OT: 'The Explosive Child' - experiences?

[DutchsMommy]

Hello,

Some may remember a while back I was asking about websites/resources on Aspergers.
I have since had a few opportunities to speak to my friend and get a little more info. They are having some difficulty with a diagnosis for their son. Basically he fits about 60% of the symptoms of Aspergers, but doesn't on others. From what I understand it is a difficult diagnosis on the Autism spectrum in general and she is concerned because Aspergers seems to be the 'flavour of the month' much like ADHD a few years ago. She has had some specialists recommend medicating, but is reluctant without a firm diagnosis. I feel helpless because when we get together for our girls-weekends I can't seem to come up with anything to say to help her (not that I can take away the reality, but something other than 'man that sucks' would be nice!). Anyway, her marriage is also suffering as her husband seems to be in denial - thinks if he can just 'get through' to their DS he can make him 'normal'. I think this is hard on my friend because she has made it past the denial and now is on the hunt for the 'cure' and sees DHs methods as unhelpful and uninformed. She is also concerned because they have a younger DD who is a 'great' baby/child ie always sunny disposition, quiet, well mannered etc and her DH basically ignores DD. He makes a huge fuss over DS in hopes of 'snapping him out of it' and leaves DD wanting. (DS is 5 and DD is 3). My friend is also scared because she is beginning to feel like she could really hurt DS when he is having an episode. Fore example, he smashed her in the face with his plate when he didn't want to eat something - enough for her to see stars, and she just wanted to shake him. to make matters worse, her first born died at a sitters just before his first birthday - there was a trial with the sitter - she claimed he fell down the stairs, but there was retinal hemmoraging which is condusive to shaking - so needless to say she is petrified she is becoming some sort of monster.

Anyway, long story short, she has all kinds of help from the community ie psychiatrists, psychologists, respite care etc etc etc. But....I wish there was some untapped resource I could offer, or just become a but more useful a friend to her and am looking for any suggestions to help. It hurts me to see my friend go through more than I think any person should be asked to take on and all I can talk about is how my DS won't stop burping and tooting - it seems to trivial. Anyway, I appreciate the ear and any advice would be greatly appreciated!!! Thanks

 

[tacomaranch]

Wow, I think your friend sounds like she is having a day like mine. We were going down the road in our new minivan and suddenly I was hit in the back of the head with a raspberry shake that also went all over the entire van.

I was about in tears. What could have someone said to me? Can I take your son for a few minutes so you can relax. Just 15 minutes would have helped.

Yes, the DH was in strong denial. They see a problem and they just want to fix it. It is in there nature. DH was also just ignoring DS and pretenting he didn't exsist. Time has finally brought him around to the fact that we have a problem, a big problem. DH also took shelter in work. He started to stay later or even not come home. It seemed like DS was all my fault.

So what to do? Be a good friend, listen. You said she has respite which I would kill for! I have a friend who's son has William's Syndrome and she is the only one I can talk to because she truly understands. All she needs to do to make me feel better is listen, tell me a something she experienced and we laugh, cry and try to get thru another day.

Her favorite saying when I ask how it is going..."nothing a bottle of jack and straight end razor blade won't fix" The dark humor of special needs.

Good luck!

 

[disneygal66]

I can totally relate to this! My DH is still in some denial about our Autistic son (6 yrs old). He works alot and the kids are my responsibility. We also have a 10 yr. w/ADHD, Anxiety and Non verbal learning disorder. NVLD is very similar to Aspergers!! It is so hard for people who don't have special needs kids to understand. You seem like a great friend!! I hope that you can continue to listen and just be there for her. Sometimes a shoulder to cry on or a smile is all we need! I hope things get better for your friend!! I will add her to my prayers!

