PDA

View Full Version : NSBR: SPD moms, I need a support thread this morning


strangejen
11-27-2006, 06:11 AM
So you other moms of Sensory Processing Disorder kiddo's . . . can we talk?

Do you have problems at family gatherings? Thanksgiving totally sucked. Jake was out of his element, he has social anxiety AND transition issues, doesn't deal well with new places, oh and has major food issues . . . add to that, he didn't have anywhere to run around and play and get his energy out for 24 hours before the Thanksgiving meal. Suffice to say, it did NOT go well for Jake.

And the worst part is, NO ONE in hubby's family understands Jake's issues. (We were out of town with hubby's family and hubby wasn't even there, he had to work all weekend.) They don't ask me to explain what's going on with Jake, they don't ask about therapy . . . it's like they don't WANT to understand. Even my husband barely understands and won't read any of the MANY books I have.

My sister freaking borrowed all my books and did a report on the subject for her college class, so now an entire class of prospective elementary school teachers are educated about SPD! My dad is so laid-back and patient with Jake and very non-judgemental -- and the man is 73! My mom drives him to therapy to meet me and makes sure every day Jake gets the things he needs -- like a balanced diet, play time outside, quiet time laying down and resting, one-on-one help with writing and pre-reading . . . I mean, my family GETS it. I hate to be all us-against-them about it, but damn!

The biggest thing is, I am SO frustrated with all the work I do with Jake -- home therapy, basically -- and sometimes it seems like we're going nowhere. Or taking VERY small steps forward, then several back. It sucks to be in this no-man's land -- stuck between having a "normal" child and a child with special needs that are severe and that everyone understands and acknowledges. And I'm happy to do the work with him, I like spending the time together and I like helping him . . . but nobody freaking GETS it.

anyone else feelin' these things?

jen

Rynonut Mom
11-27-2006, 06:31 AM
I have felt that way at times, Jen! Matthew's sensory input's are not that severe, but throw him into a new place (going on an airplane to visit Grammie this summer) and he's a wild man. It is very draining to be on constinant watch.
We went to my parents home for Thanksgiving. He's been there since he was a newborn, so that wasn't too bad. Getting him to stay at the table while we ate, just wasn't happening, so he got to watch some of a movie as we finished.
Both of our families are very supoortive though, so that's a great thing! They may not always ask about all of his therapies, but they are supportive!
Hugs, Jen! :)

chic_mama
11-27-2006, 06:48 AM
:hug
I can totally relate. We went out of town to my dad's place for Thanksgiving. Roland just kept saying "I want to go home" the whole time. My side of the family is not around him very much so they don't really understand. We didn't get any outright comments about his behaviour but we sure got a lot of "looks". It's hard for people to understand who never had to raise kids like this. They think with enough "discipline" the kids will just shape up and start acting right. I felt so bad for my little guy because he was really trying - he was just so uncomfortable being away from home.

Don't give up though Jen - we have seen amazing changes this year. You are doing the right thing and it will get better. :clap

strangejen
11-27-2006, 06:57 AM
what I'm really tired of is them acting like my kid is "broken" or something just because he is different.

it takes a little extra effort to get Jake to warm up to you, but once he does he will totally interact and play . . . but they can't get past that initial stage where Jake is acting scared of them, it hurts their feelings or something -- despite the fact I keep trying to explain he just needs a little time.

there's also the fact that there is a 1 year old baby cousin now, and one to be born next month . . . so not only is Jake this weird kid now, he's being replaced as the one to pay attention to by the babies. But right now is the time that he NEEDS the extra attention. I guess it's going to get worse and he gets more odd during elementary school (because really? ALL boys are weird during elementary school!) It's not that I think he should be the center of their world, by any means . . . I just want them to treat him like a person!!!!

ugh.

jen

jax
11-27-2006, 08:05 AM
First of all (hugs) to you! It is really tough to be in the position you were in this weekend.

