No one could have ever prepared me for. .

[Mom28GreatKids]

Ok, I have only been aware that I have a special needs child for about 5 months. I have 7 NT children who are all high iq, hard charging, high achievers. And now I have #8, who is still a high iq, hard charger, but is a non- NT kiddo. No one could have ever prepared me for what a roller coaster this would be.

 

I told our SLP that when we walked into the clinic in September, this wasn't supposed to be this hard. He would get some ST, learn to speak, and that would be that. Ha. How naïve I was.

 

Just today I was sorrowing as I watched little guy hide under the table in Sunday School because he was not able to sing with the other children. Then this afternoon I was rejoicing when I asked him a question and he replied "yah mom." First time ever!!!

 

So, what could no one ever have prepared you for this wonderful, terrible journey of grace and love?

 

Sent from my XT1049 using Tapatalk

[Lecka]

How much my children love each other.

 

How many "symptoms" we find endearing.

 

How much of a difference appropriate supports can make.

 

How much teachers and therapists can like and be personally invested with their special kids.

[Lecka]

I think I am a nicer person, too, in some ways.

Edited February 1, 2016 by Lecka

[Mom28GreatKids]

Well Lecka, the nicer person thing. . .I think I get that. I at least think I have much more empathy. Much much more.

 

Sent from my XT1049 using Tapatalk

[Tiramisu]

I think I am a nicer person, too, in some ways.

 

Yes, definitely true for me. I would have been so full of myself, criticizing other people's parenting, etc.

 

I would have never recognized my own quirks and continually blamed all misunderstandings on the other party.

 

I may have never been so much in need of help and support. So I may have never learned to reach out to comfort and help others or felt the intimacy of shared suffering. I may have stayed in my own bubble of selfishness forever.

 

I may also not have developed such close relationships with my children if they were so perfect that I didn't have to really work on it.

 

But I'd probably have a nice income, be getting manicures and pedicures and not doing my hair myself, following the latest diet craze, lying in the sun by day and drinking margaritas at night in the balmy breeze of a tropical getaway. Not quite true, more likely I'd have weekend binges reading about connective tissue diseases, reading every Indian novel in English ever written, playing sudoku or whatever my special interest of the year would be. Haha.

 

 

Edited February 1, 2016 by Tiramisu

[FairProspects]

I'm a far better teacher for the experience. I remember a special ed prof in grad school talking about how generally any accommodations we would see on IEPs or 504s would be beneficial for the learning of *all* students and I just didn't believe it. Having so much experience with accommodations now I see just how true that statement was. All classrooms would benefit tremendously from being dyslexia/dysgraphia/dyscalculia (or insert whatever dys here) friendly and inclusive. It would really only serve to increase the learning for all students - particularly those who are borderline, stealth, or otherwise undiagnosed.

Edited February 1, 2016 by FairProspects

[PeterPan]

 

But I'd probably have a nice income, be getting manicures and pedicures and not doing my hair myself, following the latest diet craze, lying in the sun by day and drinking margaritas at night in the balmy breeze of a tropical getaway. Not quite true, more likely I'd have weekend binges reading about connective tissue diseases, reading every Indian novel in English ever written, playing sudoku or whatever my special interest of the year would be. Haha.

Oh dude, we could talk about the might have beens...  With the $$$$$$$$$$  (yes, that many) that we have spent on his ST, wow, we could have traveled Europe AND Australia AND the Far East.  That would have been a trip.  Actually, I don't know what that would cost, but yeah we could have done a lot.  Finished things on the house.  Braces for dd.  I wouldn't have gained weight with all the driving and eating out.  (This year mercifully I'm not, btw!  I eat a Wendy's baked potato and then I come home and exercise at the Y.  So far that's working for me.)

 

I know I'm not a nicer person now.  Something has sorta snapped in my brain by seeing too much.  It's like on the one hand you get it, and on the other hand it's OVERWHELMING to get it.  Nothing is simple anymore.  I find myself wanting to do simple things like go live in an airstream and crochet and eat fish we fished from a creek.  I even picked out the Airstream.  I didn't realize they still make them!  They're really snazzy now, with low formaldehyde materials and the whole nine yards.  Probably not as low as I'd like, btw, but still it would be fun.  A girl can dream.  

 

FP's observation about being a better teacher is interesting.  I think it has eliminated, for me, that thought that education was top down and really made it come to the relationship and the engagement.  I still held vestiges of that with dd and now it's gone with ds.

 

I guess the reason I can't actually reply in this thread as an actual reply is because I can't agree with the thesis.  I actually feel just the opposite, that I WAS prepared.  And that, to me, is the most astonishing thing.  When I look around me and realize the circle of friends I have, who have dealt with this things, who took the time to mentor me and teach me and explain things to me... When I realize that things I found compelling and thus studied YEARS ago now all FIT TOGETHER to make the person I am today, the person who CAN give him the things he needs...  That BLOWS MY MIND.  

 

It let's me know that this is NOT mysterious and random, that it is as it was meant to be, that we are provided for, prepared, and doing exactly what we should be doing.  

