Emotionally Drained - Streamwood,IL

All I can say right now is you are not alone!! I totally hear ya, I get so frustrated with myself when I cry on the phone (or just after hanging up) over my son and his "issues", it IS draining!! There are times when we make progress and I am so incredibly thrilled over something that seemed so ordinary with my first child. Then there are times that I think I can't do this anymore. Right now we are thankful to be in a time of huge progress (which unfortunately brings with it more meltdowns at home, but I'll take it for the progress we are making). Life is full of ups and downs and with having a child who has some special needs, I think those ups and downs are all the more pronounced. Best wishes to you and feel free to connct on here, knowing you are not alone!

sorry, i have no idea what you are going through but i can only imagine how hard it is. Best of luck to you!!!

I honestly don't have experience with this specifically, but, I have also cried on the phone to complete strangers with other issues. You are calling them for help. You don't need to justify that you are a good parent - the fact that you are looking for help is proof enough. The professionals you have called have heard a lot. If they aren't patient and understanding, then you can reconsider another place. When you call the pre-screening interviews, ask them for support groups (like the 1st poster said (yeah!). There may be special needs 'night outs' for you and your SO to just relax, especially since it seems like your family isn't supportive and/or may not give your sone the attention he needs when you are away.
When it comes to your family, maybe you have to just be short "We are looking into other avenues of help, and will let you know". That's it - end of the conversation.

Is it possible that there is a support group for parents of children with your child's issues? I'm not sure of the diagnosis, but could you find a group of parents that are going through or have been through something similar? I, personally, have not dealt with this, so I don't know what to say except that you and your husband might need to find a support group or get some therapy for yourselves so that you can relieve yourselves of these feelings of guilt. You truly are doing what is best for your child and you have to be able to cling to that when you're feeling down like you are, but that is so much easier said than done. I would recommend trying to get some help for yourselves and finding some coping techniques from others who have been there. I'm so sorry you're going through this and I wish you the best for your family and for your child.

You don't say exactly what the issues are but.........My daughter has had issues all her life. She has MMH. First thing I found out you need is a sense of humor!!! Without it....you're doomed!!! Next you have to think of all the garbage as a game...... strategy, rules etc. There were times that I had to make my daughter look so helpless and other times like she could do it all!!! Learn the game!!! Take what you can get....... I had a friend tell me in 1996 to go put my name on this list......I asked what for....she said just go do it. It was for the BDD's Waiver. We are still waiting for this waiver!!!! Since November of 1996!!!!!!!! Learn what's out there and get on the lists!!!! You will be overwhelmed..... you are NOT alone..... there are groups..... or I have numbers from NW Indiana if I can help send me a private message.

Also I don't know if you've ever read this......it's from Erma Bombeck, after you are done crying......you can start smiling!!!!!

God Chooses A Mom for A Disabled Child
by Erma Bombeck

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Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint, Matthew.

"Forrest, Marjorie; daughter; patron saint, Cecelia.

"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in midair.

God smiles. "A mirror will suffice."

Some things just aren't easy to talk about. You have to realize you are doing what you possibly can to provide him the best care within your power. When one of my twin sisters went into an assisted living home, I felt horrible and cried. I wished we could care for her ourselves, but we couldn't. The other one is in worse shape and she stays with my mother. My mother won't put her in the home and I believe it is out of guilt. Today, probably eight years later, I am perfectly fine with everything and realize, I couldn't handle them if I quit my job and tried everything possible.

As for the In Laws, you just have to take care of your family and leave them out of it if they are not constructive. My 15 YO nephew is undiagnosed, but there are issues. I have known this since he was a baby and lived with us. I mentioned it way back when, but my MIL was in denial and would just turn the whole thing into, "He is the nicest boy". Well the other day, I got a frantic phone call from her asking me to search the web for a doctor in the area for ADD or something because there was something wrong with him and her and the FIL and the Step MIL all discussed it and agreed. Well, I am much too distant from this kid to do anything like that, as I no longer spend time with him. I was fortunate enough to provide a doctor of a friend and let her take it from there since she was now concerned. So, like I said, if she is not constructive, do what you have to do and you are not obligated to tell her. That is what the privacy act is all about.

So to recharge, does he go to school? I think you have to be able to step away to regroup. As well, it may be a charge in its own just to cut the MIL out if she is negative toward this or in denial.

Best wishes.

Also . . . . give yourself some affirmations, some reminders
of how motivated you are and how strong you are
and how intensely you are working to get your son the help he needs.

Then, if MIL or FIL or whoever says [whatever] to you,
you can smile to yourself and remind yourself
what YOU KNOW that they don't
and let their [whatever] words just slide right off.

First of all, you are human and humans have emotions. You sound like a healthy human having healthy & correct emotions for all that you are going through. Therefore, reach around & pat yourself on the back because there are MANY people out there who do not have healthy responses to the "yucky" parts about life.

Secondly, no matter what YOU are your son's mother & YOU know best. You must continue to follow what your heart & gut tells you to do for him. It will lead you to the right places.

Finally, when people are being critical of my "doings" as either a mom, teacher, person... in my head, I simply repeat this ... "Oh, blow it out your (bleep)." I say that in my head while I calmly smile & then say something like, "Oh, thank you so much." Something a little sweet, but a little biting. eventually, people will get the picture that I don't mean "Thank you so much."

None the less, keep doing all you are for your son, it is a mother's love & determination that raises the best children.

I felt the same way this past week. I feel like I have too much to contend with. I feel overwhelmed. I just wanted you to know I understand where your coming from.