My son is autistic & has many sensory issues. He's older now (11) but I remember lots of similar situations when he was young. Our family situation was a little easier, since both sides lived near us. We quit going to any out of town things by the time he was 3, and only recently started again, it was just to stressful on all of us. But there was little support on my husband's side,they sound like your inlaws. It was very frustrating & took ALOT of time for them to get to the point they are at now. Still not ideal, but they are much more accepting & patient.

This is going to sound weird maybe, but it was MY attitude I had to shift in order for me to deal. I had to just accept that they weren't gonna be the way I/we wanted/needed/deserved for them to be. For whatever reasons they had, it was just going to not be my problem anymore. I only made token appearances sometimes, and quit making excuses or explaining his behavior. That was just who he was. I only answered questions if they were asked, and surprisingly it was the kids/cousins doing most of the asking at first. That is still how we deal with it, but everyone has gotten better-or maybe just more used to it.

BTW, my husband went to every family function he wanted to with my blessing. Sometimes he took my older son, sometimes I would drive seperately so we could leave earlier if I felt we needed to. My husband is very supportive, though he has never read anything about our son's issues. He only goes to meetings or appointments that I need him too. I had to accept that about him & really am ok with it.

ssexton
11-27-2006, 09:45 AM
Hey girl!

I'm so sorry this was such a rough holiday! :hug

Ben's issues are mostly with food, so Thanksgiving has always been hard for us too...You know, Grandma makes all this wonderful food, and the only thing he will even consider putting on his plate is some corn.. LOL

I can only speak from our own experience, and I know that every child is different...But, things have gotten much easier for us in the last couple of years. When Ben was 2, 3, 4, even 5 I despaired of him *ever* eating more than just a couple of foods without gagging. At 7, he really has learned some coping skills, and things have improved greatly. All this to say that when you are in the midst of things, it seems like such a long road to walk. And lonely too, when others don't "get" it. But, it does get easier...really.

And, for what it's worth, my dh never read anything about SPD, either. He would listen when I would share with him, but never pick anything up on his own...

BTW..I still have your book! :blush When things calm down, wanna do another Starbucks run??

Lauren Grier
11-27-2006, 10:01 AM
Hi hun *hugs* I don't have experience with it as a parent, but do as I worked with special needs kids before I had ce (and Terrell works with a very large range of kiddos, from special needs, to juvi delinquints, to kids that just need that lil extra support you know?) It's hard.. frustrating, I know to put all the time and effort in and not see much difference. I assure you though that you are making a HUGE difference in his life, even if you can't see it :) Most people honestly do not *want* to understand. It's too difficult for them to wrap their heads around it so they just *ignore* it. It's too bad for Jake :( that you have family like that. The most important thing for him is a supportive environment.. :(
Anyway, just wanted to give you more hugs. I know you guys do some awesome therapy with him already- but do you have an imagery type program you do? Basically just *rehearsal* for the actual event. It helps a lot of kids- some use picture cards showing the event (ie: a kiddo has difficulties with van rides, so you take a series of pics of them near the van, getting into the van etc- and then go over it several times a day leading up to the event reading the story, *Bob is going on a van ride. Bob walks to the van. Bob opens the van door * etc etc etc..) Others just have cue cards they read, dependant on their level. I saw great improvement using the imagery method- if you haven't already used/tried that it's a great idea for future "holiday gatherings".

Love ya hun.. Give Jake a big squeeze, thanksgiving must have been so hard on him.

AmyK
11-27-2006, 10:02 AM
Jen, I am right there with you. Big hugs! Our holidays generally stink big time, but there's no way to get out of Thanksgiving, you know? James came down horribly sick the day before Thanksgiving, so he wasn't feeling well anyway. But his grandparents came and got him in the morning, so he didn't get a nap at all that day, and by the time we got home he was in such a state of despair from the goings-on (new people, crazy new foods, being stuck in a chair for almost 2 hours) that we put him in bed at 5:30 to let him sleep it off. It is 4 days later, and he is still out of sorts and having crazy crying jags, it's like we just stepped backwards 6 months.

