any other moms of a special needs child ever feel discouraged?

Marti - posted on 06/27/2011

Dear Sarah, I hired a special ed. advocate, fought almost daily for the teachers to comply with his IEP, wrote letters to the head of special education/superintendent/State superintendent, volunteered AT the school so I was available when there was a problem and could hear about it and work toward resolution IMMEDIATELY and documented, documented, documented every call, complaint (by either side), incident, test and assignment. I had constant meetings with the teachers (who loved that....NOT!) and basically gave four years of my life to the school and the problems it was causing. My son needed constant encouragement and sometimes threats to keep him in school but we did it.

A lot of prayer and positive thinking doesn't hurt, either!

Khrisy - posted on 06/26/2011

YES TODAY WAS ONE OF THOSE DAY AND I CANT BELIEVE I GO THRU THIS UNCONDITIONAL LOVE KEEPS ME GOING BUT I DO NEED SUPPORT

Sarah - posted on 11/25/2009

Quoting Crystal:

Hello my name is Crystal. First of all have your child an MRI done to see if he has Cerebral Palsy because that is exactly how my son is. He cant walk, talk, crawl, sit up on his own , or eat. He is G-tube fed asa well. I dont know how you do it by yourself. I am very blessed that my kids dad is there and he helps me. I used to have to do the same thing sounds like to make Keith go to the bathroom. Try another milk, it worked for me. Sounds like it has to much iron in it.Yes I get discouraged too and I have help. You know what I do when I feel like thta? I remind myself that God gave me Keith for a reason because the docs said he would not live an hour. Shows you who is in control. I have my days when I just cry and feel sorry for him and feel like I cant handle it but I just pray.I live in NC and would love to get to know you and your kids. I have never meet anyone whos kid has exact problems as Keith. Please call me sometimes if you would like my number is 252-353-5477. I hope to hear from you. Take care.

Hi Crystal,

 Thank you for your reply..........Isaak has had numerous MRI's and CT scans done. We believe it to be CP but the doctors refuse to diagnose him as that..they feel there is an underlaying genetic disorder ..but he hs been to the genetic specialist numerous times and they never have found anything wrong with him geneticly.   He also has some Autistic tendancies but they wont diagnose him as that either......Isaak's MRI's and CT scans have shown he has microcephaly (small brain mass), and he also has positional plagiocephaly..from tocticollis issues.  Isaak's cord was around his neck at birth and we believe he was deprived oxygen since the Dr. forgot to check for it and the nurses where screaming when he came out...he was extremely blue and his apgar scores where none exisitant. Within 4 hours we knew something was seriously wrong...he started vomitting serious amounts of fluid...and turned blue and stopped breathing ...... and he had not eaten yet, they gave him oxygen for the first 48 hours and placed a tube down his nose into his stomach to remove all the fluid. He produced large amounts of acid...and nobody could figure out why. He was unable to latch correctly and so I pumped for 2 months. I took him to the Dr. 21 times the first 2 months telling them he would not stop vommiting 3 foot puddles of vomit and was getting weaker. They ignored me " and wrote that I was over paranoid" in his chart.  And then finally at 2 months they tried to send me home and I started crying cause I knew he was going to die if I did...they called for a consult of a different Dr. and he walked in and took one look at him and started yelling at them for the fact they where going to send us home..and informed them the baby was dying..and going  straight to the hospital..( they also tried to blame me for him being malnourished..I cussed at them and told them to go read his chart 21 times in 2 months I took him in and there blaming me I dont think so) ..we fought Dr's for years and finally at 3 and a half he got his Gtube....he has since gained 23lbs...Isaak is able to sit up on his own now, drink some formula by mouth, he can scoot himself on his butt to get places, he is also able to pull himself into a tall kneel, and can stand with constant assistance..for around 1 minute at a time.  He is still none verbal....and I am not sure of his comprehenstion level....he can do things like give you his hands when you as for them..but I dont know if its from telling him or him seeing your hands being there??? Not sure? He is a sweet kid and I rarely have any diffuclties with him..its just the constant care he needs that is makeing me so tired.........We live in Oregon..but I am from Georgia..what part of N.C are you in? How old is your son? Love to you..I am going to add you to my circle and we can keep in touch................... Love Sarah

Sarah - posted on 11/25/2009

Quoting Marti:

Dear Sarah,

He has applied three times for medical assistance and been turned down. He now has an advocate who believes she can get that assistance for him. We're waiting. Social Security says he is not disabled "enough" hence nothing is available there. We have more records and apps and papers than I ever had for the other 5 kids!!!!
Marti

Marti,

I am so sorry that they keep denying him his benefits, and yes the advocate should help you allot..there is so many programs out there. Isaak has a case worker through the department of disability services. She helps me with his Dr. appointments ect. and helps stand up for Isaak when the Dr's wont listen to me. As of right now she stands her ground with them...and I think the Dr's dont care for her much since she wont back down until we get what we want. I am so tired of fighting, so I am glad she is willing to do it for me.  Isaak has been denied too, I am going to reapply next week ..and see what happens. I know there is some lawyers who handle these cases and they only charge you if you win the suit..and at least here they back pay you from the first time you applied so they take there percentage out of that money....and yeah I know all about the large charts Isaaks is over 1000 papers and he is only 5....good luck to you and your family

Marti - posted on 11/25/2009

Dear Sarah,



He has applied three times for medical assistance and been turned down. He now has an advocate who believes she can get that assistance for him. We're waiting. Social Security says he is not disabled "enough" hence nothing is available there. We have more records and apps and papers than I ever had for the other 5 kids!!!!

Marti

Crystal - posted on 11/25/2009

Hello my name is Crystal. First of all have your child an MRI done to see if he has Cerebral Palsy because that is exactly how my son is. He cant walk, talk, crawl, sit up on his own , or eat. He is G-tube fed asa well. I dont know how you do it by yourself. I am very blessed that my kids dad is there and he helps me. I used to have to do the same thing sounds like to make Keith go to the bathroom. Try another milk, it worked for me. Sounds like it has to much iron in it.Yes I get discouraged too and I have help. You know what I do when I feel like thta? I remind myself that God gave me Keith for a reason because the docs said he would not live an hour. Shows you who is in control. I have my days when I just cry and feel sorry for him and feel like I cant handle it but I just pray.I live in NC and would love to get to know you and your kids. I have never meet anyone whos kid has exact problems as Keith. Please call me sometimes if you would like my number is 252-353-5477. I hope to hear from you. Take care.

Michelle - posted on 11/25/2009

I tell you I feel your discouragement. I have a son that was diagnosed at age 5 with an incurable disease. Where he use to walk and talk and run and kinda help to take care of himself. He no longer can do that. He is total care. Even though I don't have as many children as you. I have one daughter who is 8 years and well, I know the struggle of taking total care of my son as well as being there for my daughter. the father is not involved but that is ok because my faith keeps me going. i work full time graveyard so i am bless to be able to even get 3 hours sleep in a day before going back to work. Know that you can make it. And I believe this group with the support of being there can help you just knowing you are not alone. Remember that God will never gives us more than we an bear. I believe that with all my being. If I can make it so can you....YOU ARE NOT ALONE !!!!!!!

Gayna - posted on 11/24/2009

Quoting Sarah:

any other moms of a special needs child ever feel discouraged?

I am just having a rough day today, and feeling discouraged.........my son has been handicapped since birth and still doesn't have an diagnosis..and is now 5. He is full care as he is unable to crawl, walk, talk, eat ect..... and he has a G-tube for feedings. I am exhausted from all the care he needs and I also have 3 other children...who are not special needs children..but who are 6 and under, the youngest being 4 months old. I am angered because his father has moved 6 hours away and maybe spends 4 hours with him every 3 months, and I get to care for him day in and day out without help from his father at all...including he is not paying his child support. Which as you moms know could really help with these special needs children and special items that my son needs. I am more angry today than usual since I got to clean out.... my son who has major constipation issues....and gets really bad impactions ..and the procedure I have to go through to clean him out is HORRIBLE! I hate doing it and my son cries the whole time ...as I can imagine its not comfortable for him at all to have it done. It is just days like this that his dad was here and I could say ok...I am going out for a few hours and your son needs cleaned out, and see what he says or does! I love my son so don't get me wrong...I am more angry that his dad can just walk away and go through life without helping his son. Am I alone in this or are there other moms in the same situation?

