Who can help my son? My son is ten years old. He is nonverbal. His is autistic. Who can help my son? He can not write. He needs hand over hand assistance to write letters and numbers? Who can help my son? He has a short attention span. He has difficulty following verbal instructions. Who can help my son?
He can dress himself. He is not able to bathe himself. Who can help my son? He has sensitive hearing. He doesn’t like his hands and fingers touched. Who can help my son? He is extremely intelligent and bores easily. He isn’t able to demonstrate his knowledge unless he is using hand over hand to access a communication device. Who can help my son?
He has OCD. He flips through books from back to front. He doesn’t play with toys. He wants what he wants, when he wants, and there is no reasoning with him or changing his mind. Who can help my son? He has a limited list of acceptable foods that he will eat. He can operate the tv, the remotes, and his radio, yet he can’t or won’t operate a gaming system. He wants to, but is determined that someone else does it and he watches. Who can help my son?
He rebels against being made to do new things. He fights against being made to work and attend to tasks. Yet, if he is being asked to do something he likes or gives him what he wants, he will do it. Ask him to get a food item out of the pantry to good his favorite meal, he’ll do it. Ask him to get a cup so that he can have a drink, he’ll do it. Ask him to get an item off of the table you need, because you need it, he won’t. Who can help my son?
Really, is it too much to ask? I want practical help. I want real assistance. I don’t want pie in the sky solutions from quacks that think that because a certain therapy has helped other children, it will help my son. I want a real evaluation from people that have years of experience working one on one with autistic children instead of an evaluation from doctors that only sees a child once. I want a real plan of continued therapy that won’t bankrupt me. Who can help my son?
Am I the only one? Let me here from other parents. Let our voices, our pleas, be heard.
32 comments:
This is going to sound... unsympathetic... but trust me, I do have sympathy! But the person to help your son is YOU.
I have Asperger's myself and have known that before I had my boys. Both have autism, my oldest with Asperger's and my youngest with PDD/NOS.
I took them to children's hospital in Boston to be evaluated and diagnosed. After I received the resulting review, I implemented EVERY recommendation they gave. Through trial and error, I found what worked for my kids.
Also, search for the clinical report "Management of Children With Autism Spectrum Disorders" from the American Academy of Pediatrics. It describes the scientifically proven options available for treatment. You can download this report for free from www.pediatrics.org. It was published in 2007.
There is no one cure, one fix for all children with an ASD and not knowing your son (despite all that you shared!), no one will be able to tell you what will or won't work.
Intensive therapy provided by a trained professinoal for a minimum of 25 hours per week is necessary and parenting training and involvement is a must. That is true for any intervention to work.
That being said, I feel ya!!Even understanding the disorder from my own perspective has not always helped me help my sons and sometimes I just wish there was a magic wand or a magic professional who can "fix" some of the bad things my kids do.
I know that 25 hours of professional therapy will help, but I can't get that here. The only thing I can get for my son is a couple hours a week of Speech and OT.
I am doing the best I can for my son. I am homeschooling him because he responds better with me and actually makes progress with me working one on one with him. I also believe that he could make a lot more progress if he had more therapy than what it is available here.
I wish I could "talk" (online) with "Heather Babes". My son was diagnosed with Aspergers (still looking for a second opinion) and I worry that he's never going to lead a "normal" life and that he'll always have to struggle and he won't finish school (school is the biggest challenge we have with him).
I wish I had some wonderful words of advice. I don't. All I know is that you have to be your child's best advocate because wtihout you no one else will do it.
My son received physical, occupational and speech therapy from 5 months old to 2.5 years old. EVERY DAY a therapist of some sort came to my home. It was like my entire world revolved around his therapies. It was stressing and frustrating but it's just what had to be done.
I guess you just have to keep on the doctors, do research, do a lot of "trial and error" things until you find something that works. I think all people are different so what works for one might not work for another.
Sending cyber hugs and prayers to you that some day SOON you'll find the answer to all your questions.
I wish I had an answer for you and myself.
Everyone thinks they have an answer end then end they don't.
Tammy this is a tough one. My answer won't help you or your son. I personally believe we are given only what we can handle. Though we don't always want it or agree with it, there is a reason your son is 10, nonverbal, autism, and other issues. I always wonder why me...and why my child? Of course, I don't have an answer for that...but I do ponder that often. Saying that....