 

[roseprincess]

To the OP, I do remember a few months back you posted about your friend.
It is very difficult to be parents of a special needs child.
Dh and I are parents to 2 special needs children!! I have special needs boy/girl twins! My ds is high functioning autism/ aspergers. DD has a complex congenital heart defect and cognitive delays. At this point, I have more problems with my dd than my ds. My dd hits me, screams, has lots of tantrums. She is extremely strong- willed. I have to give her time-outs all the time at home. Dd is also very disrespectful to me at home. She is a little angel at school and listens to authority at school. Ds has his moments as well at home, but they are not bad. Both my kids are on Ritalin. I have them on the short-acting generic Ritalin because the long-acting brand name is too expensive for our budget, even with the health insurance prescription coverage. I am the main caregiver at home during the day(SAHM). Dh helps ALOT at night and weekends.
Dh and I are very supportive of each other. I am vey blessed with a great husband! The only other support I have is at church, with a special friends volunteer during children's church and my kid's school is helpful, too. Both my kids are mainstreamed in a regular classroom, they are in 3rd grade. I don't have a respite care helper, I wish I did tho. In my area where I live, there are alot of special needs kids in our school dist. and alot of repsite care workers are few and far between. I applied twice for a respite care worker in the past 9 yrs, never got anywhere with the respite agencies .
I figure the respite agencies thought I was doing a pretty good job raising my kids without their help?
My parents and family and dh's parents and family are really no help. They don't understand what we are going thru. My parents babysit my kids once in a great while, but that's about it. Dh and I get a date night maybe once every 3 months.

Advice for your friend: maybe she should take the advice of the doctors
about getting her ds on medication. Even if it is just one med, that will help your son calm down and focus. Kids with autism/aspergers also can be diagnosed with ADD or ADHD, that correlates with the aspergers. I don't know if your friend has her ds on some kind of multivitamin or diet(GFCF diet).
Also, it would help if her dh could be on the same page with his wife in dealing with ds. That would make a world of difference for their marriage.
Is your friend in an autism support group for parents of autistic children? Maybe you can accompany your friend and her dh to an autism support group, as a one time basis, and hopefully they can go on their own without your help. Your friend and her dh needs to find a community of other parents that are going thru the same thing as them(a support group). Going physically to a support group, not just an on-line group on the web.
Since your friend has a lot of outside help and a respite worker, the respite worker can babysit and her and dh could physically go to an autism support group meeting once a month or every other week. There is nothing wrong with an on-line support group, but being at a meeting physically with other parents that are going thru the same thing will be very beneficial to both of them!!

Your friend is VERY fortunate to have a lot of outside support(respite worker,etc) and a friend like you!

Keep us posted how things are going for your friend, her dh ,and ds.


Rosemarie

 

[XYSRUS]

You are a true friend to care so much. Like others have suggested, encourage your friend to go to a local autism support group. Don't be afraid to talk about your kids stuff. I think it might make her more weirded out b/c she thinks you have to walk on eggshells around her. Respite care for her and the rest of the family is great. As far as getting the husband on board, have DH spend a week with the child (like on a vacation,uninterupted). That is how finally my husband saw our boy was acting differently and had some truely classic autistic behavior. Just keep being her friend! So many have been lost along the way . And, don't exclude the child from activities you would accept a typical child in. Good luck to you and your friend.

 

[JenJen]

My DS was first considered to have Aspergers then the diagnoses was changed to PDD-NOS because he was more social then those with aspergers. Although he did have some problems socializing he still wanted to socialize and made some friends as he got older (he is now 14)

Pervasive development disorder not otherwise specified (PDDNOS): This category is used to refer to children who have significant problems with communication and play, and some difficulty interacting with others, but are too social to be considered autistic.

 

[DutchsMommy]

Thanks everyone for your support. Next time I talk to her I am going to ask whether she has considered a support group. I think that is a great idea - at least to have others who can relate and understand.

Roseprincess - yes, she does have him on vitamins and a special diet....I think she wants to try everything possible before medicating. I think she will also be better able to accept medicating once she feels she has done all she can as far as a diagnosis is concerned. I think she accepts the fact that there may never be a 100% diagnosis. She is also finding it difficult because her DS is only 5 and it is really difficult to determine what he 'really means' if that makes any sense - I can't tell what is going on in my own DSs head and can imagine it would be difficult to try and make a determination if there is an issue when the child doesn't have the life-experience to be able to tell you what is wrong.

