Book recommendation?

[Ellajoan]

I have three children, a typical developing 5 yo DD, a 9 yo DD who is mentally impaired b/c of a rare chromosome disorder and who has many ASD characteristics, and an 11 yo DS who is anxious/ADHD.

I am just tired of dealing with 2/3 of my kids who need extra everything. I am tired of having to play the "positive" cheerleader all the time. I am tired of having no support from family or friends, who tend to judge the behaviors of our kids rather than encourage or help us. I am tired of not getting to have the "normal" family experiences without stress and superhuman effort. Most of the time I recognize this is our lot in life and deal with it the best I can, but this week I am just tired.

Can anyone recommend a good book that is aimed at parents of special needs kids? I need some encouragement, but I also don't want to be told how "strong" I need to be all the time. Anyone?

Thanks for listening....

 

[pudge the fish]

I am sure the experts will be along soon to give advice-They know so much

I can just give a and say I am sorry you are dealing with lots of pressure and stress. It kinda stinks when family doesn't get behind you and be supportive-

 

[PrincessMom4]

I know exactly how you feel. I got the "you are being too strict" (because I had rules and consequences). Now that she has been properly diagnosised after almost 5 years of back and forth with various doctors and specialists. I am here for you and I am sending a friendship hug to you (with permission) to support you and your family.
http://www.aspergersyndrome.org/

Could you child with ASD like symptoms have Sensory Processing Disorder (our daughter had many similar symptoms and they were thinking it could be ASD but when they tested she didn't score high enough than they found out about SPD and its like we are living in heaven again-its peaceful here).

 

[Libbyt]

I've been in your shoes, Ellajoan! My dd is 19, has a rare metabolic disorder, developmental disabilities, some mental health issues.......and it is utterly exhausting, mentally and physically. I tell my husband I'm living my life AND hers - I had one of those days yesterday where I just really felt the burden very heavily on my shoulders.

I'm not one who usually reads for support, I do better talking with others. I'd recommend you try to find a support group for parents of kids with special needs in your community. You'll find more comfort there than anywhere else, I guarantee. If you don't know where to start looking, search online for something like a family support network in your state........most states have these and can link you with a support group or even an individual in your community. There is nothing more gratifying than finding another parent who feels your pain, frustration, fears, and exhaustion.......just to know you are not alone and that someone else is there to help you through goes a long way toward giving you hope for tomorrow.

If you can't find a group, email me privately and I'll help you search! I now work for a child services agency, so I do this for lots of parents!

Hang in there, better days will come!
Libby

 

[BeckyScott]

I've found, too, that real-life people are better than books for this sort of thing.

Lacking any good resources in real life, the internet has stepped up quite nicely for me.

I do know a couple of other moms locally. They aren't in the exact same circumstances, but they are here, and if I have a question or just need to yap, I know where to find them.

Message boards and yahoo groups, for me that's the solution.

 

[1stluvispooh]

First just a

I know exactly how you feel! Especially about the no family help. I have to say things have gotten better in the past couple of years but still don't feel like I get the support from family particularly my in - laws even compared to the support they give their other children. DH and I plug along. Yesterday after DH took DS camping and to a rocket launch for the weekend I had a poor me moment. I think everyone needs a chance to have some time to feel the feelings they are feeling without guilt. If that means you lay on the couch and cry ( my personal favorite) go ahead.

 

[SteveMouse]

See Finding Magic Mountain, available at Amazon, Borders, etc.

Carol (Zapata-Whelan) tells her story of living with the extremely rare genetic disorder Fibrodysplasia Ossificans Progressiva (FOP), which turns muscle to bone. Carol a recovering worrier, writes on leaning on faith, leads us through the ups and downs of accepting and combating suffering- sharing discovery, hope, and courage throughout.


-Steve
One of some 2500 or so (statistically) and one of 600 people WORLDWIDE identified as having FOP. See www.ifopa.org for additional information.

-steve

 

[Libbyt]

Steve, I'm going to look for that book - it looks great! And I want to read more about FOP also; we've just gotten into this whole world of rare disorders, as our daughter wasn't diagnosed until age 18! At this time, it is unknown how many people share the type (right now we think Type 4) of 3-methylglutaconic aciduria (3MGA) she has, but her doctor feels there's a chance she may be of another type that only has 25 or so people identified. Learning about rare disorders really makes you see how truly individual and remarkable we all are.

Hugs to you!
Libby

 

[bookwormde]

The thing I have found to be the most helpful is the better I understand the neurovaritions my child has the “easier” it gets for both him and the rest of the family.

Finding a support group, with the description of your children an Aspergers group might be a good starting place, where you can often find a few members with similar specifics to your children. You would be amazed how many “tricks of the trade” you can pick up not to mention lots of emotional support.

If you have not read Tony Atwood’s The complete guide to Aspergers I would recommend that since it covers many ASD characteristics even if your child would not formally meet the diagnostic criteria, and has a lot of references in the back. It is available on Amazon for about $25.

bookwormde

 

[LuvsTinker]

(((Hugs))) Know that you're not alone in the way you feel.

 

[lucigo]

I have a book in my bathroom, because sadly thats the only place I can look at it these days LOL But thought you might like it....Its called "Cup of Comfort for Parents of Children with Autism: Stories of Hope and Everyday Success"

http://www.amazon.com/Cup-Comfort-Parents-Children-Autism/dp/1593376839

 

[LMC]

I can relate! I have DS14 who has a rare genetic condition, ADD, anxiety, MR, and a host of comorbid issues with his syndrome, DD10 who is typical (it's a wonder) and DS8 who was diagnosed as "severely" ADHD. It' surprising I haven't flipped yet. DMIL calls yesterday to tell me how rewarding it was to work with a new special needs child in Sunday School at church this week. Well that's all well and good but stop trying to compare that Aspergers child with my ADHD kid who the specialist has already assured me he has no other issues and if it is so rewarding, you can come visit anytime and help! I just had to giggle inside that if she were in the trenches everyday, I don't think she would have that rewarded feeling. I just really can't take it anymore when she calls to tell me what see saw or learned about this or that kid and I'll just have to tell her to save it for someone else in the future. I'm on overload with my own three and fulltime college courses this summer and looking for a decent paying job so my kids can have a Christmas that I can't take anymore stress. Maybe I need some medication!!!