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Frustrated with family who just don't get it
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Beebs2424 Offline
Regular

Posts: 18
Joined: Jul 2011
#1
Frustrated with family who just don't get it

Hi guys,

I am SOOOOO frustrated with my family (my Mom, Sister, Dad, Mother IN Law, SIs in Laws, etc.). No one understands anything about SPD. When I try to explain to them what is going on with my 10 month old son, they just want to act like it is not a big deal, he does not need to be in therapy for this... he just has eating issues, etc.

My Mom and I are actually not even speaking at this point because she believes that because I have my child on GFCF diet that he does not like any of the foods I give him. Mind you, we have a 10 month old. He cannot tolerate any texture or he throws up. So, I have purees of banana, mangos, berries, squash, sweet potatoes, regular home made mashed potatoes (with special butter of course), chicken and rice puree, beans, peas... I have SO MANY CHOICES for this child, but he just does not want to eat because of his sensory issues. He is failure to thrive. She had the audacity to say to me "I don't want to hear another complaint about his weight because of the diet you have him on." "He wants things like garlic bread, etc. and you cannot offer things like this to him,". Okay, first off -- he would VOMIT from the texture of bread. He CANNOT have gluten. He has done markedly better since he has been off gluten -- and I have tried the gluten free bread and he HATED it -- the texture was too much! The in laws don't even believe that he needs therapy so they have all but disowned me -- thinking that I am running my baby to doctors unnecessarily and that he is in therapy that he does not need! Now, who the heck would put a child in therapy twice a week for 2 different things when he does not need it? And what Mom would want to run her child to therapy 2 times per week if she did not have to?!?!?

I am sorry I am ranting here, but the people I would expect to get the most support from -- my Mom and in laws are the nay sayers that think I am somehow doing my son a disservice by getting him the therapy he so desperately needs! The in laws have stopped calling me and it is awkward at best, and my Mother has all the answers on why what I am doing with my son is wrong or not working.

I know that SPD is a newer diagnosis in the grand scheme of other disorders, etc., but has anyone run into this with their families? I keep getting all of this unsolicited advice -- "if you just do this with him, he will respond like this. We have had lots of babies" "He's got your number". He is 10 months old for pete's sake!!!

UGHHHH -- sorry to vent, I am just SO frustrated. I am constantly bouncing my son, brushing, joint compressions, swinging to help and I am getting all this lip that it is for nothing, not necessary, and that "he will just grow out of it".

Thanks for listening to my rant. I feel better getting it out and hoping that I am not alone on listening to family members that just don't seem to get it!

Ashlee
Mom of Tyler
Step Mom of Ben, Maddie and Jenna
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tdiddy71 Offline
Account not Activated

Posts: 1
Joined: Aug 2011
#2
RE: Frustrated with family who just don't get it

Hang in! My son is 8.5 years old and he was dignosed when he started kindergarden. I have been trying to get the school to understand and this year as he enters grade 3 my foot is coming down hard! His grade one teacher looked down at me because I was not forcing him to eat fruits and veggies. She just did not get it what it was like for him. This year... I went out and bought a book and donated it to the school to help them understand. Just keep fighting for your son to get him the help he needs. I am lucky my family understands but my ex husbands family try to support our son but they lecture him all the time about his eatting.
(08-23-2011, 12:23 PM)Beebs2424 Wrote:  Hi guys,

I am SOOOOO frustrated with my family (my Mom, Sister, Dad, Mother IN Law, SIs in Laws, etc.). No one understands anything about SPD. When I try to explain to them what is going on with my 10 month old son, they just want to act like it is not a big deal, he does not need to be in therapy for this... he just has eating issues, etc.

My Mom and I are actually not even speaking at this point because she believes that because I have my child on GFCF diet that he does not like any of the foods I give him. Mind you, we have a 10 month old. He cannot tolerate any texture or he throws up. So, I have purees of banana, mangos, berries, squash, sweet potatoes, regular home made mashed potatoes (with special butter of course), chicken and rice puree, beans, peas... I have SO MANY CHOICES for this child, but he just does not want to eat because of his sensory issues. He is failure to thrive. She had the audacity to say to me "I don't want to hear another complaint about his weight because of the diet you have him on." "He wants things like garlic bread, etc. and you cannot offer things like this to him,". Okay, first off -- he would VOMIT from the texture of bread. He CANNOT have gluten. He has done markedly better since he has been off gluten -- and I have tried the gluten free bread and he HATED it -- the texture was too much! The in laws don't even believe that he needs therapy so they have all but disowned me -- thinking that I am running my baby to doctors unnecessarily and that he is in therapy that he does not need! Now, who the heck would put a child in therapy twice a week for 2 different things when he does not need it? And what Mom would want to run her child to therapy 2 times per week if she did not have to?!?!?