I am very sorry you don't have any other supports around you. That would be extremely challening. I guess more and more I hear, I am very lucky to have what I do have. Gannon does get 15 hrs of therapy pd by our state each week. We are allowed much more but I can't even fit it into our day. Gannon then goes to a structed Autism room for 3 hrs each day also. Getting lots of ABA, floortime, and the typical school stuff such as PT, OT and speech.
I don't want to say I am in the same boat as you, but Gannon will be 5 yrs old this week. We have shelled out thousands of dollars on speech from every possible place around here in my state. Nothing has worked....he is still nonverbal and has Autism. Why does speech therapy or pecs work with some kids but not mine? Gannon has had 4 years of therapy...but still is stuck. Verbally he is what 9-12 months....I have done to some of the best here in the midwest with zero results. It is very frustrating for sure. You just want to help your child and help them get out of life what they want to...but yet that task seems out of reach.
I have not been living this life as long as you, so I am sorry I can't offer any advice. Sadly, I know many parents in my support group who have sent their kid to FL for treatments, lost homes, only to find out the treatments didn't work. I honestly think because Autism is a spectrum...nothing will work for every one. The brain is so complicated, who knows if they will ever find out even one cause. I have had parents tell me just do the diet and he won't have autism anymore...Well I know that is NOT the truth. Gannon is getting better on the allergy free diet, but that is because he has true allergies to foods. He has since 3 months of age. As far as the other "experiemental" solutions...yeah I am too scared to try any of that. Chelation kills off everything...good and bad. So we won't ever do that. We finally just got his immune system built up for the first time. Crainal chiro care...well I just don't want someone pushing my kids skull around....and I refuse to put my kid thru any medical stuff unless I know 100% it will change my son's life for the better!
Not that I want to compare but, sometimes I feel like Autism is alot like Childhood cancer. Why does the exact same course of treatment cure one child's cancer, but does nothing for the other with the same diagnosis? Why are some children called back to heavan leaving their parents with empty arms when all they wanted was to be parents? I think Autism is one of the hardest "disabilities" because it does effect every aspect of our children's life. Not just one area.
I am so sorry I can't offer you better advise or tell you who can help your son. All I can say, is that everyday I know my son needs me. he didn't ask to have autism. He wants to talk...I can tell thru his eyes. I try and imagine how I would feel living that life....it makes me humble and in my darkest hour remember as his Mommy...I am all he has. Best of Luck. If I hear of anything...believe me I will email ya! (HUGS)
Heather is correct. You are providing him the most help by homeschooling him. What the parent training does is help you configure a lifestyle that promotes his growth and development.
Have you considered moving to another town for more servces?
Many parents of children with autism are blogging. Reading them can give you invaluable information and support. Look for these blogs to enter the circle of bloggers I read: Everyday Adventures, For the Record, and Elvis Sightings. Barbara
Hey Tammy. first a BIG HUG. you need a break. I know you do.
And i really wish we could find you some affordable treatment/therapy for an extended amount of time.
I also wish I knew what to tell you and what miracle fix to give you, I have no experience in Autism, but I do pray for you to find the strength, guidance and help you so desperately need.
You are stronger then I am, as I could not have gotten as far as you!
Hugs, love and prayers!
Tammy I hope you can find the answers you are looking for. It is heartbreaking....
I'm so sorry - I can literally feel the frustration in your voice. I hope you find the help and services you need.
((((TAMMY)))) This really breaks my heart. I pray that you will find the answers that are needed for him. I agree that we need more help for families dealing with this!
I could feel your frustration and sadness at not being able to get the help your son needs. You are doing him and other kids with autism a service by getting the word out there.
I am so sorry Tammy. I wish that I had more experience to help. Just let me know if you need anything. Keeping you in my thoughts and prayers.
(((HUGS))) My son's teacher just asked me if we've ever had him tested for Asperger's, and I've been saying he fits the profile for 2 years. We are driving him over 2 hours to Philadelphia to be evaluated again in January.
I know it's hard to not live near the things your child needs. Unless you can just pick up and move or drive greater distances, unfortunately, you can just do the best you can with what you have.
Awe hun I dont have any answers or wisdom for you. But I can tell you take a bit of time for you away sometimes that is all we need for clarity!
Oh, Tammy! I am so sorry about this!
