When the going gets tough...the tough keep going

[sarahbkribs]

Hi Everyone,
I am new to this forum..just joined today and wanted to introduce myself. I have a son who is 3 that has been on a g-tube (a feeding tube inserted directly into his stomach) since he was 3 weeks old. I was a part of another forum that dealt with tube-feeding and all of the issues with that until yesterday when I decided to look for a better avenue since now we are dealing with a different type of problem...behavioral issues. It has just been so frustrating and so exhausting. Everything surrounding my experience of motherhood has been just incredibly difficult. I dealt with a horrific pregnancy...polyhydramnios (excessive amniotic fluid), which caused me, a little person, 5ft 3 to gain 60 pounds. I was in and out of the hospital for pre-term labor (helo flighted and ambulanced) at different times since we lived in WA state and were two hours from the nearest non-military hospital. I was on bed rest for 3 months and during all this time they could really find nothing wrong with my son. He was born, I was relieved and thought my nightmare was over. Little did I know, it was just the beginning. At birth, he would sputter and turn hypoxic when he would eat. Took him to the pediatrician because I had a sense something was wrong and we were immediately taken to the Children's Hospital where we spent the next 2 and a half months straight trying to figure out what was causing his sputtering and problems with GI motility. Basically, every time he would drink formula, it would aspirate into his lungs in a sense causing him to drown. The doctors immediately said he could not eat by mouth, a feeding tube was put in place and that is what we have used to get him to where he is today. To this day, and through many extensive and exhausting and painful tests, we still have no answer. The bright side of the story is that he is doing much better now. We still have the g-tube but we have not had to use it since May 5th because he has been eating by mouth and has been able to maintain his weight without supplemental tube feedings. The eating by mouth was a slow process and we went through many therapies (occupational, physical, and speech) for 5 days a week for 2 and a half years. I have to say it really paid off and I am so thankful to be where we are today. But, where we are today is really exhausting, too. My son just qualified for a special needs program that will start at the end of the month. He made it in by 1 point on their scale and will now be going to a Special Education pre-school 5 days a week from 8-3. The hope is that he will start in a regular kindergarten when it's time. I am sorry I am rambling it's just been such a rough road and I am so tired. I know many of you, as parents, and caretakers, are too. My son went to a 2 year old class last year and got notes sent home every day for hitting, pushing, not following directions, throwing toys, taking toys from others, just everything you could imagine. I am worried that he might be ADHD but I know that they cannot be diagnosed until they are at least 5. My husband is only semi-supportive, I am a stay at home mom, and just yesterday he told me the reason that my son is like this is because I don't discipline him enough. It broke my heart because out of the 2 of us, I am DEFINITELY the disciplinarian. I am the one who is home with him all of the time. My husband is in the Navy and works 50-65 hour work weeks and then is getting his MBA on the side. It is just so stressful. This has all been so trying on our marriage and sometimes I wonder how much more I can take? I am just so deflated and discouraged and hope that my son gets better and can learn to somewhat function in the world. It makes me not want to have another child with my husband, which truly breaks my heart...it makes me question so many things....just wanted to post...sorry again for rambling but I have read your posts today and see that many of you have struggles, too, and it is ok to talk about them to get them off of our chests. Thank you for listening...Sarah

 

[nvts]

Hi Sarah! Welcome to the crowd!

First off, don't ever feel guilty about feeling feelings. They're exactly that. Feelings. Nothing more, nothing less. My philosophy on guilt in all of our situations is: Guilt is useless unless YOU'RE using it ON someone else to get what you want!

Your husband is doing what I call "armchair quarterbacking". There's always one who "gets it" when it comes to our kids, which ultimately makes the ride a little smoother for the onlooker. In the meantime, they feel quite comfortable letting you know that YOU'RE the one doing stuff wrong. It's natural, obnoxious as all get out, but natural.

You've been through a lot hon, so make sure you're taking care of you. He'll get his MBA, but in the meantime, if you don't take care of yourself, you'll be a stressed out loon before that happens.

Sounds great that he got a Special Education placement. Phone calls all of the time will drive a saint berserk!

Try reading Ross Greene's "The Explosive Child" and somewhere in the Early Childhood forum, there's info. about using that method on small children.

