My pm here has not worked in at least a year. I don't know much about a Katy Beckett waiver except that it exists. I also know that each state is different. You might want to start a post here flagging Fla. families who know something about the Katy Beckett waiver. In NY, if a family qualifies financially, they get medicaid right away. If they don't, it's difficult to get it at all, tho there are exceptions under our form of the Katy Beckett. Lots of respite exists around here without having to qualify under Katy Beckett.((HUGS)) I'm so sorry that you are going through so much. I can't even imagine how hard it is. I know things will get easier for you, things are just especially hard right now. God has a plan for your life and it won't be all rough times. I think Tzoya has some great advice, she always does. I wish I could say something to make you feel better, but I'm not great with words. I'll keep you and your family in my prayers.tzoya, I just tried to pm you but your box is full
Wish there was something I could say or do to change things.
I think it's important though for you to have a life of your own, for your own mental health. Is there anyone who could watch your son for an hour or two per week to allow you to take a class, or do something just for yourself?
Hi Autumn,
I just want to say, hang in there. I don't know if you believe in God but if you do, sometimes I find talking to him helps me. Or whatever form of spiritual beliefs you have, now is the time to draw on those for guidance and strength. Everyone has a certain amount of challenges and I guess that is what binds us together here because we share a common understanding of the day to day grind and joy of raising children on the spectrum.
Do you have another person you can call who will listen and be understanding? I have such a friend and we do that for each other. She called me today and she wasn't afraid to tell me that she wished someone would just take her son with autism for the whole Summer because she has already "had it with him" and it is only the first week of vacation. Just being able to verbalize her feelings helped her soooo much and she knew I wouldn't judge her because I walk in her shoes every day too.
I think many days about putting my lovely ds in a special home and know someday that may happen. I am really trying to hang in there but summer is so hard and I miss beign with my hubby - our ds is so intense we cannot even have a conversation until we have child care for him. THANKS so much for the prayers sent my way, they are appreciated more than you can know -
I am thinking of you autumn, you are a wonderful mother
Sometimes it seems as though things will never change. Here I am with my 8 year old STILL changing diapers and STILL watching him every moment and STILL getting kicked and hit and STILL wondering if I will ever have a life. But I won't. This is life until heaven. Sometimes the sadness is overwhelming. Autumn, you are in the doldrums and if you look carefully around you, you'll see many a boat floating idly nearby. We all go through these dark days, but you need to realize they too will pass. The breeze will pick up, you'll appreciate something tiny like the sparkle of the water - maybe it will be your son's giggling that snaps you out of it tonight. Your son is 8! He is a little boy who is going to get better - maybe not the precise"better" that you dreamed of when he was born, but better than he is today. All autistic individuals get better when they receive love and intervention. Your day today will look different 5 years down the road. Aks yourself these questions - is your boy in a wheelchair or on a ventilator or does he need to have liquified food poured into a gastric opening? Is he blind, deaf, disfigured? There are families with multiple children on the autistic spectrum and there are many whose children have physical maladies in addition to the neurological disorder we all know. Please hang on, and if you are motivated, read some of the success stories that barrie somebody was collecting. Shoot, read anything on this board written by gtto. She is bright, clear headed, an advocate for our kids in a way, and completely nonverbal. But the words she writes! Read the stuff from Woodsman and other grown autistic individuals! Who knows what is inside your son's head? Just keep chugging and help him find his way to connect with the world. He will surprise you and take great delight in doing so! Its going to be okay! Autumn....seasons come and seasons go... I must and I will...keep you in our prayers...
i wish you all the best, and i encourage you to take charge of your life! we've all been there. i hope it doesn;t last too long Don't fret. We all go through similar feelings at one time or another. Try respite services if they are available for you. I have them in my area, but all of the funds have been exhausted for the year. Is your son in any kind of therapy? It's especially hard when we are around them all of the time. But even an hour at therapy or when they are at camp is a time for us parents to release all of our stresses. Hang in there. Times will get better. Have you done a search on potty training. I remember one a while back that gave great advice. I will post a link if I can find it. If nothing else it could give you some pointers. Don't stress too much. You are doing the best you can.