I am already trying to plan for Christmas at my house now, because I am not going to put him through that again!! It is a battle though, because my MIL is a major entertainer and thinks everything has to happen at her place. If it comes down to it, we may just do Christmas by ourselves this year. :eyeroll

strangejen
11-27-2006, 10:24 AM
Holidays suck. LOL. my best friend came over on Sunday afternoon and she had a horrible family experience this week, too, but for a totally different reason. We made a pact that we are NOT leaving town next year for Thanksgiving. LOL. I just can't deal with it again.

Most people honestly do not *want* to understand. It's too difficult for them to wrap their heads around it so they just *ignore* it.

Lauren, I think you're right . . . but I don't understand this!!! The day Jake was diagnosed I got on Amazon and ordered 8 books! And I spent the entire summer reading them. You would think that someone like THE KID'S DAD would want to read at least one of the books! He won't even read the hand-outs from our eating group therapy -- yet he gets totally mad at meal times when Jake doesn't act "normal." Well of course he doesn't, you idiot! That's what the hand-outs help to explain! And as for family . . . if someone in our immediate family had an issue and I knew I was going to see the child a dozen times I year, I would honestly want to know more about that issue so I would understand better how to interact. My friend's daughter has Downs, and when we first started hanging out, I asked her all sorts of questions! Because I wanted to know how to interact with her, what to expect, what she could handle, etc.

Can you tell I'm in a really bad mood today?

Shannon, yes, we need to do a Starbucks run. Is today too soon? I don't have to teach tonight!!!!

Jax, I guess I do need to change my attitude. I feel like I'm ALWAYS the one who is having to ignore what everyone thinks and just do my own thing. Hubby's grandmother told me when Jake was just a few months old that I really needed to stop nursing him. (I guess because nice girls don't nurse their babies beyond newborns?) They REALLY didn't like it that I nursed him until 14 months! LOL. And I didn't hide in a corner. Kid was hungry? I just covered him with a blanket and lifted my shirt. And I don't always wear make-up and I like tie-dye t-shirts and I never wear shoes . . . oh, and I don't cook. Ever. This makes me the devil, apparently. A complete failure as a wife. So I have the deck stacked against me as it is . . . and I am really so much nicer than I have to be, and I try really hard . . . but I kind of feel like it's hopeless! So maybe all this isn't so much about SPD, but more that hubby's family makes me insane?!!!!

I LOVE YOU ALL!!!!

jen

daly
11-27-2006, 10:26 AM
Oh Jen,
I can whole-heartedly commiserate with you!:hug I have a very high functioning Autistic/ Asperger's son. He is so close to 'normal' it actually makes the situation worse I think (than if he was more 'severe'). People just end up thinking he's ill-behaved...he must be lacking discipline...must be parents fault. :(

He's almost 13 now and things have dramatically improved since I began homeschooling him last year. Even my mil and fil were amazed at the 'transformation' at Thankgiving this year. He's calmer, controls his emotions much better, is more respectful. Still has food and smell issues, he's still convinced his sisiter is the 'enemy'...so life is not all peaches and cream here...but generally it is getting better, I think.

I'm blessed in that my parents and my in-laws have been supportive over the years. They didin't always 'get it'...but they weren't negative towards us.

I would say I put the most pressure on myself. I used to be way to wrapped up in what I thought other people thought. NOw I'm much more self-assured and confident that we are doingthe best we can.

I just gotta keep believing that love, stability, consistency will prevail.

Hugs to you and your family. Hang in there...it sounds likeyou are doing a terrific job!

Florida Cindy
11-27-2006, 10:30 AM
Jen,
I know what you are dealing with during family gatherings. This is what worked/works for us.