 

But yeah, I wish I were getting more gentle like Lecka and more self-aware like Misu, etc.  Instead, I'm just crotchety and tired, lol.  But prepared, I do think I was prepared.  That part I'm not worried about.  Everything we need, we have.  That's what I pray for my kids too, especially my ds, that he would have what he NEEDS, not just what I *think* he needs.  There can be such a big difference.  

[kbutton]

The toddler years. They were awful! And the isolation when my son was little--people were very unfriendly and had a little slot to stick me in. We had unidentified SN at the time (and for several years afterward), but the role assigned to me by those around me when my son was little was terrible. It was terrible even when I didn't know we had SN. If SN had been identified, I am certain I would have been in a mental institution from the isolation and rejection.

[PeterPan]

Kbutton, you mean NOT identified would have left you needing padded walls?  Yeah.  I think that's part of the hard thing of being early in this.  A lot has changed just in the last few years, I think, with FB and people putting videos on there.  Now people see my ds, who you know can be pretty hair raising, and they're just very patient.  You say he has ASD, and they just really cut you a lot of slack.  Now when he's 10 will they?  Dunno.  But right now they do.  Do you think it's also an issue of changing expectations as they age?  That would be rough.  As you know, I've bottled my ds and laminated him; he's never getting older.  :D

 

And on the rejection, for us it's more like avoidance.  I don't think they look at us and go it's our FAULT, but they KNOW us.  If you were new to the area and people didn't know you and your dc is really challenging, yeah I can see where people would have concluded things about you.  But I'll bet when you're where people KNOW you and know you're hard-working, diligent, attentive to needs and behavior, that what's going on is NOT because you haven't tried and that you're doing the best you can.  

 

I hadn't really thought about later.  I think about things like whether it's ethical for him to marry and pass on his genes, whether he can be a kind, attentive, stable husband.  I think about things like that, because of course few people want to be alone in life.  But as far as social criticism, we seem to be surrounded by people who are the opposite.  But apparently I have a terrible propensity not to give a RIP about people who would think the opposite.  ;)

[kbutton]

Kbutton, you mean NOT identified would have left you needing padded walls?  

 

Yes and no. Identification helped us know I wasn't crazy. Identification early on though would have brought even more rejection--no one would have wanted to have to deal with having a friend who had a SN kid, and it would have brought a lot of criticism because the diagnosis would have been questioned over and over. I would have been "that mom" as well. He was often better for others (on the surface) because they would see him in a new, stimulating environment (which brought out his curiosity and giftedness). I had people tell me all kinds of ugly stuff. I mean, really, my mom tried to understand things, but she hadn't seen it all firsthand until he was 2. Then, he got up one day while visiting at her house, and did his usual at-home behavior. She had gotten up early with him and let me sleep. I don't think I had the sleepy sand out of my eyes before she was apologizing profusely for not believing me!

 

Ironically, there are other kids like this in that church, but they were in families who were more accepted into that environment from the get go. They had connections as church staff, or they had been known for a long time or had older kids that they "managed well" first. The other kids were also diagnosed (or got intervention) after we left that environment. We have had people we've bumped into later kind of tell us that they get it now--both the bad environment and the issues with my son and SN. I couldn't stay a minute longer than I did though. I would have crumbled.

[Mom28GreatKids]

I totally get this kbutton. In fact, we just left our fellowship partly because of judgement and lack of support. It was terrible. Our new church has a special needs ministry and tons of kids with ASD and DS- there are tons of foster parents and adopted kids in the church. It isn't perfect, but it is a whole lot better.

 

But I was one of those parents/ friends who just didn't get it, probably passed some judgement on others in my former life, so I can't blame those who are only parents of NT kiddos for not getting it. It is painful, and lonely!

 

Sent from my XT1049 using Tapatalk

[Heathermomster]

Nothing prepared me for how awesome my spouse is with the kids.  I mean yes, I knew he was great when we married.   I just couldn't predict the scale of the AWESOME.  It means a lot to have a man that doesn't flinch but stands firm in the face of adversity.

 

 

 

 

[kbutton]

But I was one of those parents/ friends who just didn't get it, probably passed some judgement on others in my former life, so I can't blame those who are only parents of NT kiddos for not getting it. It is painful, and lonely!

 

I think we have all done that to some extent! 

[SnMomof7]

How incredibly in-over-my-head I'd feel. I hear you, this is all so new to us as well.

[Mom28GreatKids]

It is nice to see those who are posting who have been in this a good while say things that show growth in character, relationships, etc. Jennifer Bogart, we are both in the overwhelmed stage, information overload stage, etc. It gives me hope to hear what these seasoned mommas have to say. :-)

 

Sent from my XT1049 using Tapatalk

[PeterPan]

How incredibly in-over-my-head I'd feel. I hear you, this is all so new to us as well.

:grouphug:  Main advice I was given when we started was to *build a good team*.  Surround yourself with a team of people to help you.  The more I surround myself with a team of people, people to help with behavior, people to help with the speech challenges, etc., etc. the better we are.  It's really a LOT for one mama to deal with at once, alone.