good grief you are a wonderfull mum even tho stressed out.    and i thought i could struggle, and my hubby is with us.  i have four children and my 2nd has klinefelters syndrome which affects/ed  speech and development. he is now 15 and has started on hormone injections for rest of life. he has violent tendencies and doesnt think about consequences even being stood down from school where he attends a unit for children with disabilities.  my youngest also got "blocked" up having to be fed medications to try make  her go.     she has jus started school and her system is now working on its own but still tends to wet at night.   both of us are now seasonal workers. i can understand the frustration and anger as ive been there too and i have a hubby and other kids at home too help!.  we also have assesments done at the public hosp to check up on things and get a dissability allowance for my son,       i know my situation is nothing like yours and i feel for you and what u are dealing with.     is there any health service u can ask for help even for  a few hours a day to have a much needed and well deserved break?    all the best   gayna

Rhonda - posted on 11/24/2009

You can vent to me anytime! Also due to your son's medical issues your local school board can't prevent you from asking for a home tutor for your son or homeschooling him for that matter! You may have to press the issue, but it will be worth it to keep your son as well as possible. God bless and Happy Thanksgiving to you as well!!

Sarah - posted on 11/24/2009

Quoting Marlene:

My son is 10, does not speak, walk, epileptic, partially sighted and yes the constipation issue. How do you clean his tummy out? I use enema's every 3 days and it works for him.
We all feel frustrated, especially at 2 in the morning when one has had no sleep.
You really need to try to get help. And you need to get out or you will lose it. Try to let go and explain to a care giver what to do.
Maybe you have special needs mom in your area, they are the best for help.
Prayers are with you.

We have to do a manual disimpaction plus major enemas with like 48 oz of water and glycerin. He also Is taking and adult size dose of Miralax each day...extra water through his feeding tube..plus is on a formula that has extra fiber in it..as of yet nothing seems to be working. And I completely understand the no sleep issue...Isaak hardly ever sleeps through the night and cries throughout most nights....I hear everything..and cannot sleep because of it...

Sarah - posted on 11/24/2009

Quoting Diana:

Our son is 15 years old, a Freshman in H.S. and has Bipolar with Anxiety and Depression. We put him in the hospital to get re-stabilized on meds for a week. He had a relapse and now is not going to school. After tring everthing with the 504 plan, still not working...We are now awaiting truancy court. He is a good kid, no drinking or drugs and has a big caring and compassionate heart. But, he is being treated like a victim. I am a Mother in the middle of Doctors, Therapists, School, our family, the law and our child....I feel like 500 percent is not enough....How did you get your son through school, Marti? I would love some tips...I feel so helpless. I had to leave my job to take care of these issues, which led to us losing one of our vehicles....Although, our son is the most important over materialism.

Diana,

Can you explain the truancy court thing to me...I am not sure about this? Are they saying its your fault your son is having relapses? I have been accused of neglect by Dr's here in our town...and I pitched a fit and told the Dr. to get the F away from me until they read through his chart and saw how many times I had taken him in for the same issue at hand...which was 21 times in the first 2 months of his life...and they tried to say it was my fault he was malnourished.....I dont think so....they actual wrote in his chart that "the mother is over paranoid"..when your son will not stop vomitting 3 foot puddles of vomit..no wonder your worried....let me know when you get a moment about the court thing...love to you.

Sarah - posted on 11/24/2009

Quoting Marti:

Definitely. My 21 yo son has ADHD, NVLD, anxiety attacks, chronic ear and sinus infections and some real problems with addictive personality and yielding to peer pressure. Atop all that he suffers from depression! (Can you blame him?) Getting through school was a fight all the way to have teachers work with his IEP (Individualized Educational Plan) and now that he is graduated, our insurance doesn't cover him. We aren't rich people and medical costs are so high that we can't afford to have the care he needs. You bet I get discouraged....and so does he!

I am sorry to hear about all the troubles you and your son have faced, and are still facing. Does he qualify for any Social Security benefits or medical help through the Country you live in? My oldest brother is handicapped as well from a forcepts birth, my parents went through the same thing with him. He is now 37 and only receently did he get his disability.

