Single Parent and Special Needs Child

starrdiva211

Sometimes I don’t realize how ENORMOUS something is until I say it out loud… I just wanted to say that first for some reason.

I am not sure if I ever really introduced myself but from some of the threads I have replied to, I have made mention to my situation.

Ex and I were together for four years, finally in March he got tired of waiting on me to get it together in our relationship and started the procedure to move out of the house and he did. At first, I thought I would have to move out of the house and worried about spending money for an apartment but I am staying in the house until his mom moves to Texas from California end of this year/beginning of next year (Which gives me time to save) or until I am forced to move back to my hometown.

As the title says, single mom and special needs child. My son was born 11 weeks early and with a congenital defect called EA/TEF (Esophageal Atresia/Tracheoesophageal fistula) which he had to get repaired at 2 days old and has since had another surgery for it 3 months ago. He spent 55 days in the NICU. I knew there was some possibility that there would be some developmental issues and I prayed and hoped that by the age of two he would be caught up as a lot of people had said (he is now 21 months…OH EM GEE ALMOST TWO!!!!)

My son currently sees Physical Therapy 2 times a week, 2X’s a month play therapy and feeding therapy once a week. He is not walking yet (but cruises and crawls and climbs like there is no tomorrow) and because of the EA/TEF does have issues with solids (even mashables and purees but we have gotten so much better). This past Tuesday we had his Early Childhood Intervention re-evaluation and we are still behind in somethings and recommendations have been made to add more therapies including speech, and occupational therapy (have an evaluation for that one on Tuesday) and add another feeding therapy appointment. How do I currently do it now??? The nanny takes him to feeding therapy on Thursday afternoons and the PT goes to her house on Tuesdays. Mondays and Tuesdays are my late nights at work so we do stuff in the mornings.

And I hadn’t even mentioned his normal doctor visits.

Where is his father in all of this? I have been weighing the brunt of it for the longest because I thought it was what I was suppose to do and since he is a truck driver and running his own business, he needed to focus on that. If I kept homelife calm, we would all be happy… For awhile, he seemed to be in denial as well about everything the baby needed therapy wise. And I am so afraid of being that viewed as a crazy, deranged, greedy, needy baby mama I handled it. But I did step up and tell him that I wasn’t okay. I was suffering and struggling and I needed help. He has been good so far.

I have an amazing little fighter and he is the light of my life. You cant tell him he is behind any toddler his age but of course since Mom knows, it is a struggle not to shield him. Right now I am in survival mode for him! I honestly have one foot in. one foot out the door out at my job because they are not parent friendly in the first place and being a single parent is even worse (why cant her husband do this or where is his father)… I do not have any family anywhere near me to help out.

I try to do stuff for me as much as I can and when it is financial possible (not too often) but of course the guilt comes in. And now that his father and I aren’t together and I am thinking about male companionship the BAD MOTHER ALARM goes off in my head. How can I want that when my son NEEDS SO MUCH????

 

Any other single parents of special needs children here?

 

I know this was long and ENORMOUS. Thanks for reading

And I have included a pic of The Lil Emperor himself

freeatlast2014

Ok i don't even know where to begin with this. First and foremost, you are a wonderful and strong mother doing the best she can for her child. I do not have a special needs child but I saw/see my aunt who is 3 years older than me (and is special needs) and all that is required of my nanny (my poppy is now deceased) and I am in awe of you. There is a level of patience required of you that I is just so impressive.

How do you do it? Well, you just will. Because you have to. Can his nanny help? Can you have the nanny do more appointments while you continue the ones you are doing? It seems with the number that you need there will have to be some done more than once in a day.

What kind of industry do you work in? Can you use your fmla or is that used up? Is there an option for flex hours or work from home? Can you maybe add 5 more hours to a 24 hour day? Lol
It's tough and it will get tougher.

Do not for 1 second feel guilty for wanting time to yourself. Does your bd have any visitation at all? Can you squeeze in a pedi or lunch with the girls if he does? Any chance you can get family to come out by you? An old friend/neighbor you can have some intimacy with at a hotel?


I do not envy you and I wish you the best. Have you talked to local organizations that can help find you funding for him to help with caretakers (I know in my area the division of developmental disabilities DDD and Easter seals are big ones).

Keep us posted and keep on posting. Your little man is adorable!!

freeatlast2014

Oh and 1 more thing. Stop blaming yourself for the dissolution of your relationship. He chose to go. To say that you didn't get your act together is harsh to put on yourself. Look what you have to do and how much help you have been receiving! He needed to step up, not the other way around.

20thirteen

I agree with lynnyd, and I have to add he's a beautiful child. He really is.

starrdiva211

MrsLynnyD said:

Ok i don't even know where to begin with this. First and foremost, you are a wonderful and strong mother doing the best she can for her child. I do not have a special needs child but I saw/see my aunt who is 3 years older than me (and is special needs) and all that is required of my nanny (my poppy is now deceased) and I am in awe of you. There is a level of patience required of you that I is just so impressive. How do you do it? Well, you just will. Because you have to. Can his nanny help? Can you have the nanny do more appointments while you continue the ones you are doing? It seems with the number that you need there will have to be some done more than once in a day. What kind of industry do you work in? Can you use your fmla or is that used up? Is there an option for flex hours or work from home? Can you maybe add 5 more hours to a 24 hour day? Lol It's tough and it will get tougher. Do not for 1 second feel guilty for wanting time to yourself. Does your bd have any visitation at all? Can you squeeze in a pedi or lunch with the girls if he does? Any chance you can get family to come out by you? An old friend/neighbor you can have some intimacy with at a hotel? I do not envy you and I wish you the best. Have you talked to local organizations that can help find you funding for him to help with caretakers (I know in my area the division of developmental disabilities DDD and Easter seals are big ones). Keep us posted and keep on posting. Your little man is adorable!!

