Nephew just diagnosed with autism

[Stitch1404]

I posted awhile ago that my nephew was being tested and it was suspected that he had sensory integration disorder. All the testing has been completed and he has been diagnosed with autism. He is 5 years old. The doctor said he could keep getting worse until he is 6 and then he will level off. He is at my house playing with my 6 year old daughter at least 3 times a week and this has really just been very hard for his parents to accept. Any tips or advice from those with experience would be greatly, greatly appreciated. I know this little guy can do great with the help that he needs, he's an amazing kid.

 

[tacomaranch]

Wow, what a day for you. How nice that he playing with your daughter. Being around neurotypical children helps as they model how to behave, speech patterns, etc. Our DS did great in his "normal" preschool where he was the only kid with autism.

There are so many schools of thought on what works. Diet, ABA, Teech, Son-rise, vitamins, etc. I think it is when I break a horse. I take a bit of everything I know and then see what the horse does best with. Each day it might be something different, but I keep my basket loaded so I have something that will work.

I think someone has broken down the steps to grief. Denial, deal making, acceptance, ...I don't really know the exact process but it is the same thing as a death.

We say goodbye to the expectations we had and the child we dreamed of and then at some point we accept and love the child we have. But it is a loss regardless. This is JMO. I don't know what it is like for others.

I hope this has helped and feel free to PM me if I can help. Unfortunately, I am also only 7 months into this myself.

 

[Ali]

Did the doctor say why it will level off at age 6? I have never heard of that concept and my son is 5 and his friends with PDD etc are all approaching 6 and if they are at the level now they will stay all their lives we are all in a world of hurt! IS there some weird developmental mechanism that somehow kicks in? Does it mean that any therapies after age 6 will have no effect on changing behavior for the better?

Help!!!!!!!!

Alicia

 

[3kidsmommy]

I, too, have never heard that...my son is 8, has autism, and is definatley different than when he was 6. At 6, he functioned on a 2-3 year old level. At 8, he is finally functioning on a 4 year old level! He is better able to control his stimming, sensory integration issues, and to model appropriate behavior. He is still autistic and always will be. To the OP--please know that your nephew is in my thoughts and prayers. My son was diagnosed at the age of 4 and even 4 years into this, I am still learning new things. We have tried countless approaches to therapy, and really the best thing for my son has been traditional OT, SLP, and Special Education services. Each child is different though. I should add that the whole team also teaches social skills and he is in a social skills group as well...

 

[cathicool]

Get him to a DAN! doctor ASAP. We began an alternative treatment for my PDD/ASD son a year ago and oh boy! what a difference a year makes! he is so close to "normal" now it is truly amazing. Still has some "stims" but the progress he has made is fantastic. My son is now 4 and greatly interactive. He is in an integrated full day preschooland getting OT, PT, speech and play therapies. He takes (swallows) about 15 different vitamins and supplements a day and has had a total diet change. We did a lot of allergy testing on him and found a LOT of allergies. He no longer suffers from eczema and is potty trained now. He still fatigues easily and his speech is difficult to understand sometimes. But in my heart of hearts, I believe that finding a DAN! doctor and following their protocol saved his life. It is alternative/holistic medicine, but conventional medicine didn't have any "answers"--- and I'm a physician assistant! It's expensive and you may have to pay out of pocket, but it is soooo worth it.

do a google search for DAN! autism to get more info

JMHO...............
cathicool

 

[Mickey'snewestfan]

Did the doctor say why it will level off at age 6? I have never heard of that concept and my son is 5 and his friends with PDD etc are all approaching 6 and if they are at the level now they will stay all their lives we are all in a world of hurt! IS there some weird developmental mechanism that somehow kicks in? Does it mean that any therapies after age 6 will have no effect on changing behavior for the better?

Help!!!!!!!!

Alicia

As a special ed teacher who has worked with many children over the age of six I can tell you that I have worked with many children with ASD who have grown and made wonderful changes after the age of six. I also have a little neighbor with HFA who is 8 and changing every day.

I read the comment above -- that he might continue to get worse until age 6 and then he would stabilize? That doesn't really fit with my experiences either, though. In my experience every child is different in the trajectory they take but every child can definitely grown and change at every age.

 

[Stitch1404]

Maybe my sister needs to get a new doctor or maybe she got confused. I'll call her tomorrow about the whole leveling out at age 6 thing. I am guessing she just got confused. She was a nervous bawling wreck when she called me having just been told her precious little one had a disorder that is going to change both his and her life forever.

tacomaranch...thanks for the offer to pm you. It is always good to know that there are other people out there going through the same things and that they might be able to help. My sister and I are about as close as siblings can be and I feel like this is happening to my own child. It is really hard to grasp this.

3kidsmommy...thanks for your kind words. My sister needs lots of prayers and pixie dust.

cathicool...I'll definitely be googling that tonight and passing the info along to my sister. Thanks for the tip. My nephew's father is not a part of his life so I feel like I need to step up and help my sister with researching this disability and finding something to help Caleb. I know she can't figure this out on her own and I wouldn't want her to. Any tips and suggestions are greatly appreciated!