[Heathermomster]

Both of my children have something up.  One of them was born with a congenital birth defect that required life saving surgey by 8 weeks of age.  DH and I believed we were taking home a healthy baby but that was not the case.  Cognitively she is fine.  She has some handwriting issues and chronic health issues remain; otherwise, DD is fabulous.

 

DS has learning issues and was diagnosed while attending a very traditional private school.  DS was diagnosed when I was pregnant with DD.  Starting in 2nd grade, DS worked with a Wilson reading tutor three days per week for 3 years before I saw reading improvement with him.  By then, my DD as born, so her care took up a lot of my time.  Things went sort of fast.  I quit my engineering job and just settled in to taking care of kids full time.  Anyhoo..

 

DS is fabulous too.  Presently, the biggest deal with him is executive function, organization, chemistry, and Algebra 1B.  I have been googling and talking to people trying to find an Ed Therapist or someone who specializes in EF, but I am having no luck.  I never could find a tutor that was trained with dealing with dyscalculia either, so I read a bunch and became the live-in tutor. 

 

I guess I wasn't prepared for the life changes that came, but they were necessary and we were happy to make them.  I was not prepared for how incompetent the staff was at the school.  I am shocked by the lack of mental health professionals in my area.  I never imagined I would embrace technology for accommodations. (DS didn't watch TV the first two years of his life.)  I have finally accepted the permanence of my children's issues and have chosen to make the best of it.  I expect both of the kiddos will keep me up at night long after they have grown up and moved on.  I try to trust the LORD for they are ultimately His, not mine.

Edited February 3, 2016 by Heathermomster

[BooksandBoys]

Nothing could have prepared me for how impossibly hard it would be to have a baby who cried nonstop for 9 months and didn't sleep for more than 90 minutes at a stretch, and, despite all assurances, never really got "better." He's just a profoundly intense child.

 

Nothing could have prepared me for how hard raising the above and his ASD/ADHD/etc. brother would be on my marriage because DH would end up viewing all the issues as my fault. Yes, he's mostly stopped this now that we have diagnoses, but the damage runs deep.

 

Nothing could have prepared me for the social isolation and glares in public. I'm thankful that we've found amazing friends now, but even they struggle with the behaviors at times.

 

Nothing could have prepared me for the beauty of their quirks. The toddler who could stand on his head. The 5 year-old who could multiply and divide in his head and dream up the most complicated, beautiful stories. The intense child who is sweeter than imaginable with babies and animals. Their determination in the face of challenges. That they know I love them with all my soul.

[Lots of boys]

Hi, I haven't posted in a very long time but wanted to let you know your post really hit home for me. I have three boys and my oldest has a mild ASD and SLD (writing,spelling) and my youngest has profound apraxia of speech and ASD. Homeschooling is such a roller coaster ride every day. I know I am so lucky to be able to do this for/with my kids but I also know most days I am exhausted and a mess by the end of the day. It is so wonderful and so very hard all at the same time.

[nature girl]

I think the biggest change for me has been letting go of my vision of who my child would be...Attachment parenting always felt right to me, and I loved the idea that it could lead to more calmness, security and independence for children, more kindness, and more awareness of themselves and others. And then Anna came along...Despite AP she was always rambunctious, never calm or quiet, so social that she hates independent play, suffers from (mild) anxiety, and although she's kind in spirit, she cries at sad books and animals and wants the best for everyone, at this point she's unable to pay attention to the feelings of others, and often deliberately provokes them. And she has almost no self-awareness.

 

I'm still trying to teach all this of course, but I'll always have a girl who's very different from me. So I've basically been learning to let go and let God, she'll always be the fabulous, loving soul she was meant to be, and become who she's meant to become. I'm her shepherd and not her sculptor.

 

And I still have a lot of work to do on myself and those preconceptions...The other day someone told me what an amazing, fun and vibrant girl she is, and since then I've been realizing that the primary thing I feel about her is worry. I'm working on that now, spend 5 minutes with her and you'll see she's hysterically funny, even the exaggerated expressions she makes crack me up, she comes up with the most wonderful ideas and when I let go and relax I can appreciate how FUN it is to be her mom. So I need to stop looking at her as something to fix and take more delight in her amazing spirit and joy, and the way her whole body lights up when she tells stories or laughs. I really am so blessed.

[Mom22ns]

Nothing prepared me for how overprotective I would want to be of my SN child and how very much I would have to fight that urge.

 

Nothing prepared me for how mean people could be.

 

Nothing prepared me for how kind people could be.

 

Nothing prepared me for how often I would cry. (I didn't used to be a cryer)

 

Nothing prepared me for how close I would be to him and how hard it would be to let go.

 

Nothing prepared me for the day he went to college and told me "I am not disabled" and decided not to use any of the disability support services I had worked so hard to have in place. 

 

Nothing prepared for me how proud I would be of his every success, big or small.

 

I do agree with Lecka, having a SN child made me a better person. It made me look at others with compassion and understanding instead of judgement. I think I'm a little like the Grinch. It made my heart grow.

 

 

 

Edited February 14, 2016 by Momto2Ns