Sarah - posted on 11/24/2009

Quoting Barbara:

hi, I am the mom of 3 sons..34, 32 and my special needs son is 28, yes they grow up, yikes!
Chris has R hemiplegic CP, epilepsy, has a V-P shunt for hydrocephalus, panic attacks. He is mentally retarded from seizures and functions in range from 7-13.
School was a blessing for me, in California they start special ed at 3 years old, check to see what the age is in your state, sometimes the school district acts like it is a secret what is available. I saw where you spent so much $ on Therapy, check to see if there is an Easter Seals or United Cerebral Palsy or Shriners around...they all deal with disabilities and some offer therapy and other services.
I understand you when you are unhappy about your ex, sadly, he is a poop and won't change...it IS a blessing though that you have a wonderful man in your life, hooray! Do not feel guilty about the actions of another person, you can't control that, only control your reactions (I think you are doing great btw).
Many agencies who provide respite provide a training session..an hour or so so you can be there with the caregiver (probably an LVN) since he is tube fed, they are caring and actually pretty protective of their patients. There are checklists of what they do, and you get to sit down with a nurse and write out schedules, what his motions mean etc and keep them in a notebook for the nurses reference.
I do hope this all works out for you, and you get respite, even if it's at night so you can sleep like a person...remember those days?
When I used to get discouraged..when Chris would have multiple seizures a day and I couldn't leave the house for 5 minutes for over 6 weeks sometimes..it didn't seem like there would be an end, but, somehow this works out.
School Will be a blessing for you and..hmmm...bet there is a chance SSI might have to provide nursing care as an aide for him during class. It will be tough to put him on that bus the first few weeks, but it does get easier, trust me!
One last thing..the constipation thing..it sounds like you need a bowel program for your son. This would include stool softeners, laxatives as needed and enema every other day as needed. The manual disimpaction..painful, messy also is a bit risky for tears of skin. Ask his pediatrician or GI doc for some help with this ok? (yes I am a retired RN so I get involved, can't help it )
Take care, please write again soon, would love to talk to you someday.

Thank you for all the information.....currently Isaak is taking an adult size dose of Miralax each day. It just is not enough and is on Nutren Jr. with fiber, we have discussed this with the dr's numerous times....they never seem to listen to me and prior to the G-tube placement he was hospitalized 6 times for massive impactions. I have tried every suggestion given to me..I also give him exta fiber & water through his tube each day....nothing seems to work. I had to be trained by nurses at our local hospital to do manual disimpactins...I am really careful while doing it but yes t is scary, messy, and disgusting!  He hates it and so do I...it is horrible to have to do this to him.  Thank you for taking time to talk to me I really appreciate all your help.  Love you and your family.

Sarah - posted on 11/24/2009

Thank you...Amber same goes for you guys...I would watch your little ones any time you guys need help...Garrett mentioned you guys don't get much time alone now..and he wishes you could have a little more 1 on 1 time together. I know all about that..I say you plan a date night for you too and let me have your kiddos for a few hours..and you 2 go enjoy some mommy and daddy time:)

Amber - posted on 11/24/2009

Sarah, if you ever need someone I would be more than happy to watch him. I know that Maddie has issues but I do know what it is like to never get a break. just let me know if you need a break.

Sarah - posted on 11/24/2009

Thank you all for your kind words and encouragement.......Isaak is an amazing child, and I wouldn't change a single day I have spent with him. I was told at 2 months he was dying and here he is 5, there are days I am so tired......and I have no one to relate to at times. I talk to my mom allot..since I have a 37 year old brother who is handicapped..who still lives with my parents. He is able to care for himself with constant reminders and help, but needs constant supervision. He is extremely violent..and harms himself and my parents as well at times. My mom was 16 when she had him...and continued to have 4 more children by the time she was 25. Our father left my mother when my mom was 27 to raise 5 children on her own. He has never paid my mom a dime in child support. My mom had to learn to work since she never had prior to my dad leaving....she raised 5 of us..1 of which is special needs for 4 years until she met my step father. They married and we joined his 5 children...yes I am the youngest of 10 children..talk about a crazy house:) I have her to talk to when I am down, but I also could use the help of other mothers. Isaak attends Early Childhood Intervention 3 days a week for 2 hours per day. When he is not sick that is....Isaak has a compromised immune system and is ALWAYS sick with something. He also has sinus infections none stop..and with that comes lots of green mucus drainage..and if this is happening we cannot send him for the fact there is school policies that will not allow him to attend when there is drainage. So far this year he has attended only 13 days in total....the sad thing is he is picking up all the germs and sickness from school..we keep our house extremely clean...most people never know we have 4 kids when they walk in..we keep it that clean. But we have to do this for Isaaks health..I replace filters in the heating systems every 5 days to help his asthma problems, I vacuum 2 times a day, and an constantly cleaning. But regardless of that when he goes to school he comes home with something he has picked up from the other children. We have talked about having him tutored from home...due to all the illnesses but have yet to here back from the school system..he does go full time next year, as that is the law where we live....and yes it is kind of sad that I look forward to him going full time. I also dread all the sickness that will come with it as well..and there in turn I dont get much of a break since he will be home ill most days which actually means that much more care he will need. I have an older mature friend who just has signed up through the state to do respite..and we are hoping she will do Isaaks...which would be nice since it is someone I trust, and know cares about my son. I need a break sometimes....I am exhausted, scared to sleep at night for fear he may be dead in the morning when I awake. I have so many family members here but only my mom to relate too, and nobody outside of her in our family will watch my son. I dont know if there scared of him or embaressed by him? My ex husbands parents come to town to get groceries as they live 2 hours away in a very rural area..and they never call our stop to visit there grandchildren...I know they have been in town because I get calls from family members and friends asking if I knew they where up because they ran into them at the stores. No idea why they dont want too see the kids...his mother has never once held our son, and when she has been around dotes on our daughter and asks like Isaak does not exist. But oh well that there so stupid they do not know what they are missing........he is such a sweet heart and he has me and my new husband and his brother and 2 sisters to love him...and we do so very much. Each day is a blessing and I know I need to be thankful for that, and stop complaining, I am looking into getting him more help and me some too....Thank you all you wonderful moms...all my love to you and your precious little ones too..old and young alike...and Happy Thanksgiving too. We all have something to be thankful for!