 

[minkydog]

The best thing you can do for your sister is love your nephew unconditionally. Show her you're on her side by supporting her, even if you disagree with her decisions. It's a huge blow to find out your child has autism and the grief experience is often a winding, unpredictable path. It takes a while to process it (years). Encourage her to look at all the therapies, not just the traditional ones(they have their place too). Some therapy will work, others not so much. That's the thing about autism--it's not a one-size-fits-all kinda condition. And NEVER take a doctor's dire prediction as the Gospel truth--they don't have a crystal ball.

When we found out Christian was autistic( and MR and low vision, etc. ) we had not even one word of encouragement from the doctors. Not one. All we were told is how he'll never this and failure that. Prepare...Institutional care... It took me about 2 days to realize that none of these doctors actually had children with autism. They hadn't lived with it. They didn't know how driven I could be to help my son. Heck, they didn't give him a chance to show how determined HE could be

Christian falls on the low-functioning end of the spectrum, due to his massive brain damage. However, with therapies of all kinds he has learned to do a lot of things. He's pleasant & loving, a fact that anyone who knows him would attest. He does things we never thought he'd do and just about the time we think he's plateau'd--there he goes again

Autism is not a death sentence but it does mean your sister's life has changed forever today. Respect what she's going through and understand that she will never be "over it", but she will survive for her son's sake.

Cathy--mom to Christian the Amazing Wonder Boy,11

 

[disneyelaine]

Hi! I have a 9 yr old boy and a sister who is great at listening when I am down. She helps put my mind at ease and sees wonderful things in my son, that I may miss because I am so wrapped up in his day to day life and all his therapies and sometimes I get discouraged. I guess what I am trying to say, is you can help by lending a understanding ear & be a cheerleader when mom is down. Keep having your nephew over at your house as much as possible, because when the parents need a break, at least your nephew will be comfortable in your home. My son is very comfortable at my sister's, but besides our home, that is the only other place he is loved unconditionally. You sound like you are a wonderful sister already!

I had never heard of the leveling off at age 6 either. We got our diagnoisis in Cincinnati as well. By chance do they go to the Kelly O Leary Center at Children's Cincinnati? I don't think they would say that there. They have classes and seminars for parents new to the world of autism. We do not live in Cincinnati, but I know of some great resources there. I would say the biggest challenge off the bat will be school and getting an IEP in place if they do not have one yet. Make sure he gets speech, OT, special reading help if needed, even an aide in the classroom....if these apply, which they do for most autistic kids.

Cincinnati also has a school called The Trinity School. It is private. I have heard good things and visited once. It may or may not be worth checking into. Most kids attend regular public school in a normal classroom and that may be best for your nephew. Just throwing some things out there, and sorry if I am getting too far out of the way.

I attended a week long seminar in Cincinnati last week. I am just getting to the point now, 5 yrs after diagnoises, of learning and reaching out. Try to understand your sister may be in a "shell" for a bit over all this. I was. It is hard I know. Hugs.

 

[mlwear]

I think these first few days will be burned into your sis's memory forever. I know that is the case for me. It was extremely difficult to even believe this was really happening. I felt very sad for quite a while. I tried as hard as I could but would often end up in tears in public. At the same time, parents/caregivers must go into immediate action mode. Early intervention is key. There is plenty of debate as to whether that is ABA, DAN, TEACCH, chealtion, osteopaths, you name it (another thing to sort out), but I have never heard anyone say that early intervention is not the most important thing. While you sister is grieving, she imay feel that she is expected to become an autism expert and special education attorney. It's hard. It takes it's toll.
IMO, if your sister hasn't already she needs to contact the public school system (assuming she will use public schools). If the nephew is not in K yet, she shouldn't think that she has to wait until fall to call. The sooner she can start the whole sp. ed. process the better. It takes a while to get through all the meetings and evals. before an IEP (Individulaized Education Plan) can be implemented.
Next, from my experience, the most relief I felt during those first few months was when I realized that there were people that would help me and I let myself accept their help. This goes beyond relatives. Your state and/or county may have programs and there are non-profit organizations, as well. (Feel free to PM me, if you want some help finding them.)
As a pp wrote, truly what your sis is grieving for is the expectations and dreams SHE had for her son. This is still hard. I would never say it isn't. But, her son is the same today as he was yesterday and the day before and the day before...his life likely won't be like she thought/hoped. Her life won't be like she anticipated either. However, I think moms of special needs kids come to be some of the strongest women in this world. When she realizes that she is mourning (and IMO it is mourning) a dream and not her child, things will get better. This took a long time for me, personally.
Now, my son is 8. He was officially dx'd 4 years ago. My whole outlook on life has changed. I completely accept that he is autistic. I think the world that neurotypicals live in and expect him to live in and conform to is very difficult but he has great gifts that are unlocking with time. He experiences the world differently. I have been fortunate to communicate with quite a few autistic adults (some HFA, some Aspergers). The vast majority embrace their disability despite the challanges. Plus, I have been so incredibly impressed by how fantastic these folks are: smart, talented, creative (yes, creative). I want to give my son the tools to make his life less challanging, but I completely accept that he has autism. Now, I know it really is OK. It's a tough life for our whole family, but there is a purpose for everything.
Give your sister a big hug. I will pray for her. She is hurting now, but she will be stronger later.
One last thing (yes, I must add to this long post)
I think a great book for parents just learning of a dx is Children with Autism: A Parent's Guide, Edited by Michael Powers with a foreward by Temple Grandin. A lot of good info. to get started, but the best part is that each section has a few pages of comments from parents. The comments are often very diverse, but it made me feel like someone else knew what I was going through.