YOu have my sympathy, but I'm the kind of person who is practical, so I'll offer some advice, too. 1. What is in your son's IEP about toilet training? Has he made progress according to his IEP this past school year? If not, the school is responsible for increasing their efforts -- formally, on the IEP. They should provide you with parent training at home to increase the chances of success. There should be a formal BIP that rewards your son for every toileting effort. Sometimes the ONLY way to get a child with ASD to learn to use the toilet is to use their own sensory defensiveness against them. By this I mean, take them out of diapers 24/7/365 and let the discomfort of wetting be the natural, unavoidable consequence. Of course, this means a HUGE effort on your part and the part of the school, but sometimes kids with sensory issues "train" overnight once they learn that the comfort of diapers is no longer an option. At least think about it. 2. Have you investigated respite services? There are tons of government grants given to charitable organizations to give free or inexpensive respite to parent of developmentally disabled kids, teens and adults living at home. Check this out with the social worker at your child's school and/or google "respite" with the name of your home town or county. You should get some good leads that way. 3. Since your child is functioning at a level where residential care is a distinct possibility, he make qualify for a Katy Beckett waiver for Medicaid, even if you are over the income limit. This will give you TONS of support. It's meant to support families so that a child doesn't have to be put in residential care. 4. For most kids, things DO get better. However, not generally until they go through the onset of puberty, which can begin at about age 9. This can be dangerous, especially if a child has any tendency toward aggression. Seek help to prepare yourself for this NOW. See if your county has any crisis team who can come over to help in an emergency. If not, do not hesitate to call 911 in an emergency. My own son became VERY agressive by 13 and had to be hauled off to a crisis house or ER more than once. We were able to get him on a high enough dose of Risperdal to keep the aggressions under control, but that took months. In the meantime, having a crisis team help us was vital. YOu might try to see if there is anything that can be done, medically, for your son's aggressions now, before they become dangerous. 5. To reiterate, things generally do get better by late adolescence. For the most part, my 16yo is a pleasure. He is dx'd PDD-NOS, but we know other kids his age who are classically autistic and they are a pleasure, too. Even those who had to be put into residential care are much better now and some have come home. THANKS! I think some of my issue isI feel SOOOOO guilty because I already get respite, but it just is not ENOUGH! I feel so selfish because I LIKE being alone and when respite ends I feel sad and hopeless again. Don't feel that way. Autism sucks. Our kids don't, but their symptoms do. See if you can get more respite. Moms of asd kids HAVE to recharge. If this sadness persists, get to a doctor yourself. We moms of asd kids are more prone to clinical depression and can less AFFORD to be depressed. There is no more shame in having depression than in having asd. Each of our brains deals with autism differently. Mine has put all my negative feelings about it into a package called "Panic Attacks on High Bridges." I deal really well, day to day, but I cannot drive across a high bridge while I"m at the wheel (I'm FINE with someone else at the wheel) without having such a SEVERE panic attack that it's dangerous. Problem is, I live on an Island, so unless I want to STAY on LI all the time, I have to drive across high bridges or depend on someone else to take me. I plan on going to get meds for this because I've become sick and tired of feeling so incapable. But this panic attack thing allows me to go thru daily life undepressed. Clearly, your brain is functioning differently. But, just as with me, meds might help. ANother idea would be to try to form a support group with other moms who are dealing with kids with disabilities. They don't all have to have ASD kids. This past weekend, a mom I met when our sons were in preschool, 14 years ago, came back to LI for the bridal shower of her older son's fiance. This son is 10 years older than mine and 8 years older than the brother who was in preschool with my son, but he too had developmental issues (not autism) and grew into a fully functioning, indepedent adult who will be married in August. There was a time when none of this thought this would happen for him. But his developmental issues are long gone, he has a good job as a licensed backhoe and heavy equipment operator and is starting off a new life.
Keep your head high and dont give up.
Copyright Autism-PDD.net