I am sorry I am ranting here, but the people I would expect to get the most support from -- my Mom and in laws are the nay sayers that think I am somehow doing my son a disservice by getting him the therapy he so desperately needs! The in laws have stopped calling me and it is awkward at best, and my Mother has all the answers on why what I am doing with my son is wrong or not working.

I know that SPD is a newer diagnosis in the grand scheme of other disorders, etc., but has anyone run into this with their families? I keep getting all of this unsolicited advice -- "if you just do this with him, he will respond like this. We have had lots of babies" "He's got your number". He is 10 months old for pete's sake!!!

UGHHHH -- sorry to vent, I am just SO frustrated. I am constantly bouncing my son, brushing, joint compressions, swinging to help and I am getting all this lip that it is for nothing, not necessary, and that "he will just grow out of it".

Thanks for listening to my rant. I feel better getting it out and hoping that I am not alone on listening to family members that just don't seem to get it!

(This post was last modified: 08-31-2011, 12:16 PM by Sila.)
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LynnNBoys Offline
Regular

Posts: 277
Joined: Dec 2010
#3
RE: Frustrated with family who just don't get it

Ashlee, Big big hugs! Your situation has to be so so hard! But you are doing the right thing for your son! But I know how awful it is to hear those things from your family. My mom is always on my case about my younger son's picky eating. Sometimes I think it might be good that she's 1000 miles away and we see her twice a year.

I didn't have too much trouble when they were young. My older son wouldn't eat applesauce or mashed potatoes because of the texture and then around 3-5 yrs he would freak out at hot food. So I would cook his dinner then put it in the freezer for 5 minutes. He finally had soup for the first time when he was 9. He's very good now about trying new food. Younger son was a great eater at first. Can't think of any food issues in the beginning. We had delayed peanut butter and nut products until 2, like Ped recommended. But then once we could, he never liked PB & Js. He'll eat a peanut butter spoon but not PB on a sandwich. So he eats grape jelly sandwiches with creamy PB on a spoon on the side. Then he stopped eating those, as well as other food. From 4 years old and on, he has been losing food that he used to eat.

But back to the comments. I started going to a psychologist (one of the doctors in the office my son goes to) in the beginning of this year. Partly to help me with my depression and partly for support for ME about my sons. Hubby rolled his eyes at me when I got wiggle seats for the dinner table since they were usually tipping their chairs or getting up and he was constantly yelling at them. Well the yelling isn't helping so I'm trying the wiggle seat. Other family seem to wonder why I'm bringing them to this or that therapy or to social skills group, doing all this stuff for them. They're fine, they say. It was SO nice to hear the psychologist validate me, that these things ARE helping.

You are doing the right thing! This will help your son to grow up and be able to do things that all the other kids do, be able to tolerate any food that he wishes to try. It's probably going to be hard for a few more years, but hang in there, it will get better.

I don't know. You may have to tell your mom that the discussion about how you feed your son is closed. I'm not sure which would be harder, to tell her that or continue to hear those comments from her.

HUGS!
Lynn Shy
mom to 2 boys, one avoider and one seeker
(This post was last modified: 08-24-2011, 12:18 AM by LynnNBoys.)
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beck7422 Offline
Regular

Posts: 342
Joined: Jun 2010
#4
RE: Frustrated with family who just don't get it

No person would want to take a Baby (10 months old still counts in my book) out anywhere twice a week let alone to a therapist unless they were desperate. You should point out what a major pain in the ass it is for you to keep doing this and you are doing it for your child to help him learn to eat more foods.

It is tough when family is in denial that something anything could be wrong with the health of a young family member. It is common to deny it if the problem is genetic and the chances that the person in denial also has that problem are high. THEY survived to adulthood without special care, why can't your child...

My parents always told me I was a "good" baby. However, in retrospect they had to do a lot of accommodations for me because of my sensory problems even as a newborn. They just didn't think of them as a big deal because my sister was a "bad" baby (shrieking neverending).