Oh, my son's neuropsychologist talked about the age 6 thing to us a couple of years ago. Sorry I don't remember the details, but it certainly doesn't mean that the child won't progress. My understanding is that typically there isn't going to be a jump down from high to moderate functioning, moderate to low. Typically, there won't be NEW autistic characteristics that develop, that sort of thing. Of course, this isn't 100% true. Plus, other factors could cause for a less desired change. It has nothing to do with the child being able to make progress. I guess, my interpretation now, NOT that words of DS's doc, is that at age 6 one can determine about "as bad" as it is going to get, uphill from there. I don't know if I completely agree with this though, but maybe the majority of cases

 

[BlondeAlligator]

From an emotional standpoint a book that helped me a lot when my DD was diagnosed this spring was "10 Things Every Autistic Child Wants You to Know". It really explains the disorder from the kid's points of view & has helped my family undeerstand what we are dealing with as well.

Good luck!

 

[karynnix]

Patience, patience, patience...it is so easy to fly off the handle with an autistic child. I don't know about the 6 year old thing, but my son has had many ups and downs. He will "get better" for a while and then go into a tailspin. I just never can predict when the tailspin will come! Jack will be 8 next month, and he is going through a wonderful time right now. Last year was a nightmare, but he seems to be maturing some now. It really has everything to do with how patient people are with him. I personally find him fascinating and I could watch him all day long! Look at this as a learning experience and not something that is devastating.

 

[tacomaranch]

mlwear, that was a great letter. When I went back to read this I started to remember how hard it all was and still is. When we were at job services with our team today trying to find help when they leave, I realized that I have only been on the waiver for 2 months! Our DS was only Dx'd in writing on December 21st. We are only 6 months into this! It truly changes everything about you at a core, I am stronger, confident and have knowledge.

Good luck to all as we walk down the path.

 

[disneygal66]

I too have an autistic son 6 and he is doing well. I know the horror of the diagnosis is weighing on your sister. I am a nervous wreck that my DS will be in a "normal" Kdg class this fall. Austism can ve very challenging. My advice would be to find a terrific therapist and support team. Our therapist is great and so much help. Also, if you can, take your nephew for a few hours or an evening sometimes. The one thing that we don't have is any one to watch our kids (DS10 is ADHD and NVLD) so that we can just get out for a while. I think you are a terrifc sister and wish my sister was as supportive as you. If I can help with any thing at all, please PM me.

Your family is in my heart and prayers!!

 

[SueM in MN]

This is a good website for all sorts of disabilities and especially for school related resources:
www.pacer.org

The PACER Center is based in Minnesota, but it is a national clearinghouse for information on educational rights.

Right now, her world is totally upside down. I know mine was when my youngest DD was diagnosed with cerebral palsy and multiple disabilities.

She will be in mourning for a while for all the wishes, hopes and plans she had for her child. Her family needs to get used to the new future, not the one they had thought they would have. After a while, they will come to realize that the child they loved before they found out about this diagnosis is still there and they will come to grips with their new reality.

I also remember reading this same thing:

Oh, my son's neuropsychologist talked about the age 6 thing to us a couple of years ago. Sorry I don't remember the details, but it certainly doesn't mean that the child won't progress. My understanding is that typically there isn't going to be a jump down from high to moderate functioning, moderate to low. Typically, there won't be NEW autistic characteristics that develop, that sort of thing. Of course, this isn't 100% true. Plus, other factors could cause for a less desired change. It has nothing to do with the child being able to make progress. I guess, my interpretation now, NOT that words of DS's doc, is that at age 6 one can determine about "as bad" as it is going to get, uphill from there. I don't know if I completely agree with this though, but maybe the majority of cases.

The Center for the Study of Autism is another site with a lot of good links. Temple Grandin (who was already mentioned) is an amazing person with autism.

Sending lots of pixie dust

 

[itsagloomyday]

Stitch1404, please remind your sister that while her child now has a diagnosis, he is the same child he was the day before he was diagnosed. The diagnosis is more of an explanation for why he is doing the things he is doing. It does not define her child. Every child with autism/PDD is different. My 10 1/2 year old son continues to make progress.

I agree with the poster that recommended the Kelly O'Leary Center at Cincinnati Children's. They are a great resource. They are sponsoring a conference on Autism Spectrum Disorders Friday October 20 and Saturday, October 21. For more information you can call 513-636-6732. Please PM me for any additional information or my home phone to talk with me.
Debbie from Cincinnati