Lucas has sensory issue due to ADHD and Dyspraxia. Lucas, at 14, still has problems with new places. I always went throught the sensory routine with Lucas. His therapeutic music, tactile exercises, PT and OT exercises. We would try to let him run out his energy before we went to someone's home. When he was little, DH or myself would run beside him. As he grew older, we challenged him to beat us, who was driving in the car, to the end of a street, park, ect....We just made sure the area was very safe for him to run. We lived in the country and no one else lived around so safety wasn't much of an issue as it would be living in the city.

I would have DS, after his run, drink a high protein shake. The protein seems to even out the child. I knew he was getting nutrition and then I didn't worry if he didn't eat anything. I would have Lucas sit next to me or near me, even on my lap, if needed. I would hold him/hug him, whatever I could do to make him feel safe and perform some sensory exercises on his back while he was sitting with me. Little by little he would gradually move away from me to play with other kids.

Regarding the food issue....if he won't eat it, don't worry about it. He can sit with you or play at your side without interupting others. I would also reinforce his good behavior every few minutes. A few days before the event, we would practice appropriate behavior and pretend we are eating at someone's house. I reinforced Lucas with special play time or an extremely small sweet. If we felt the visit would not go well, then we would cancel. Sorry, relatives, the child comes first.

My Mother-In-Law and Mother didn't understand. I still went with my gut. Wouldn't you know, my Mother wouldn't let Lucas stay overnight at Grandma's without his medication. After 10 years, she finally accepted I have OCD and Depression! The family, as you said, does not want to understand. DH couldn't understand because he also has ADHD and some sensory issues. I did, however, talk about Lucas' progress with therapy, school, ect.....even if they didn't want to hear it. Now, after so many years, they are very proud of the young man he has become.

I understand your frustration with all the work you do with Jake. Yes, it's like 1 step forward and many steps back. However, please keep in mind, he is still young. When he begins school (kindergarten+) you will begin to see large leaps of progress. Then, when he becomes a teen, you will most likely be very grateful for his social anxiety! He won't want to hang around the bad crowd!

We have Lucas attend after school care so he can socialize with other kids. He also takes tae-kwon-do. He's been at it since he was five (minus two years off for medical issues). He is a red belt, working his way to a black belt (April 2007)

You must, absolutely must take time for YOURSELF by yourself! It's necessary for your survival. Even 2 hours a week to go shopping, library, book store, craft store, beach, museum, ect.....

Also, if you feel that you are often frustrated, please see a therapist regarding this issue. It happens to most caregivers.

Please journal or blog your feelings. It's therapeutic. Since you are a writer, it should be easy for you to do so. Also, since you have a list of therapeutic sensory exercises to do, make a list and write a little note by each one every day. You may not notice the progress until you write it down. Does Jake go to a pre-school? Does he take medication for his anxiety issues? Write down what he eats and jot down a note about his meal time experience. Have you tried music therapy? It works wonders with Lucas.

Please PM me if you have questions! I feel for you because I've been through it. It will get better.

Florida Cindy
11-27-2006, 10:41 AM
<<And I don't always wear make-up and I like tie-dye t-shirts and I never wear shoes . . . oh, and I don't cook.>> Oh, you are a dastardly hippie! LOL!

Jen, it really does get better when the kids grow older. Seriously, it does. As for the relatives who don't want to understand......screw 'em! If you talk about it (because you want to) and they don't respond, oh well. At least you've talked about it.

Also, Jake was diagnosed with sensory issues after much testing. They didn't have that kind of testing in their day....so it is foreign and will remain foreign to them. Accepting that their child spawned a child with special needs is not easy for them to accept. DH probably feels the same way about himself. Why face the reality? It's too hard for them to accept, let alone deal with it.

It's also okay not to go anywhere for the holidays. Order Thanksgiving dinner from one of those restaurants/grocery stores where there is very little stress for you. Stay home at Christmas. It's okay to do so. If DH doesn't, let him go on his way. He'll be back sooner than you think!