Diana - posted on 11/24/2009

Our son is 15 years old, a Freshman in H.S. and has Bipolar with Anxiety and Depression. We put him in the hospital to get re-stabilized on meds for a week. He had a relapse and now is not going to school. After tring everthing with the 504 plan, still not working...We are now awaiting truancy court. He is a good kid, no drinking or drugs and has a big caring and compassionate heart. But, he is being treated like a victim. I am a Mother in the middle of Doctors, Therapists, School, our family, the law and our child....I feel like 500 percent is not enough....How did you get your son through school, Marti? I would love some tips...I feel so helpless. I had to leave my job to take care of these issues, which led to us losing one of our vehicles....Although, our son is the most important over materialism.

Marti - posted on 11/24/2009

Definitely. My 21 yo son has ADHD, NVLD, anxiety attacks, chronic ear and sinus infections and some real problems with addictive personality and yielding to peer pressure. Atop all that he suffers from depression! (Can you blame him?) Getting through school was a fight all the way to have teachers work with his IEP (Individualized Educational Plan) and now that he is graduated, our insurance doesn't cover him. We aren't rich people and medical costs are so high that we can't afford to have the care he needs. You bet I get discouraged....and so does he!

Barbara - posted on 11/24/2009

hi, I am the mom of 3 sons..34, 32 and my special needs son is 28, yes they grow up, yikes!
Chris has R hemiplegic CP, epilepsy, has a V-P shunt for hydrocephalus, panic attacks. He is mentally retarded from seizures and functions in range from 7-13.
School was a blessing for me, in California they start special ed at 3 years old, check to see what the age is in your state, sometimes the school district acts like it is a secret what is available. I saw where you spent so much $ on Therapy, check to see if there is an Easter Seals or United Cerebral Palsy or Shriners around...they all deal with disabilities and some offer therapy and other services.
I understand you when you are unhappy about your ex, sadly, he is a poop and won't change...it IS a blessing though that you have a wonderful man in your life, hooray! Do not feel guilty about the actions of another person, you can't control that, only control your reactions (I think you are doing great btw).
Many agencies who provide respite provide a training session..an hour or so so you can be there with the caregiver (probably an LVN) since he is tube fed, they are caring and actually pretty protective of their patients. There are checklists of what they do, and you get to sit down with a nurse and write out schedules, what his motions mean etc and keep them in a notebook for the nurses reference.
I do hope this all works out for you, and you get respite, even if it's at night so you can sleep like a person...remember those days?
When I used to get discouraged..when Chris would have multiple seizures a day and I couldn't leave the house for 5 minutes for over 6 weeks sometimes..it didn't seem like there would be an end, but, somehow this works out.
School Will be a blessing for you and..hmmm...bet there is a chance SSI might have to provide nursing care as an aide for him during class. It will be tough to put him on that bus the first few weeks, but it does get easier, trust me!
One last thing..the constipation thing..it sounds like you need a bowel program for your son. This would include stool softeners, laxatives as needed and enema every other day as needed. The manual disimpaction..painful, messy also is a bit risky for tears of skin. Ask his pediatrician or GI doc for some help with this ok? (yes I am a retired RN so I get involved, can't help it )
Take care, please write again soon, would love to talk to you someday.