Welcome to the crowd! We're a fun bunch with a lot of collective experience. Make sure you stop into the Watercooler, that's where we hang out and goof off about pet peeves, funny things we've seen heard and basically share our joys and sorrows. That's where it's time for family to simply shoot the breeze!

Beth

 

[OpenWindow]

Hi Sarah, welcome to the board.

We noticed my son's behavioral problems when he was very young, just like yours. He got kicked out of daycare and luckily we were able to get him in a public school program, and got him an IEP so he could get Special Education services.

Has your son been to any doctors? You can start getting him evaluated now. My difficult child was diagnosed when he was 3 with ODD, then at 4 with ADHD and ODD. I advise you should try to find out now - it will help in dealing with the schools and early treatment can be the key. We are still looking for the right diagnosis, but it did give us a place to start.

Have you read The Explosive Child? It was a good start for me to understand how difficult child thinks a little better, and to start with a behavior plan that can work.

Linda

 

[BusynMember]

Is it possible that his physical problems are causing his behavioral problems?
I wish I could be of more help. If you want a thorough evaluation, I"d take him to a neuropsychologist (this is a psychologist with training in the brain--I'm thinking this could be neurological).
Maybe you and hub should have marriage counseling. Sounds like it is very tough for you and that you may be losing feelings for your hub. That's easy when you have a very difficult child and are basically raising him yourself.
This is a nice place. Others will come along.

 

[Wiped Out]

Welcome,
I can understand your exhaustion-you have been dealing with a lot. I would probably want to get an evaluation by a neuro psychiatric and a child psychiatrist. My difficult child used to get those notes home every day from day care too. It's good he will be receiving Special Education services at such a young age.

It really, truly is very important to be taking care of yourself through all of this.

 

[Sheila]

Gosh, I bet you are absolutely exhausted.

Posting about our struggles is therapy all on its own. This board and the members have gotten me through more than one day I can assure you.

It sure makes it tough when parents are not on the same page. Sounds to me like dad may need to put that MBA on hold and give you a break. You've been on call the first 3 yrs, now it's his turn. lol

Sounds like you need some R&R -- we call it "respite" here. lol

 

[smallworld]

Sarah, welcome. I'm glad you found us.

I'm sorry your little guy (and consequently you!) have had such a rough time since he was born. I have a tiny inkling of what you're going through because my youngest daughter was on a feeding tube two summers ago. She developed a choking phobia and refused to eat anything at all. It was very scary, but through medication and intensive feeding therapy, she is doing well today.

Is your son on any medications for his GI/motility issues? Has the Occupational Therapist (OT) noticed any sensory or other developmental issues?

Obviously, we're not doctors and can't diagnosis over the internet, but I have a suspicion you're not looking at ADHD. It's the "easy" diagnosis, one that is often made anytime a child has behavior problems. I'm guessing that all the trauma of your difficult child's early life may have led to anxiety, which is causing some "fight or flight" behaviors anytime he feels threatened (real or perceived).

Since your son is so young, you may want to seek an evaluation by a developmental pediatrician or a multidisciplinary team at a children's or university teaching hospital. Perhaps your pediatrician or GI specialists will have some referrals for you.

When you get a chance, please create a signature similar to mine below. It helps us remember your family details anytime we post responses to you. Here is a link to directions on how to do it:

http://www.conductdisorders.com/forum/showthread.php?t=8399

Again, welcome. We're here for you.

 

[Shari]

Hi. Welcome to the board. Sounds like you have been thru the mill with this little guy in every way imaginable! Hugs.

I'd definitely look into a pediatrician who WILL look at your son regardless of age. Early intervention is KEY to success for these guys, and waiting til they're 5 to start looking for answers really knocks off some vital time.

Good luck, and welcome.

 

[flutterbee]

I just wanted to offer my welcome.

 

[fuddleduddledee]

How difficult it must be to have these behavioural difficulties as well as the physical challenges.

When I first started seeking help for my son a book was recommended to me called Magic 1,2,3 (It also came in a Video and probably today comes in DVD format), and it might have worked if my son had been younger and without all the other issues he has. The Explosive Child worked with my son because he was older, but, I think I'd start with the Magic 1,2,3 with such a young child it might just work. If it doesn't, then, I'd try the Explosive Child. You should be able to get both these books or DVD's from the library.