liked it but no one commented so it seems there is not support or understanding that ALL kids should be allowed to enjoy the experience of Summer Camp. Now it is possible that they have sent letters or emails, but going by previous events I have a feeling that has not happened. I worked really hard to set up an Autism Awareness Game with The Portland Sea Dogs, only two families from my town went. My family and another that does not have a child with Autism. I know that there are a lot more families with Autism in town and I am baffled as to why they wouldn't want to go to the game. I worked very hard to make sure that this game was about the kids enjoying the game and not about fund raising. I set it up that all Autism Moms would get a small gift as a way of saying 'thank you for all you do (not myself). It was very disappointing that families came from Mass and up to 2 hours North of Portland but I could not get families in town to attend.
What bothers me about all of this is that The Town has broken the law and I'm the bitch??
So if I am a bitch because I will stand up for my sons RIGHTS than I am a bitch :)
Do know that this bitch would do the same for any child!!
Do know that this bitch -
Works with CRT to help prevent Bias...
Reads with little kids at KES...
Gives tea or hot cocoa to toll booth operators in the winter and bottled water in the Summer.
Drops everything to help a friend in need.
Donates to local fundraisers whenever possible.
Purchased and made a pasta dinner so GF kids could take part in the event.
Offered to give children a free gift so they could surprise their parents on Christmas morning, sadly none came in.
Helps coach sports when head coaches need help.
Stays up late to message a stranger in need of advice.
Helps families set up Sensory Diets for their child because they do not have access to Sensory OT as many insurance companies won't pay for it.
All while raising three boys with Autism, running a house and trying to build a business.
The funny part is I am not a bitch, I am Mom and just like every Mom in the world, I am doing the best I can to balance all of the needs of my kids. I just happen to be more outspoken so if you feel that makes me a Bitch then I am a Bitch and PROUD of it!!!!
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