Does your DH have any sensory issues?

Florida Cindy
11-27-2006, 10:42 AM
Jen,
I know what you are dealing with during family gatherings. This is what worked/works for us.

Lucas has sensory issue due to ADHD and Dyspraxia. Lucas, at 14, still has problems with new places. I always went throught the sensory routine with Lucas. His therapeutic music, tactile exercises, PT and OT exercises. We would try to let him run out his energy before we went to someone's home. When he was little, DH or myself would run beside him. As he grew older, we challenged him to beat us, who was driving in the car, to the end of a street, park, ect....We just made sure the area was very safe for him to run. We lived in the country and no one else lived around so safety wasn't much of an issue as it would be living in the city.

I would have DS, after his run, drink a high protein shake. The protein seems to even out the child. I knew he was getting nutrition and then I didn't worry if he didn't eat anything. I would have Lucas sit next to me or near me, even on my lap, if needed. I would hold him/hug him, whatever I could do to make him feel safe and perform some sensory exercises on his back while he was sitting with me. Little by little he would gradually move away from me to play with other kids.

Regarding the food issue....if he won't eat it, don't worry about it. He can sit with you or play at your side without interupting others. I would also reinforce his good behavior every few minutes. A few days before the event, we would practice appropriate behavior and pretend we are eating at someone's house. I reinforced Lucas with special play time or an extremely small sweet. If we felt the visit would not go well, then we would cancel. Sorry, relatives, the child comes first.

My Mother-In-Law and Mother didn't understand. I still went with my gut. Wouldn't you know, my Mother wouldn't let Lucas stay overnight at Grandma's without his medication. After 10 years, she finally accepted I have OCD and Depression! The family, as you said, does not want to understand. DH couldn't understand because he also has ADHD and some sensory issues. I did, however, talk about Lucas' progress with therapy, school, ect.....even if they didn't want to hear it. Now, after so many years, they are very proud of the young man he has become.

I understand your frustration with all the work you do with Jake. Yes, it's like 1 step forward and many steps back. However, please keep in mind, he is still young. When he begins school (kindergarten+) you will begin to see large leaps of progress. Then, when he becomes a teen, you will most likely be very grateful for his social anxiety! He won't want to hang around the bad crowd!

We have Lucas attend after school care so he can socialize with other kids. He also takes tae-kwon-do. He's been at it since he was five (minus two years off for medical issues). He is a red belt, working his way to a black belt (April 2007)

You must, absolutely must take time for YOURSELF by yourself! It's necessary for your survival. Even 2 hours a week to go shopping, library, book store, craft store, beach, museum, ect.....

Also, if you feel that you are often frustrated, please see a therapist regarding this issue. It happens to most caregivers.

Please journal or blog your feelings. It's therapeutic. Since you are a writer, it should be easy for you to do so. Also, since you have a list of therapeutic sensory exercises to do, make a list and write a little note by each one every day. You may not notice the progress until you write it down. Does Jake go to a pre-school? Does he take medication for his anxiety issues? Write down what he eats and jot down a note about his meal time experience. Have you tried music therapy? It works wonders with Lucas.

Please PM me if you have questions! I feel for you because I've been through it. It will get better.

strangejen
11-27-2006, 10:50 AM
Cindy --
you have a lot of great suggestions. :)

We haven't tried music therapy yet . . . Jake is so resistant to listening to music because of how auditory defensive he is. I need to talk with his OT about that. She doesn't have a portable CD player and had mentioned I would need to bring one if we wanted to do music . . . maybe I'll just go buy her one for Christmas. LOL. We love her so much, I need to do something nice for her anyway.

It's hard for me that Jake doesn't like music -- well, he LIKES it, it's just hard for him to listen to. I'm a classically trained pianist and I have SO many piano music CDs, and I never get to listen to them! He's not ready yet, but in I think two years I'll start teaching him piano lessons and maybe that will help with both his auditory defensiveness and concentration.