Rhonda - posted on 11/23/2009

I can assure you that you're not alone! it happens to all of us from time to time! I see you've already gotten advice regaurding respite care and other like services. Your peditrician should be able to tell you what services would be right for your son's needs and yours as well. God Bless you and your family and keep in touch with me!

Rosemary - posted on 11/23/2009

dear Sarah' you are not alone. There are many of us in similar positions. We love our children but sometimes it all can seem too much to handle especially if you don't have the support of the father.I am on my own with 3 children.My daughter 15 is physically and mentally disabled,my younger son has heart problems and is partially deaf.What has really helped me is other mums.One in particular.Our girls go to school together and we mind each others kids when needed.If you could meet other mums in your area it can be a great support network.Even just to talk on the phone and say what a crap day you have had to someone who understands.Respite is very important.I know our systems are different here but anything you get could help.I hope you can get some help.Keep strong.

Paulette - posted on 11/23/2009

You are definitely not alone...I have a daughter (7 years old) who has cp....the symptoms sound very similar to cerebral palsy, however I'm not a doc. but I went through not knowing what my daughter's handicap for 3 years. It's horrible. I'm a divorced mother of 5, ranging from 17 to 2 years old. I sometimes feel very frustrated because it is alot of work caring for my special needs daughter, however, the thing that brings me back around is seeing that appreciative look on her face when I do care for her and praying is good. God said he will not too much on you that you can't bear. With God giving you that special needs child, he knew you would be the right person to care for him. I count it privileged that I have a special needs child, because it is a special, more greater blessing. Think about it.....If you can care for him and still maintain those other children...tells you that you can handle just about anything. It's okay that you feel like that but I'm going to be the one to tell you that your reward will come SOON...just hold on...and as far as the father.....men are weak anyways....don't let that distract you from caring for none of the children....Just know the kids only have you and you have them.....things will get better...GOOD LUCK!!!!!

Kerri - posted on 11/23/2009

my sons father walked out when i told him i was pregnant and now im having to deal with a 6yr old who is severly bipolar and adhd and i get hardly any sleep everyday is unpredictable and a battle i feel defeated more then discouraged

Sarah - posted on 11/23/2009

You are not alone. Although my daughter is not quite as severe as your son. Her father is not a part of the picture either. My daughter is alomst three but cognatively she functions at the level of a 0-3 month old.Physically though she is the size of a one year old and can walk. It can be very draining. From time to time I get discouraged and I know that there are other moms out there that do too. A good friend of mine is a single mom of 6, 3 of which are special needs and she does it all by her self too. When I am having a problem I call her because she can relate. Also my family offers plenty of support as well. I myself was a special needs child, so my mom is a good person to talk to for me.

Just a suggestion: respite care. Through my friend Jen I found a nursing facility that deals with special needs children. I know that not every county is going to have places like this, but if you can find them it is definetly worth it.

Also because I have reached out to other moms that have special needs children, I now have friends that understand what I go through and also know the ins and outs of caring for a child with special needs. Jen and I switch off and baby sit for each other.

Maybe you can reach out to moms that you run into at your local childrens hospital.

When my daughter is admitted to the childrens hospital, I always approach other parents with the famous question "so, what are you in for?" We then trade war stories and for the remainder of the stay we can offer support, even if it is just the comfort of a familiar face.

Dena - posted on 11/22/2009

You are not alone. My boys dad abandon them 3 years ago. I understand your anger at him. Venting helps, but make sure you get the help. My thoughts are with you.

Christina - posted on 11/22/2009

It is completely normal to feel discuraged when you are dealing with a disabled child even when dad doesn't run off. You should look into respite care and check with your local socal security office if you have not already done so. You child may qualify for disablity services through them with in most states would provide so money and medical insurance for your child. Your local human services office should me able to help your find out a bout respite care and maybe a few other service depending on your families need. Some state have specal day cares and schools for handycapped children, which you might want to look into. These school provide therapy which should help your child with the develpoement issues your are facing. I have a nine year old that has started him his life in about the same condition your chld is in and the school he goes to has aided him and it give me and my husband the break we need to keep form losing our minds. I wish you the best and I hope your are able to get the help you need.

