Having trouble coping.

preggersINschool25 · May 2013

I guess when you have a full term healthy baby you expect everything to be alright.. so when Grant started to present delays and problems it really caught me off guard. I thought, "Okay, he is a little delayed, I'll get him EI, he'll catch up, no worries.".

One of my first IE goals was for him to crawl by his birthday. Well, now he is 15months and no where near crawling. He can't get into sitting on his own, he can't get on all fours, he can't roll back to belly...

Its not all physical either. He can't say ma or da, and doesn't seem to have the cognition skills that he should. He lacks any motivation and shows only a small amount of interest in toys. That has only been a recent development too. He used to show NO interest.

My brother had a baby this last February and she is already doing things Grant never has done. My mom came over to visit and she started crying because of where Grant is in comparison to his cousin.

I know Grant is different and I shouldn't compare him, but I am already dreading family events because his daughter is going to be a year younger and way more advanced than my LO. Grant has been stuck developmentally at 4 to 6 months for a very long period. We have no explanation yet, but are waiting for genetic sequencing results. He has already had a microarray...

I take an anti depressant and see a therapist, but I am just having more trouble than usually lately. I just know no one in my situation... that being having a full term healthy baby be extremely delayed and no explanation.

I just am not sure what to do. I think this is all kind of coming about because he has been super fussy lately and I've been looking about buying an ergo because he isn't mobile and it should be easier to carry him around. I just hate that I have to consider buying a baby carrier this late in the game.

I feel like Grant's only beneficial therapy is from his PT. I have been considering dropping speech because there is no feeding benefits or speech benefits. He has a g tube. I feel guilt for thinking about dropping a therapy because I don't work.. Grant is my only job. I just wish I could have a normal life and look at adding to the family, but with so many unknowns I can't. Sorry for the ramble.

ToastieSimons · May 2013

I know how you feel. With DS1 who was full term and came out hypertonic we had no idea what to expect. His first Ifsp was written at 1 month old. His first goal wa sitting. At his second Ifsp his goal was still sitting. At his third Ifsp his goal was still sitting. For us he had a huge explosion of milestones at about 18 months.

PI have no advice other than hugs. When the days seem really tough I try to list all the things DS1 has done and accomplished. Especially those he would never do.

JoJoGee · May 2013

ToastieSimons:
For us he had a huge explosion of milestones at about 18 months.

We experienced something similar. For the first 1.75 years of Lily's life, I felt like we were in progress purgatory. If she did gain any skills, they were small gains and were spread out far over time. Lily was receiving OT, PT, ST and EI once a week and nothing was happening! I felt like a failure as a mother.

Eventually, I had to reorient my thinking. I stepped back from implementing therapy exercises at home maybe not the best plan, but I was driving myself crazy; I started reminding myself of all the wonderful things my daughter had to offer even if she never progressed snuggles, for example; and I started letting go of the future I had planned for her. Once I did all of this, and really internalized it, I was able to assist Lily better.

I went back to implementing therapy exercises with an attitude of, "She will do whatever she can do in her own time, and this can only help her." Sometimes the progress is still slow. And, sometimes, I still get down about Lily's skills or lack thereof. But, then she reaches a mini or big milestone and I get so excited I have to shout it to the world which I do.

I guess what I'm trying to say here is that none of us are perfect. Just do your best, take it one day at a time, and try to focus on the here and now the best you can. And, never hesitate to ask for help.

Rachel Sonnier · May 2013

Big hugs. I hope you start feeling better about it soon, but I totally hear you about comparing. It's hard.
DS is 4 and he has an 18 month old cousin on each side of the family. The boy cousin eats with a fork and stacks things and DS at 4, still struggles greatly to do those things. Girl cousin is potty training, wearing underwear and going to the potty on her own. DS just started going to the potty on his own a few months ago and is still mostly in pull ups. On good days I am so proud of how far he's come, and how well he's doing in the body God gave him. On bad days, it just sucks, especially if he's frustrated with himself.

mightmom13 · May 2013

Sorry you are going through the comparison thing it sucks, and it seems there is no good way to spin it sometimes.

DD has a younger cousin by almost a year who can already clearly voice control the darn Xbox after seeing his dad do it once as well as walk and jump like crazy; she also has a friend at that young age too doing all the things Sarah is doing NOW including walking better on the verge of running but Sarah is a year older. It sucks to watch, and it sucks to give my friend mom advice to the key because Sarah is just now there and because understanding better per therapies/therapist education.

Also as a mito mom I know you and your body are tired from Grant not being able to be mobile and I pray for you! Sarah is having issues with getting tired SO fast and yet it is hard on me to carry a 3 foot 25lb kid outward apearence around. It's not ending tomorrow for any of us so again prayers for strength.

Also you have my email if you need anything! Try and hang in there.

hopanka · May 2013

I am so sorry. The comparisons with younger or same age family members SUCK. I still remember how it used to completely ruin any family event for me. The sadness and jealousy used to eat me from the inside the first couple years post dx. now, it only mildly stings for a second. It does get better, I promise. Also, the limbo about the nonexplained delay contributes to your struggle to cope. It prevents you from moving on and healing. It totally sucks, I get it. You are doing what you can, you are trying to figure it out and so are the professionals that are working with him. Cut yourself some slack, some things are beyond our control, we can only do the best we can. Be kind to yourself. And, its totally fine to take a break from therapy. I did, when i knew i was hitting a wall and wanted to rip my hair out at the thought of yet another day full of therapists in my house. Take care of yourself.

goldenleaves · May 2013

Hugs!!

I think it's got to be pretty hard without a diagnosis and reason why the delays exist. It's easier for me because I knew Lauren would be delayed. Most of the time I don't even think to compare her to my nephew (he's 5 months younger). I do find myself comparing her to other kids with Down syndrome and that can be pretty rough.

I'm sorry I don't have any advice

greengirl0909 · May 2013

I'm also offering hugs. I have a niece 3 months older than my LO with delays. My sister calls and says "I think she's gifted- guess what she did today?" I want to be happy for her but I'm locked up in my own worries right now. She screamed at me one day because I was too self-focused when I asked her just to share her celebrations with someone else. I know I should be able to be happy for her, but it's really hard when my LO doesn't have those daily joys of new tricks.

kcisthebombdotcom · May 2013

I definitely feel your pain. We're hitting the one year mark with ei and still didn't reach the goals we had hoped for. I'm terrified to think how far behind her scores are going to be compared to her peers.

The one thing that's a blessing about all this is how much you appreciate the little things. My daughter started saying ready set go to go down the slide recently-it's the first thing she's ever done communicatively with any consistency besides signing more. Her slp and I were literally jumping up and down in excitement over it. Lol. You really learn to appreciate and celebrate the little victories more.

I know it's hard to be stuck in that place with no progress. As much as it feels like it, it won't last forever. Also in regards to the ergo-it's a great investment. My dd walks but has hypotonia and tires easy and I can still comfortably wear her in it for quite a while.

macchiatto · May 2013

Hugs from me as well. My son with SN has a "NT" twin brother. They're about 18m apart in gross motor skills and I cringe when people compare their gross motor or social skills. (Fortunately most of our friends know better.) I wish everyone knew better than to compare. I wish I could say or do something that would help. Your feelings are very understandable. Hang in there. I hope you're able to find a definite diagnosis soon that may provide some helpful insights and direction for treatment.

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