Someone tell me it does get better........

[mybubbasmom]

You ever have one of those days where it just seems like everything is working against you? I've been having days like that it seems like forever. It was hard when the twins were babies. We had therapy 3-4x a week between the 2 of them. Then they started EC (early childhood program for 3-5yo), and Caleb was diagnosed as autistic, (and then diagnosed as adhd at 5). And it seemed a little harder. James started Kinder, and they started their 2nd year of EC, and it was harder. 2 different schools, 2 different schedules. James was having a hard time in kinder and the twins were having issues with EC, so we decided to home school for a while and see how it went. The tears stopped and things went well for a while. Then it got hard again, cause they only wanted to do stuff on certain days. We stuck it out for almost 2 yrs doing the homeschool thing. They learned to read simple words, and spell their names, first and last. They learned to count, to recognize the alphabet and numbers. We said goodbye to great grandma and they all got to go to be with her at the hospital. We said goodbye to Great aunt (their great great aunt) Rose. And we said goodbye to their great grandpa, the one that they went to see 2-3 x a week and always were close to. It got too hard with everything going on to keep on homeschooling, so we went to the district for placement testing. The twins were at about a kinder level, but since it was the end of the year and they hadnt reached the same level as their peers, they were held back. James was at level with most things (2nd grade) but still was having a horrendous time reading, so he was placed in 1st, and retained since it was the end of the year. The hardest was Gabe, because I had been measuring him against the twins, so I figured he was a little behind, but well within the "normal" range. Yeah right! Testing showed that at 5 he functioned at a 2yo level in most areas, but at a 18mo level in speech. Further testing had him diagnosed as autistic and mr. I guess deep down I always knew that there was something wrong, I just hoped beyond hope that it would be something easily "fixable". Now the twins are in 2nd, James is in 3rd, and Gabe is in 1st. He still functions very much lower than the rest of the kids his age, and is at a pre-k level. The twins have come very far, and I appreciate all the work that went into helping them. But at the same time, I'm so tired of fighting. I want to have normal kids. Kids that dont have speech 3x a week and pt and ot 3 x a week. Kids that can talk and be understood. Without delays or disabilities. And I feel like a horrible parent for wishing that. Like I should be grateful for the kids I have instead of being depressed about it and wishing I could change things. I hear all the comments and smartass remarks about how "spoiled" my boys are and how they just need a couple good spankings and that would fix their problems. I wish it were that easy, that a simple attitude adjustment would take care of it. But it's not that simple. I'm the one that deals with the screaming and meltdowns after school. The one that is up at 2-3-4 in the morning because one or the other cant sleep and cant be left to their own devices in the house. The one who gets asked by the teacher "Why do you keep coming to class and sitting with him?" Well maybe because I've seen how the other 2 boys are in his class. The one was throwing chairs and knocking crap over and growling and yelling. Do you think that maybe that's not a good thing to have my kid around? Nah, of course not, it's perfectly fine, he won't do anything in class anyway. Then again, what do you expect, putting a kid who functions at a pre-k level in with 1st graders? Which is why I said this placement probably wont work, but I'm willing to try it and see if I'm right or wrong. If you've read this far, you're either a saint or really really bored and wondering how it ends. Me too. Sorry to complain, and sorry for this being so long. Can anyone tell me that it gets better? That maybe one day, maybe far in the future, I wont have to fight so much anymore. Tell me that I'm not a horrible mom for wishing my kids were normal...cause I feel like the worst mom ever, like I dont deserve my kids if I feel that way about them.

[icook]

Oct. 8, 2008 at 5:01 PM

I wish so much that you were located in Northern VA... our church has an amazing ministry for children and parents of disabled children called ACCESS that is open to everyone, not just church members. They are now building what we call "Jill's House." It is a respite care center for disabled children where they can receive their therapy, take group classes, and even spend the night once a week to give their parents a break. Our pastor has a severely disabled child and has been spearheading this whole thing. Once we finish Jill's House we will be one of two churches that has anything like it. Since you are so far though, please check out our Access Ministry website. Not sure exactly what they have on there, but it could give you some resources that you may not have where you are. www.mcleanbible.org.

[MyndRayne]

Oct. 8, 2008 at 7:28 PM

don't worry sis, it will get better. it just takes time. i know that you can do it.

[lisarose45]

Oct. 8, 2008 at 11:31 PM

Our Asperger Syndrome children qualify for SSI through Social Security, it will surely help with the cost of things they need but make sure that they start an IEP at School with them, it will qualify them for help from the School System.

[onlycathyo]

Oct. 9, 2008 at 8:41 AM

IT DOES GET BETTER!   And you are doing a fantastic job.  And your kids ARE NORMAL.  AND SO ARE YOU.  You are not horrible.  In fact, You are the best thing that ever happened to those children.  YOu are a fighter, and you are just feeling the need for a breather that I bet you haven't got, and may not get.  But it will come before you reach that end of the rope.  Trust in God.  It will come.  I have felt like you albeit different cricumstances.  With chaotic schedules, and instead of the needs you children have, I was dealing w/ mental health needs of adolescence,  It was so tough.  Gosh, I'll never forget that once, when living in an apt at the air port (having been shipped home on med evac to deal w/ one psycho child, and one baby who needed surgery, plus taking the other toddler along for kicks), my teenager was out of control and just cussing me out.  I didn't know what to do.  I phoned my mother and calmly asked for assistance.  She--the biggest bully I ever met--said "Cathy, I .... (she could hear the yelling)... I can't... I don't know... I am sorry", and hung up.  This was one of many times I had to handle it on my own.  ANd not really, though.  YOu must turn to God and get that strenght.  it's in you, and he is the tap!  I am telling you that my whole life transformed last year after I went to weekend seminar.  Write me if you want more info.  Love, cathy

[momiaya]

Oct. 9, 2008 at 3:28 PM

Well, no.  You have good days and not so good days.  Then you have those superbad days.  I am much like you.  My son doesn't have autism, that I know of but some time of learning disability.  He is getting worse.  I don't want to medicate, but it is looking that way.  I ask my self all the time, why me.  What did I do while I was pregnant with them that caused this.  Then I realize that some body some where has it worst than me.  Try to be thankful the small things.  This is what will keep you going.

[mybubbasmom]

Oct. 9, 2008 at 9:21 PM

My 9yo is on Concerta for his adhd and methylin(also for adhd).  But they say that my 7yo shouldn't be medicated because he's not add/adhd.  He already reacts differently to a lot of meds than he should.  For example when he had surgery, they gave him hydrocodone and said it would make him sleep and relieve the pain.  Yeah right! Not!  He was bouncing soooo bad off the walls within a 1/2 hr of the 1st dose.  Not good!  Most things that should make him sleepy have the opposite effect. 

He is currently on benadryl to help him sleep, ranitidine(for reflux), daytime he gets claratin for allergies.  We tried melatonin, but no real help with that.  It didnt seem to affect him.

Some days are just better than others.

(Original Poster)