I appreciate the suggestions and prayers.

 

[tw1nsmom]

I can totally relate to this! My DH is still in some denial about our Autistic son (6 yrs old). He works alot and the kids are my responsibility. We also have a 10 yr. w/ADHD, Anxiety and Non verbal learning disorder. NVLD is very similar to Aspergers!! It is so hard for people who don't have special needs kids to understand. You seem like a great friend!! I hope that you can continue to listen and just be there for her. Sometimes a shoulder to cry on or a smile is all we need! I hope things get better for your friend!! I will add her to my prayers!

I apologize, but I can't remember if we've chatted. I just wanted to let you know that DS6 has also been diagnosed with NLD. It's nice to talk to other parents who have been through or are going through similar experiences.

 

[jaaron]

My DS was diagnosed with Asperger's Syndrome when he was 5. He is now 10 and doing very well. I know it can be VERY frustrating, especially making decisions on medication and education. As far as diagnosis, I can't understand why a child with 60% of the characteristics of AS wouldn't be diagnosed as AS, unless most of those symptoms could indicate another diagnosis. I would advise your friend not to give up and keep trying to determine the problem.

I would also like to give a few words of encouragement. Before my DS was diagnosed, I felt like I was hitting my head against a brick wall. His preschool teacher told me she thought I should delay starting Kindergarten because he seemed too immature. He also had a stemming behavior of waving a bent flexible straw in the air, which the teacher thought he couldn't control. There have been many other incidents, but I eventually took him to a neuropsychologist for testing and got a diagnosis. Since that time, I have read everything I can find on AS. We have also discovered that my DD and DB have AS, and both are very successful. My DD has a Masters in Mechanical Engineering.

As far as DHs who are in denial, I think it helps for them to look at some of the people throughout history who would probably have been diagnosed with AS. For example, Ben Franklin, Thomas Jefferson, Sir Issac Newton, Albert Einstein...the list goes on. I try to look at AS in a positive light. Some people even say that Bill Gates exhibits many of the characteristics, and that those with AS can be very successful because they get so wrapped up in their area of interest.

I hope all of those struggling with their childrens' disabilities are able to get the support and help they deserve! (And that 15 minute break mentioned.) They are all in my prayers!

 

[katlas&kids]

I just wanted to let you know to hang in there and just be there for her. Sometimes it is the best thing.

My DH is Bi-polar with a lsit of medical problems longer than my arm. He was diagnosed in his mid-30's. I was expecting our first child at at that time. When DS was 3 1/2, our world changed. He became explosive, had tantrums, screaming fits and things really got weird. He had problems in preschool and they had him in a 4k class at 5 cause he just didn't "get it". No one wolud test him, not even the public schools. He sat out a year in 1st grade while they did their thing. I had him tested outside and they went with bp due to family history. It took almsot 3 years for him to get stable and for us to get more of a diagnoses. He is now ADHD, bi-polar and has a learning disability. He is in a emotional disturbed self contained class, but his teacher has seen much improvement this year. They told us DD- 3 years behind him, could still get/become BP and to "ease her into puberty". ACK! She was diagnosed as ADD in Feb. due to repeating K and still not catching on.

Without some good friends, online and real life, I would be nuts too. Ok so I am a bit at times! But through prayer, humor and having someone to lean on, talk to and just be there with a hug has been so great! But having a son with brittle bone disease, the 2 younger kids and then hubby... that can make any one a bit nuts!

Anyway, there is a book out there called the explosive child, which may help. I am not sure of the author, sorry, but it is listed on the bpkids.org site, I believe.

I just want to thank you for your friend, for being there and being that one special friend in her life! And yes, I am going to try Disney this year, with the 2 kids and maybe solo, for our 1st trip!