Having a special needs child.
TV ClubHouse: Archive: Having a special needs child.
Myjohnhenry | Saturday, September 07, 2002 - 10:11 pm     I sit on both sides of the IEP table....as a parent and as a school speech/language therapist. As a parent I have had to advocate strongly at times, have used and educational advocate and been one meeting away from due process and have not always been looked at kindly by the school staff. As a member of the team by virtue of being a staff member I have had to deal with my share of upset parents, laws and regs that can be confusing, budget constraints (not just local school budget, but state and federal dollar funding connected to IDEA) , parents who arent involved, regular ed staff, etc. I always cringe a bit when people talk about bullying, screaming, etc. It is important to remember that IEP's are based on team decisions...not a unilateral decree by anyone person in the room. Granted, sometimes we as parents have to take an extra strong stance because we do know a side of our children that the school does not know, but we need to remember they also know a side of our chikdren that we do not always know and they are generally more knowledgeable about their area of speciality (at least we hope...although I am quite aware there are those out there who are not). As I said before, I have advocated strongly for an appropriate IEP and placement for my child but I went into every meeting well prepared, was knowledgeable about the law and my rights as a parent, AND was flexible about some things because this is a team effort and decision. (And just to add to the fun...NOT...I work in the same district). I fear I am not saying this well, but it is something I can be pretty passionate about having been a member of IEP teams in the public school system, early intervention, and in the dd system in one or the other capacity (professional and parent) for over 20 years. I have some great websites that I use and am on or have been on some great informational/support email lists and am always happy to talk to anyone privately...or on here (to a certain point). |
Landi | Saturday, September 07, 2002 - 10:28 pm     i have a 12 year old daughter with severe ADHD and SID (sensory integration disorder). i only know that to get through each and every day, is a battle. whether it be school, or home. everyone here at TVCH has been (whether they knew it or not) a lifesaver. this has been a place i can go and forget about all the things here. thank you, landi |
Kapow | Sunday, September 08, 2002 - 02:37 am     I also work in the MR/DD field in dianogstics and evaluation, particularly in autism spectrum disorders. For the last several years, my main interest has been in person centered futures planning for young adults and adults. The tstae in which I live is currently involved in many lawsuits ranging from quality of care in instititutions and community based residences to the issues regarding the waiting list for community services. I don't know if I could be helpful to anyone here, but if I could feel free to contact me. Also, it's awesome to see so many folks with this personal and professional interest area. |
Earthmother | Sunday, September 08, 2002 - 08:25 am     Myjohnhenry, I agree with you, however each school site's team is different. I assure you I did not start screaming until I was pushed to scream. Fighting two years for your child when you know there is a problem and being told "it must be something you are doing as a parent" was the last straw. I also work in the same district and it is much harder. I much prefer that everyone; school and parents would agree to do whatever possible for the benefit of the child, but many times it's the parent who has to take drastic steps to save their kid. Which is why I leave no stone unturned when evaluating someone else's child. |
Myjohnhenry | Sunday, September 08, 2002 - 01:50 pm     Earth...I totally hear you! Been there done that. Took me a year to get an evaluation, another year to begin to get services even close to being what was needed, another year and a meeting away from due process to get new evals and a switch from a 504 plan to a more appropriate IEP and I was able to compromise only because of a superwoman of a special educator who went above and beyond what was written in the plan (and without regard to what her supervisor approvedof)and really did not allow my child to suffer educationally once we got through the initial evaluation and placemnt process. She also personally took some big hits for standing up for me when I was labeled crazy and the cause of all the problems and for that I am eternally grateful. After we moved to another state I spent another 2 years trying to get an appropriate placement. Praise the Lord though...my persistence and advocating paid off and the kid is actually learning and happy to go to school every day. My point in saying that I cringe is because it isn't always like that, it shouldn't be like that, and I have been in support groups and to websites that advocate "fighting" from the get go and that, IMHO, is wrong. I too am quite thorough in my eval and have put myself personally on the line professionally by things I have done or said to help some parents. I wouldn't feel right otherwise. BTW...you saying "do whatever possible" helps put it nicely because it leaves open the idea that there are limitations we all face everyday (and not just in terms of IEP's ). |
Angelwings | Thursday, September 12, 2002 - 07:52 pm     I am in the process of getting guardianship of my daughter and I just thought I would share that it is going well. It was off to a very slow start. A court appointed person "for my daughter" came out to interview us and it went well. I think it is wonderful for all who have posted to this site. We will be having an IEP for Heather, in November. This one should be very interesting. I hope everyone has a great weekend. |
Earthmother | Friday, September 13, 2002 - 06:04 am     Good Luck to you and Heather, Angelwings. |
Urgrace | Friday, September 13, 2002 - 12:37 pm     My son needs, and I do mean needs, a new wheelchair. He became eligible to _have_ a new chair by Aug 1st. I've been making noises about it for a year now to get the red tape in the works and finished before Aug so that he would have it. The chair he has is also worsening his scoliosis and has never fit him! Guess what? He hasn't even been fitted for a new chair yet. Falling through the cracks of gov red tape is the pits. |
Vanillarose | Friday, September 13, 2002 - 09:17 pm     Urgrace, stories like yours break my heart and also frustrate the heck out of me. One of my families has a girl who wears a back brace to prevent her scoliosis from worsening and avoid surgery. It's about 3 years old or more, and she is growing and beginning to develope. I get so frustrated with how she must feel being squeezed into that thing, but the family has not been able to get approval for a new one. Best of luck getting that new wheelchair your son needs! I really feel for him, and you! |
Myjohnhenry | Friday, September 13, 2002 - 09:38 pm     That really stinks Gracie. |
Kapow | Friday, September 13, 2002 - 10:00 pm     Urgarce, you probably already know this, but....federal Medicaid money says that people can get a new w/c every three years.... and if the person is under 18, there are special rules about what is allowed. Depending on where you live in the US, rules vary. I do Family Support for a living, so if you want to contact me, feel free. I will be happy to provide whatever resources I can. |
Urgrace | Saturday, September 14, 2002 - 12:43 am     Hey, the three years are up and the money is waiting to be spent! It's the service providers that are getting on my nerves. We had appointments with the MD, the Neurologist, the wheelchair people, the home and community services, and finally the therapist for recommendations and measurements and it's only taken 'over' a year to get this thing going. Everyone knew that the funds would be available by August, so what's with the dragging of heels? Now we still have to set up appointments for fittings and sit back and wait some more for the 'wheels' to be ordered, shipped, then shaped and refitted and - well you get the picture. He might get it by Christmas if we're lucky. If I sound bitter it's because I've been begging and pleading for this to happen for much too long, while my son degenerates before my eyes. Puppies get more humane treatment. <vent brought to you by a mother who has been put through too many tests of patience over the last 31 years> |
Alinthehouse | Saturday, September 14, 2002 - 07:57 am     Grace, You have a right to feel bitter. In fact, you have a right to be downright mad. My girlfriend's son has musclar dystrophy. He no longer could use his manual chair, due to his loss of arm muscles. His friends were having to push him around school (11 year olds). She had to fight ever step of the way to get a motorized chair. She would go in for the fitting. After not hearing anything, she would call. They would tell her that she never showed up for the appointment. After months, almost a year, he got his chair. I could not believe the process. It was like, they never put the human needs as a priority. Besides what the son had to go through, the parents were at their wit's end. All I can say is fight, and fight some more. Don't back down. The process is not right! My thoughts are with you, Al |
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