First, WHY can't you get any real help for your son where you live? That boggles my mind. There has to be something. Maybe with the school district?
Second, have you looked into the diet and therapies that Jenny McCarthy swears healed her son of Autism? Just an option.
You need to call, write, scream at whoever will listen and make them see that your son needs help that you cannot provide.
Write your representatives, senators..whoever.
I will be praying for you and your family.
((((HUGS))))
((hugs)) to you and your son! I hope you find the help and support you need. We are currently going through something similar with my oldest but not for autism but dyslexia. It is nearly impossible to find good help that is affordable and will actually do the trick. My thoughts and prayers are with you!
First hugs to you. I know how if feels, I also have a 10 year old autistic son.
It sounds like you have been and will continue to try all sorts of things until you figure out what works for him. When my son was first diagnosed, we started him on the GF/CF diet. It was hard because he didn't want to give up old foods and try new ones, but eventually he gave in. It really made a big difference in him. He started talking soon after. After a while we stopped noticing any more progression and we stopped the diet. He didn't regess at all.
He has a one-on-one TSS that's with him all day at school. That really helps him as well.
He's not on any medication, but we're looking into something for his attention. You can see pic/videos of my son here.
http://www.mykidsarefun.com
I wish you the best!
Janine
We tried moving to a big city, but ended up with less help for my son. We ended up moving back to our small town. The school system here does what they can with the limited resources they have. It just wasn't enough. I'm homeschooling him now, but he goes to his old school once a week for 1 1/2 hours of socialization with sp and ot therapy at the same time.
I am getting him set up for private OT and SP. His evaluations are this week. I don't know when they will actually be able to start him. They will probably set him up with 45 min. of OT once a week and 1/2 hour of sp twice a week. He used to go there when I homeschooled him before. Now that I am homeschooling him again, I thought that it would be a good idea to get him back in with them. Hopefully, insurance will pay. There has been a lot of changes with his two insurances in the past year.
Oh my gosh Tammy! I never realized all that you go through. What an amazing mother you are. He is lucky to have you.
I really hope that you find what you need to help him. It has got to be out there!
WOW! Makes me sad to read this. My 10-year-old daughter is perfectly healthy (knock on wood) and most days we take that for granted. I can't imagine being in your shoes.
I wish you much luck and happiness.
Hugs and prayers!
This is a tough job. I think what you need more than anything is SUPPORT FOR YOU. People that understand what it is like for you in your house on a daily basis. I have been around autistic kids and they are all so different. I know it is hard for you and I hope you find others that can help you through all of this! Stay strong mama!
I am so sorry that you are struggling to get your son the help he needs.
My 2 1/2 year old daughter is currently in a special needs playgroup (about half the kids there have an autism diagnosis). She does not have a diagnosis beyond SPD an speech delay, at this point. We are waiting for her to get an appt. for a full evalution at Hasbro Children's Hospital. The wait is dreadfully long, but in the meantime she gets combined speech/OT once a week and the 2 hr specialty playgroup twice per week.
It is frustrating to deal with some professionals who don't seem to know wth they are doing, esp. when it comes our kids.
While we all try and be civil while seeking help sometimes we can't be afraid to be a "bitch". No one else is going to fight for our kids. If we have to go over someones head or make a nuissance of ourselves, it won't keep us up at night years from now. Not pursuing the most for our kids will.
I think you are doing what you can .. but by putting this post out there you can find a way to get a support system in showing what has worked for others in your situation as a mom and your son's situation too!
I don't know what to say, as I can't relate ... but I hear the love in your voice!!
HUGS
Oh how I wish I could give you an answer that would "help" with such a tough thing. I can only imagine the frustration of trying to get the best when the question is what is the best?
My cousin is the mother of two autistic boys that I know, are truly incredible. You are incredible mother and I want you to know that. (((HUGS)))
My boys don't have these types of struggles thankfully but my sister has three out of her four kids with autism along with a plenty of other issues and I know she too is looking for answers. How can it be that so many of her children have it and yet mine are fine? They have full time aides in school and plenty of therapy but they are verbal and they do get to lead semi normal lives. I'm so sorry for your situation, just know you aren't alone!
Oh Tammy, I had no idea what you have been going through. I'm so sorry! I think it's great that you did this blog. I'm guessing it has helped a lot of people. Even if it's just letting them know that they are not alone. I hope you find the answers and help you are looking for.