I do want to put Jake into tae-kwon-do. And that's actually something my husband really supports and can do with him. I think we're going to do that next year. Right now Jake can't function well enough with following directions to follow along with that kind of a class setting. You know how you tell someone something and they're looking right at you and they don't hear you? Jake is like that SO much. His OT says it's common with a lot of the kids she works with, that the sound is literally not making it from his ears to his brain because his brain is so overwhelmed with other things.

He's in Mother's Day Out two days a week right now. He does REALLY well and his teacher says she doesn't have any problems with him. She's aware of all his issues and sometimes has to remove him from over-stimulating activities -- like music class -- and let him play by himself. But on the whole, she says he seems "normal." But the evenings on the days he's been in school are horrid. He's almost unbearable.

We haven't pursued the anxiety issues much yet -- we're waiting until he communicates better and then we'll go see a psychologist (his speech and communication skills are still a little delayed.) We're also waiting to see if therapy makes the anxiety less severe. Socially he's doing SO much better, just with the therapy and the schooling he's gotten since his diagnosis in June. But he does still have a lot of issues. No medication yet . . . hoping it doesn't come to that. But I am open to what the doctors tell me if they really think it will help him.

It's really so nice to talk to mothers of older children with similar problems!!! It helps to give me perspective!

jen

strangejen
11-27-2006, 10:57 AM
Accepting that their child spawned a child with special needs is not easy for them to accept.

ha ha ha ha . . . actually, that's SO true. And their perception of normal and what's ok is SO freaking narrow, they probably DON'T want to accept the fact that Jake's just different.

Does your DH have any sensory issues?

Actually, he totally has issues . . . But his issues seem to have more to do with his environment growing up . . . his mom died when he was 9 and his grandparents raised him. He was shy in the first place, and after she died he totally closed up and they let him hide in his room all the time, playing video games. He is 100% antisocial and it makes me insane. He doesn't like for most people to touch him. I'd say he's sensory seeking, but not in a hyper way like Jake is -- DH works out a LOT, lifts weights, rides bikes on dangerous trails, etc.

Now *I* have all sorts of sensory issues, especially with foods. I'm a tiny bit OCD-ish, also. But it's all stuff I've just learned to live with and make accomidations for. Nothing that interferes with every day life.

Interesting stuff to think about. :)

jen

jax
11-28-2006, 05:51 AM
I totally agree with how unfair it to have to deal with Jake's issues "alone". I really wanted my husband to be more involved, but on my terms. lol It took a few years actually for me to realize how unfair that was. Now, I realize he's actually TO overprotective. He just wasn't showing it in the ways I wanted/expected him to.
I think it is really hard for some people, men in particular, to deal with something being wrong with someone they love. It's not fair or right, but it's still just that way. You just can't change them. That's why I just decided to accept it and do what I felt I needed to.

Holidays & special occasions are great, but not if they are at the expense of you & your child's peace. Find a new way that works for you. One example is that my son absolutely HATED unwrapping gifts. So I started letting all the kids at the parties take turns opening one & then giving it to my son. My mom started using gift bags because of him.:) We brought our own food for him to the events we went to, or we go after he eats at home.

We also do the auditory therapy. Ours uses special headphones & it's pretty quiet. He can watch a movie while he does it. It seems to help him & he likes it.

I have to say Jen, that I am impressed by how much you've done for your son in the short time it's been since his diagnosis. I've followed some of your posts about it and it's amazing! It's just so much easier to go into denial about something like this but you've really worked hard. You deserve alot of credit for how much Jake has improved!

strangejen
11-28-2006, 06:17 AM
ok, Jax, you are SUPER sweet!!!

Jake LOVES opening presents, so that's not a problem. LOL. He made me wrap up a new toy for his dog this weekend -- it was just to replace another, wasn't a special occasion. But we wrapped it so he could open it for her. heh. I DO bring our own food most places we go, just so I know Jake will have something to eat!