Although you don't want to torture your baby, you may need to have your mom be responsible for the care of your child for two days without your intervention (you should take those two days off and go on a vacation where you can do something you couldn't do with a baby in tow). Then hopefully she will see all the problems that you have seen with your baby for herself. Provide her with the list of things to do to care for him when he has problems. Provide her with the "safe" food (even if she "tries" something else).

If two days seem too much, then just take one day off. She needs to cover for you for at least one meal for the baby.

All caretakers, when dealing with any disability, need at least one day off a month to themselves or they break themselves. It sounds like you are reaching that stressed mark and you really need some time to yourself. Many young parents need the time off and think that it isn't allowed to them for some reason.
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AngelaVA Offline
Regular

Posts: 163
Joined: Nov 2010
#5
RE: Frustrated with family who just don't get it

http://www.amazon.com/dp/0310247454/?tag=googhydr-20&hvadid=3185865041&ref=pd_sl_93ztorsgri_b Nothing to do with SPD but relationships, but I suggest this book. Practice some lines and use them as needed i.e. You are being rude and unhelpful, I need you to stop now. This is his food. You may not feed him. This is our decision. This is his medical need. This is my child and you must respect my rules. I will not discuss this with you anymore. It's time for you (or us) to leave now. I think it is likely that you need more distance from these people for a time while they wrap their head around the situation and you get a break from their negativity. In my experience no support is better than negative support.

I have to disagree with leaving the baby in the grandmother's care. The baby deserves to be cared for by people who understand his needs and respect him. Sending him off with someone who does not would be very traumatic and likely to cause more regressions for him. Parents need a break yes but for it to be a productive break it needs to be by a caring responsive caregiver. I would never leave my children with anyone who did not respect me. It's not a baby's job to convince relatives of his special needs, it's their job to accept and respect them or not. Turn your focus to finding supportive friends ask your OT provider and Early Interventions for parent groups, ask your local autism society about groups and about a mentorship program, when you do your Early Intervention if they find him eligible ask about respite care, if they don't know ask them who would know. In the meantime pass the baby off to his daddy as often as possible for you to take a couple of hours to have a bath or coffee with a friend or whatever will give you a mini break. Practice doing this often.

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Beebs2424 Offline
Regular

Posts: 18
Joined: Jul 2011
#6
RE: Frustrated with family who just don't get it

Thank you guys so much!!! So many great suggestions and I agree with all of you -- this is so hard but I am doing the right thing for my son... whether anyone else understands, likes it or not!

I want so badly for my extended family to understand and support me, and hopefully they will come around in their own time. Or maybe they never will... I think I will begin to put some distance between me and them for now.

Angela, thanks for the recommendation for that book... I am going to order it on Amazon. I do not need to be judged or pushed around about my and my husbands decisions for my son. I will be asking about respite care too when EI comes out next week again. I would rather have no support from my family than negative support.

Beck, I totally agree about getting a break -- I do need one... but I fear that the care from the Grandmas that will go on for my son will NOT be what it needs to be from a sensory diet and even potentially food perspective... so I am a little nervous there. I know I can trust one of my good friends and I will look there for support too.

Lynn, I think it is AWESOME that you are seeing a psychologist -- I am too because of all of this. I have to take care of me... even though sometimes my son comes with and tears around the room... it is still FOR ME. And good for you for taking your boys to social skills groups and the like -- I will be doing the same as soon as it is age appropriate, whether any family likes it or not. It is about giving my son the BEST chance possible in his life and I love him so much that I will do anything to make his life the best it can be!

Tdiddy -- sorry to hear that you have had so many issues with judgement at the school! I am already seeing that at such a young age and hopefully they will come around intime too.

Perhaps we can all consider ourselves blessed to see people and the world in a similar way to the way God sees it? For all of its prejudice, judgement and cruelty and ignorance. I mean, I see it so much more clearly having a son with special needs now than I ever knew existed! I can only imagine how much more I will see this as we progress through life with my son... he is only 10 months and it is already so prevalent...

Thanks again to you guys... I don't know what I would do without the support of people like you!!!!

Hearthug
Ashlee
Mom of Tyler
Step Mom of Ben, Maddie and Jenna
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beck7422 Offline
Regular

Posts: 342
Joined: Jun 2010
#7
RE: Frustrated with family who just don't get it

On second thought after reading the posts since I posted, leaving your child with your mother before she has accepted your rules and care instructions was a bad suggestion from me.

I am happy that you will be attempting to find some time for yourself.
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