I too have sympathy abounding. I am a nurse and have worked with developmentally disabled children both professionally and as a volunteer.
your support base is huge. You need people around you who will be there and help shoulder this weight. Doctors can give you advice for ever but every child is different.
Don't ever stop believing and hoping that things will look up. I am working with too many adult success stories to not believe your boy will be a shining star.
Trying to put together materials with a team that will help folks like you. check on my blog next month (will probably have a new site by then just for parents like you!) for now go to http://moondustwriter.wordpress.com
I have a cousin who is nonverbal and has many of the issues your son has. Perhaps some you haven't mentioned. He is now in his mid-20s and he will never be able to live alone. I keep hoping my aunt and uncle will find him a spot in a good group home, because that would be excellent for him. He acts far better when he's away from his parents.
What really helped him was attending school at Wildwood. You should see if you have anything like that near you. I'm not sure what the laws are in your state, but in NY, your school district is required to pay for the special education needs of the kids who live here. My 4 year old son has Asperger Syndrome, and we don't pay for his OT or PT. We have an IEP meeting tomorrow to see if we can get him into 5 day a week preschool instead of the normal 3 day a week program. If they okay it, we won't have to pay tuition to the preschool anymore, because the district will cover it as special education.
I'd be happy to help you track down a good program in your area and what the special education laws are in your state. Tweet me @CutestKidEver.
Let me begin by saying that my children have aspergers. My oldest was diagnosed with PDD-NOS at 5 and then with aspergers later on. I have never had to deal with a classicaly autistic child but I can give you some of my own incite from over 19 years.
You are doing for him the best that can be done. You have enlisted the help of your school district, therapists and doctors. Once the OT and PT restart I would ask them for recommendations for the house and how you can organize his world better at home. There may be something you missed. Also there are online services that you can use to provide therapy on your own www.rethinkautism.com is an online ABA platform that may give you some advice you need. Is there a support network where you live? Do you belong to any forums? Have you tried twitter yourself or FB for discussion boards?
Your son is nonverbal, but can he spell? If he can spell can he use a computer? There is Carly Friedman who the persons that be found out was quite capable once they put her in front of a computer? Can he type on his own?
Do you have him on meds for his OCD and attention?
I write a blog http://asd2mom.spaces.live.com. I list websites that can be helpful,like MAAP or autism society, etc. Also do you receive social security diability for him or medicaid? I don't know if you are eligible but if you are it can relieve some of the financial burden. Also what about your state? Does your state have any programs for him?Iknow there are many programs here, even though they have had to cut back recently? I was also thinking about your situation at home and how to cope. Will your school district send in a social worker or psychologist with a background in autism to help figure out your home and create a behavioral plan for your son? They create behaviroal plans for school there should be no difference since he is at home, and he is accessing the district by going to school for social once a week. Hope some of these ideas help.
Tammy - as a mother of a child with disabilities and as a Music Therapist who has worked with children with autism for 20 years, my heart breaks for you. The hardest thing about providing for our children with disabilities is the lack of funding for the therapies and programs that could help our children. My state recently made major cuts covering Music Therapy and other therapies that have left thousands of children without services unless they can private pay and parents fearful of what lies ahead. Thankfully there are more and more people blogging and sharing information that we can use with our kids at home. Due to the budget cuts and pleas from parents of children I've worked with, I began a blog giving suggestions of musical activities that parents can use with their children. It doesn't replace therapy, but gives ideas to try. If you feel it may help - be sure to check it out: http://musicforspecialkids.blogspot.com/
Your son is lucky to have such a dedicated mother!
I think what you are doing is a good beginning (probably more like the middle of your beginning). Your beginning was tearing your hair out after too little sleep and too much demand.
I agree that because you know your son you are his best advocate BUT you need an advocate(s) in your arena as well. The advocate that takes your boy off your hands before you lose your hair.
I have been that type of advocate for many friends over the years - just happened to be in the right place at the right time. I grew up with a family member who had CP - life was hard We dealt.
I know you probably aren't there yet but when you are come and join a growing group that I am hoping can get a national voice. I'm looking for moms who can encourage one another through blogging (I am looking to the whole special needs community). I have been in health care and heard the generic answers - there is hope outside of the medical realm. We just need to find a place where we can deliver it.
Hang On my dear!!!
Post a Comment