Roberta - posted on 11/21/2009

I am a survivor of a special needs adoption child. My husband and I could have only one child, so looked into adoption and the Lord directed us to Tom. He was 11 with diabetes since he was 5 and many phsychological issues, probably from fetal alcohol affect, which made taking care of his diabetes a 24 hour health issue, with many late night throwing up issues and hospital trips, and bed wetting. Our daughter was 3 years younger than him.
But we survived. Yes you need help. We used the SSI and it was a life saver. Few marriages can survive this strain. But time will pass. Your children will not always be small. They will grow up into caring people because they see you caring. My biological daughter did not have an easy time dealing with Tom many days, with his anger out bursts, but she developed a sense of humor that disarmed him many times. I was in awe.
Yes, get some respite care ASAP before you burn out. Even if it's not exactly who you want and they don't catch every little nuance of his needs, he will survive for a few hours until you've had a chance to recoup. My prayers are with you.

Marlene - posted on 11/21/2009

My son is 10, does not speak, walk, epileptic, partially sighted and yes the constipation issue. How do you clean his tummy out? I use enema's every 3 days and it works for him.

We all feel frustrated, especially at 2 in the morning when one has had no sleep.

You really need to try to get help. And you need to get out or you will lose it. Try to let go and explain to a care giver what to do.

Maybe you have special needs mom in your area, they are the best for help.

Prayers are with you.

Crystal - posted on 11/20/2009

Have you applied for private duty nursing? It sounds like your son qualifies.

Brenda - posted on 11/20/2009

Ofcourse we ALL feel discouraged at one time or another. My daughter is 6, and now that she's in school and giving me a break, we are going to get some respite. For the first time ever. I could have used it last summer. She is very hands on, needs constant supervision, but she is not difficult, she is very sweet. Still, no one ever offers to watch her. I've spent one night away from her in her life. Last August, after all summer with no break, and the constant multitasking of watchng her while I try to get stuff done (harvesting, shopping, housework), I started shutting down, and did as little as possible. When school started, I just celebrated being by myself and not having to care for someone else all day long. My husband works and I don't. Therefore he thinks I should do ALL the childcare, ALL the time.

It IS hard being a special mom, and sometimes there are no easy answers.

Sarah - posted on 11/19/2009

Yvonne,
I have applied for respite care, funny you asked this I just got off the phone with his DDS worker. There is a shortage of respite givers in our area, and I am really particular who I leave my son with. He has lots of medical issues, and you have to be aware of certain sounds he makes, and watch his movements to know what he needs. He is signed up and we are to receive 20 hours a month, I would love to have a family member do it but they consider that natural care and wont allow it to be considered respite. We have applied for SSI previously, and where denied because our income was to high at the time. I plan to reapply in the next few weeks as I am getting remarried this weekend, and finances have changed and I am no longer working....since the birth of my last child. I hope that we get it, we could really use it...I spent $17,000.00 in therapy for him last year out of pocket. I am more than anything hoping for it since he would get his medical for sure if he got his SSI. I have a great man who I have been with for the last 4 years and we are to be married this week, but I feel guilty that he is doing all the fathering when it is not his biological son......I know he cares for Isaak, and helps me with his daily needs...but I cannot get past the guilty feeling that his dad should be helping with his care as well. I resent his biological father for not having to help me care for him, and he is out partying at night, playing the role of a single guy with not a care in the world....we also have a 6 year old daughter together as well...and he calls once every three weeks to talk to her but never asks about his son...... He is also is living off his unemployment/ and working under the table for $20.00 an hour....but doesn't claim any of it. I just received my child support payment for the month for the amount of $50.00..since he is not telling them he is working under the table..all the devision of child support could do was take 20% of his unemployment. It just maddens me that he could be this selfish and not want to take an active roll in his children's life. I just need somewhere to vent and was hoping that there are other moms out there that can relate to me....Thanks for listening and for your advise....how old is your son?

Yvonne - posted on 11/19/2009

Are you able to get any respite care? If you are not currently getting any, please look into your states agency for the division of developmentally delayed children. You can request information by even calling your public health nurses office or a children's resource center. There are helps out there so you are able to have assistance, if you want to tll me what state you are in, I will try to find out more information for you as to who you can call. Also, have you looked into SSI? My prayers are with you! I have a special needs son who needs supervison constantly, but is mobile and I know how hard it gets some days! hang in there and let's get you and your son some help!