Thank you for the compliment on little man. We are approaching those Turrible Twos and OH BOY!!!! LMAO

My family is 312 miles away from me and his family is even farther so it is just the two of us here. BD and I havent set up formal visitation or court ordered visitation. On some Saturdays that I work, he will "watch" The Lil Emperor and he will visit sometime during the week for a few hours (he drives trucks and what he mainly hauls is Thursday-Sunday but he picks up stuff during the week too. Growing his business). I have been trying to plan stuff out ahead and give him enough time so he could be off work too. My thing is... a few more overnights so I can get that hotel visit with an old friend and do some stuff for me. :-)

My sitter and I have discussed her doing more of the therapy visits with him and she seems to be okay with that. This girl is a god-send and I honestly do not know what I would do without her. For what she does, she is very underpaid and she recently let me know that she will have to raise her rates :-(  When BD isnt around or available, she does watch DS if I need my hair done but of course I have to pay her for her time.

I wasnt sure if I could find places that would help me pay for private care but lawd knows I need it. I work in for profit higher education and like I said, not very parent friendly. I let my supervisor know what was going on and that I am going to just do my job until they tell me I gotta pick... So one foot in the door/one foot out...

freeatlast2014

I've worked in for profit higher ed and am now in non profit higher ed. I totally get what you are saying. I've been at this job for 7 months now and with my domestic violence case, divorce, 2 small kids getting sick at a new daycare and a BD who isn't reliable I have had to take a ton of time off of work. They are so understanding and I feel this job is my god send. My other school would have let me go long ago. I so know what you mean!

What state are you in? I'm wondering if I can help you find the state agency that you can contact for help. Maybe your pediatrician would know. I know my aunt gets over $40k per year to spend. She doesn't get it in her pocket but it's available to use with approval. That's a ton of money.

Also, you should be getting or trying to get SS/SSI for your son. That would probably get him money each month and Medicaid. I'm not sure and am no expert but it sounds to me like you really need an advocate. Have you posted on the special needs board? Those women could probably point you in the right direction.

Lastly, do you have a lawyer for your custody/visitation? Does BD want an overnight? Can he handle one? Try to get something even temporary drawn up so you get some time without having to pay for it.

Wow, I'm not sure how you do it!

MinnesotaMomma91

I just wanted to pop in to say you are doing wonderfully. Trust me when i say that there are times each and every one of us is fighting to keep there head above water.

And please dont feel ashamed or like you look crazy/needy for asking ex for with your child. You especially deserve help

starrdiva211

MrsLynnyD said:

I've worked in for profit higher ed and am now in non profit higher ed. I totally get what you are saying. I've been at this job for 7 months now and with my domestic violence case, divorce, 2 small kids getting sick at a new daycare and a BD who isn't reliable I have had to take a ton of time off of work. They are so understanding and I feel this job is my god send. My other school would have let me go long ago. I so know what you mean! What state are you in? I'm wondering if I can help you find the state agency that you can contact for help. Maybe your pediatrician would know. I know my aunt gets over $40k per year to spend. She doesn't get it in her pocket but it's available to use with approval. That's a ton of money. Also, you should be getting or trying to get SS/SSI for your son. That would probably get him money each month and Medicaid. I'm not sure and am no expert but it sounds to me like you really need an advocate. Have you posted on the special needs board? Those women could probably point you in the right direction. Lastly, do you have a lawyer for your custody/visitation? Does BD want an overnight? Can he handle one? Try to get something even temporary drawn up so you get some time without having to pay for it. Wow, I'm not sure how you do it!

My son does receive SSI and all of that goes to paying the Nanny. I am in the State of Texas by the way. Since I work, he is on my insurance but I am working on the supplemental Medicaid. When we were in the NICU, the hospital had social workers who worked with parents who qualified for stuff to help with care. Which was a godsend!!!!

I have been trying to get out of the for profit higher ed since forever!!!! We have another mom there who has twins who were born preemie as well and she is on the go all the time as well. Her department complains when she disappears or leaves the building for lunch... THE WOMAN STILL PUMPS!!!! It is CRAZY!!!!

I do trust BD to keep the Lil Emperor for overnights but I dont think he realized when he moved out that overnights are part of the package. Also, he doesnt have baby equipment at his "bachelor pad"... Told him very simple fix. He hasnt ever been violent, demeaning to me and when he is around his son loves him. It just didnt work out with us... No Lawyers involved...yet.

freeatlast2014

Pack and play, space saver booster, some diapers and wipes and send the Lil Emperor on his way!!! And go get yours girl!!!! You deserve a night away.

My first night away I met an old friend at a nice hotel and it was the best weekend I had in YEARS!!!