Hi K.,

I have a slightly different issue--I come from a family of 'special needs' adults and we have been in crisis mode for the last week. Without going into details-- I do have a counselor I see when I need to.

We aren't 'deserving' of the hands that we are dealt, and it's important to separate our selves from those around us that need us, as well as those that would belittle or criticize us. It sounds like you are doing the very best you can for your son, and it is so heart-draining to deal with those phone calls/interviews, to have to talk with someone who will never really understand how much you love your little boy. Your SO might also benefit from talking to someone. Being a preschool teacher, I have had to talk with parents about seeking extra resources for their children, and it's a horrible conversation to have. These parents dearly love and do the best for their children, yet often feel/take on a lot of guilt and blame for things beyond their control. They are very hard on themselves, when they really need a lot of compassion, empathy, and to be given a break and lots of understanding.

I hope you are getting some breaks, and do things that feel good for you. Getting out for walks helps me; sometimes I need to just turn my brain off and watch a favorite dvd or do some writing that I'll show to no one. Getting out with a friend is helpful, too, but I have found that sometimes I need more support than what is right to ask of a friend, and then, counseling helps immensely. Support from other parents and families going through similar circumstances can be found online, too. This is an important resource for you; I recently found a group online that supports people with my personal set of experiences, and having that common ground has been very validating.

Best of wishes to you.
H.

K.,
I have been there and you just need to stay focused on what you need to do for your child. Just keep telling yourself why you are doing this. Follow your gut and don't let anyone question you as a parent. Lastly, find a support group or therapist. You need to let it out. My son's diagnosis put a wedge between my husband and I because he felt like a failure dad and withdrew from the giving me any support. Make sure you support your SO, but also tell him that you need support too. You will get through this and you will have an amazing bond with your child.
Good luck,
C.

Dear K.,
As a mother of a medically complex (severe asthma, tons of food allergies, hyperinsulemic) child I can understand some of the challenges you are going through. I often feel criticized by doctors (that don't understand the different medical diagnosis and the treatments for them). We are constantly being given contradictory information and we as parents are left to sort it out. I have cried many times after appointments or hospitalizations for my son. My in laws know about my son's medical issues but constantly criticize him being sick, etc as some how being my fault. I try to focus on the amazing traits he does have-like he is so smart and a great problem solver and I share those traits with the doctors and specialists too, even if they are not smart enough to ask for them, so my son can hear them, which is most important. I talk with friends, other parents with special needs kids, there are online forums for families with special challenges, pray (a lot), etc.

Keep loving your kids, tell them how great they are and help them to know that you know their special talents (not just their special needs). Be kind to yourself and know that Doctors & Specialists do not know everything and are making an "educated" guess at things. Do fun activities with your husband during your date nights-try something new, get a massage together, etc. It does not have to be expensive, but something that will bring a smile to your faces. The best predictor of your child's outcome in life is you and your husband and your marriage. Keep advocating mama!

Hang in there! We are all cheering for you.

C.

:-) I admire how you are willing to advocate for your child's needs and not let other peoples' judgements deter you in any way. I hope you find support in real life. I know some moms found a local support group where parents with the same problems could talk freely, without being judged and blamed. She even went on tv to promote the group and encourage other moms to reach out. She and her husband were teachers with master's degrees and they needed other parents to understand and share ideas with.
You can google your city, state + autism or whatever the diagnosis is.

I feel for you. Is there a support group, perhaps on meetup.com where you can seek out other moms who are dealing with a special needs child? I think it would help greatly to talk to someone who has been there, and done that.

How about your friends, can you go take a break and do a girls' night out, just to vent and get your mind off things?

Know that you are a super mom and that you will get through this. You know that you are doing the right thing, no matter what your in-laws say.

First you have to remember that when you are talking to the millionth person about your son it is so that he can get the help he needs. I am a special ed teacher with 3 children. My 2 sons were ADD and ADHD and had to have a 504 plan. My daughter is LD and has an IEP in recieves special services so that she can get the most out of her education as possoblel She has deficits in reading comprehension. It is really hard when you a the special ed teacher to have children that need special services. My ex just felt like the boy could just buckle down and get it together and they really couldn't. Now that they are 25 and almost 22 they have learned how to manage the ADD & ADHD without meds, but in school they needed them to stay focused. I was really hard for my ex to wrap his head around the fact that his daughter would need special services. My son's were from a previous marriage, our daughter is his only biological child. Once she started to get services in 4th grade her confidence improved and so did her grades. She is now a freshman in high school with a 3.28 GPA. Remember that you are doing this to get him the help he needs to be successful in school. You didn't say what kind of problems he has but remember as a parent you have to advocate for your child. His disability is not your fault, but if you don't get him the help he deserves that will be on you. Do what is best for your son and tell your SO what a wonderful father he is.

Unless these people are paying your bills I would stop worrying about that aspect of it. NOW You need to stay healthy to help. This can take it's toll on you with your health.

You are doing what you can for your child. If you hear tones or attitude, be blunt and honest. I would tell them that they way they are looking at you "right now" (in the moment) is hurtful and unnecessary. Put their attitudes and inappropriate comments/looks back on them. Make them uncomfortable instead of making yourself crazy. This isn't something that you can push under the rug or ignore or "beat" out of your child. It isn't something you did or didn't do. Your parenting strategies may have to change based on their circumstances and so will their "family skills".

You are doing the right thing! The only way to handle this is to do what you are doing. If you are honest with the screeners/therapists etc, you are doing the right thing!!!

Blessings from Glenview!