I'm feeling a lot better about things today. Last night after I picked Jake up, we went to the YMCA and he played with other kids while I walked on a treadmill for 30 minutes. No problems. Then we went to the grocery store and he helped me pick out some food -- he had some social anxiety problems during check-out (doesn't like to be stuck with strangers looking at him and talking to him -- but the check-out people at Publix are SO nice!). We came home and had a mini "food school" in our kitchen -- mirroring the things we've been doing in the food therapy group.

I feel like I've absorbed enough of how the OT works with the kids and the food to be able to do it myself with Jake (I think we just have 3 weeks left in the 12 week program, so I want to get a head start on doing it myself.) I got Jake to taste strawberry applesauce and a kiwi, and then he ate FOUR baby carrots! This is MAJOR!!! I got him to taste them and take a small bite, and he just decided that he really likes them and started chowing down. I guess it's true that kids have to taste something 10 times before they decide if they like it!!!!

So all that has me feeling pretty good today. :)

jax
11-28-2006, 04:15 PM
That is great that you are able to work with Jake at home & have success! We are still only at "taste", but that's come a long way for us. :) Dylan is usually to busy laughing at my attempts. He is very stubborn but has a good sense of humor apparently. ;)

Our OT help us set up a "sensory diet" to do daily. That helps him, we do different exercises every day. One of the things is we have to blow bubbles through a crazy straw, he hates it. Probally because it's good for him. LOL

Glad you are having a better day!

digigrandma
11-28-2006, 08:20 PM
I just want to chime in with some support for you Jen. I don't have answers but I sure understand what you are going through for holidays. I have a 6 year old grandson who is autistic. He has many sensory issues, as well. He does not do well in large gatherings of people such as for holidays. Plus, he is on the GF/CF diet. My son, dil and grandson come for as long as they can and we all accept that and just are so glad they come. Even though he loves to come and play at our house when it is just Grandma and Grandpa he wants to leave after about 20 minutes when the whole crowd is here. We understand when they have to go. Sometimes, they drive two cars so that they can take turns leaving early. They feed him before they come and we don't even attempt to try having him eat with us. We have changed our serving to buffet style instead of everybody sitting down at one time at the table. That way my son and dil and grandson don't feel left out that they aren't seated at the table. I bet as he gets older it will get easier to attend the family events at holidays. Sounds like you are doing the right things with therapy. Believe me, progress comes, but it takes time. Hang in there. It is not easy and I'm so glad to see there are others here who are giving you good ideas and understanding from their experience.

Hugs and my best to you.
Merrilee

strangejen
11-28-2006, 08:56 PM
Merrilee, I want a MIL like you!!!!!! it sounds like you really understand your grandson, and that's AWESOME!

jen

woogiebop
11-28-2006, 09:23 PM
Jen,

Thanks for saving me the trouble of posting this thread...may I just say AMEN SISTA!

Seriously I thought I was going to lose my mind over Thanksgiving for all the very same reasons as you. We had an 8 hour car ride to get there, too, which surely didn't help.

We've been home two days now, and my kiddo still will not let me out of his sight, insists on being in physical contact with me at all times, and is just generally not himself one little bit.

So glad to hear I am not alone!

4PeasInMyPod
11-28-2006, 10:14 PM
We all went to my SIL's house for thanksgiving this year and it wasn't too bad. DS Dakota, who is autistic, ate only peas, then wandered into an empty room to play his gameboy. We didn't see him again until it was time to head home.

It's very hard to have a conversation with him, as he tends to lecture and talk at people, and he really doesn't get the point about manners, etc. I so wish that he would spend more time with us as a family.

He does seem to be making some progress since I've started homeschooling him this year. When we go out to pay bills or go to the bank, we rehearse what he should do and say - then I let him handle it while I stay in the background. Lots of stuff like that is what we've been working on lately; life skills that aren't taught at school.

We've always taken him everywhere we go, sometimes kicking and screaming, but I really think that is what has made him comfortable now in a variety of settings. Vacations, theme parks, museums etc. because I want him to live as full a life as possible.

Funny story: Last Wed on the way to speech, I told Dakota that his speech teacher would probably wish him a happy Thanksgiving and told him how to reply. So when she did, he told her "My mom told me that you would say that. Now I need to tell you to have a happy Thanksgiving too." LOL!

About the husbands - I think they are just grieving for the son they hoped to play ball with, watch football with, all the father and son stuff that isn't going to happen. I know my own DH internalizes, he won't read the books about autism that I've bought, or the articles I printed out. It's not that he doesn't care; I just think he feels so frustrated because this isn't something he can "fix", but I found something that works for me.

I e-mail articles to him and they actually get read! Last week he sent me a link to the latest Newsweek autism article! That was a first, believe me. I know firsthand how difficult it can we when the other parent doesn't want to talk about or learn more about a child's disability, you end up feeling that you're all alone and all the responsibility falls on your shoulders.

My DH is a good man, and a good father, I just don't think he can handle this whole thing, so I handle it because its just something I want to do. In return he handles those things that he is better at.

Whether you want to vent, or just need to share something, remember we're here for you! Lee

strangejen
11-29-2006, 10:59 AM
you know, I read that autism article in Newsweek this morning while waiting at the eye doctor. And it made me really sad. Not only am I not sure what the future holds for Jake, I'm so sad for all the families whose children have a much more severe diagnosis than Jake does.

And then I talked to the eye doctor about possibly bringing Jake in to try for an exam. THAT should be interesting!!! But I want to rule out vision problems as a contributor to his other problems. And the doctor is just the nicest man, and he says that even if Jake just lets him do a partial exam, there's a lot he'll be able to ascertain from a short visit, to rule things out. So now I just have to schedule that adventure. :)

I'll have to try the e-mailing articles thing. Actually, I'm having a bit of luck writing about it on my blog -- my husband reads my blog religiously. It's like the only way he keeps up with me! Last week when I wrote so much about SPD on the blog, he actually came home and started asking me some questions. The questions are all centered about his fear of Jake not being "normal," though. He's afraid he's going to be like in the "special" classes in school and not in a normal classroom. I told him that special needs kids are usually pretty intergrated into regular classes, and that they just get special attention aside from that. Even Meghan, my friend's daughter who has Downs, is in a regular classroom for a huge part of the day!

thanks for all your support, everyone!

jen

digigrandma
11-29-2006, 12:50 PM
Jen, I'm glad you opened this topic up for discussion. Many don't realize what families go through who deal with special issues like this. It is quite a challenge for couples and their families who may not all be on the same page for how to cope.

thanks for saying you'd like a mil like me! I'm trying my hardest to be a source of support for my son and dil and the little grandson I just adore!!

BTW, check out this LO I just posted today in the gallery of our grandson with his Grandpa on the day after Thanksgiving. We had him over all by himself to give his parents a day off and us a chance to enjoy him when he is most comfortable. (i.e. no big crowds, no noise, no demands, just time to play.)

http://www.digishoptalk.com/gallery/showphoto.php?photo=47010

SteinwaysMom/DebraTope
11-29-2006, 03:06 PM
Gee, I've never ever heard of "SPD" or "Sensory Issues" so I imagine it's kind of a new thing to someone who's never dealt w/it. Kind of makes me wonder what happened to people who had it before there was any research done on the disorder.

Sounds like DH's family is one of those types that is status conscious and sort of narrow. As a sort of boho hippie I know how uncomfortable it is to be around people w/that mentality. I once rented a room from a lady w/Multiple Sclerosis. Her family was kind of uppity and treated her like an outsider. We went to their house for Thanksgiving once and they stuck my roommate (a 42 year mother) at the kids table and barely talked to her. It was truly sad and I didn't enjoy being around these people at all.